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Title: I've just been banned from the OUCH UK board!! Post by Chuffy on Nov 2nd, 2005, 7:13pm I posted the following out of utter frustration (the text speaks for itself) and without discussion they banned me from the site, and I'm a fully paid-up member, the bastards! The only annoying thing is I can't now get on there to see if thay have deleted the post. [smiley=huh.gif]
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Title: Re: I've just been banned from the OUCH UK board!! Post by Mr. Happy on Nov 2nd, 2005, 7:32pm Stodgy bunch, at best, even on a good day. Great vent, just before you JUMPED. Go for a pro-rated refund, at the very least. Over here, it's Eternal Salvation Guarented, or Triple your Money Back. RJ |
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Title: Re: I've just been banned from the OUCH UK board!! Post by TxBasslady on Nov 2nd, 2005, 7:32pm Uh....DJ will delete posts here too. Hell, sometimes he shuts the whole board down :P Tis not kosher to bash Doctors by name...or Pharmaceutical companies by name. Whether we like the Docs or the Med companies or not...we need them. We can't afford to lose their support of CH. This (of course) is my personal opinion...and not necessarily the opinion of the other 9,000 members of CH.Com. We also need to remember that even though a med does not work for one....it may possibly work for another. Jean (modified...'cause I signed my name twice...must be an age thingey) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jonny on Nov 2nd, 2005, 7:37pm on 11/02/05 at 19:32:30, TxBasslady wrote:
This qoute should be carved in stone!!!! Thank you, Jean! :-* |
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Title: Re: I've just been banned from the OUCH UK board!! Post by mynm156 on Nov 2nd, 2005, 7:42pm on 11/02/05 at 19:32:30, TxBasslady wrote:
CAN I GET AN AMEN BROTHERS AND SISTERS |
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Title: Re: I've just been banned from the OUCH UK board!! Post by unsolved1 on Nov 2nd, 2005, 7:45pm I wouldn't be here today without Imitrex injections UNsolved |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Grandma_Sweet_Boy on Nov 2nd, 2005, 7:46pm Quote:
Sure ya can - AMEN!!!! Carol |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jonny on Nov 2nd, 2005, 7:50pm From the OUCH (UK) Guide lines We have introduced a 'Yellow & Red card system to help keep the content of posts within expectable limits for the good of ALL members. May we remind our members that Laws vary across countries and many things that are acceptable in other countries are against the law in the UK. We ask that our users/members remember this and post in a suitable manner to protect both our web hosts and our charity from prosecution. A little adage that may help is "If in doubt - Leave it out ! ". |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Chuffy on Nov 2nd, 2005, 8:01pm Please don't get the wrong end of the stick with this. The rant was borne out of frustration at OUCH UK's inability to deal with or even discuss the Shroom issue. I was on Cafergot for years and yes, IT WORKED but when changing Doctors was prescribed Imitrex jabs as recommended by a specialist. Luckily in the meantime I discovered the wonderful Clusterbusters and that has changed my life, so please forgive me for wanting to tell all and sundry about this life changing natural God given miracle. Even my GP approves and has struck the Imitrex of my meds list. Let me think, man-made chemical with potentially lethal side effects or something that grows in a field up the road? [smiley=huh.gif] Sorry that's just me, it works for me so as far as I am concerned I would be bonkers to go for the former. My rant isn't aimed at Glaxo etc (even though reading it now it could be misconstrued as that) but again at OUCH UK for sending me newsletters telling me about a Fun Run and some bloke that nearly died of an Imitrex OD when as far as I'm concerned the whole frigging letter should be shouting about the Clusterbusters from all the rooftops in the kingdom. Hope that clears it up. PS No Doctors were maligned in the rant. I was stating that Dr Sewell deemed me worthy as a case study but OUCH UK kept deleting my posts. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Chuffy on Nov 2nd, 2005, 8:03pm on 11/02/05 at 19:50:26, Jonny wrote:
I think my 'rant' was well within the guidelines, that's exactly why I worded it like that. Not a Shroom in site. ;) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jonny on Nov 2nd, 2005, 8:07pm on 11/02/05 at 20:01:49, Chuffy wrote:
Guess what? They built the site and they make the rules.....you broke the rules....whats so hard to understand? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by unsolved1 on Nov 2nd, 2005, 8:08pm Why post about it here? (On more than one board) UNsolved |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Chuffy on Nov 2nd, 2005, 8:12pm on 11/02/05 at 20:08:47, unsolved1 wrote:
Yeah, sorry, you're right , why bother with anything? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 2nd, 2005, 8:16pm on 11/02/05 at 20:07:28, Jonny wrote:
That would be all well and good if they had a sensible reason for the rules. However, in this case their reason for banning discussion of alternative treatments doesn't hold water. Secondly, they built and run that site using money from their members. To then refuse to listen to those same people seems to me completely unreasonable. Lastly, the trustees of OUCH(UK) are too cowardly to discuss this any public forum which makes me think that their stated reason for this cruel censorship is entirely spurious. Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by TxBasslady on Nov 2nd, 2005, 8:16pm on 11/02/05 at 20:01:49, Chuffy wrote:
I used the thing about the Doctors as a scenario...not as a fact. And yes.....it certainly does appear that your rant was aimed at the named Pharmaceutical Co. We support Clusterbusters.......no problem there for us. There is no wrong "end of the stick". Call it like it is......you already admitted you possibly worded your post wrong......and I can just about bet the farm...that you did. No offense intended....just calling it the way I see it. Jean |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Chuffy on Nov 2nd, 2005, 8:18pm on 11/02/05 at 20:16:24, TxBasslady wrote:
None taken. ;) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Cathi04 on Nov 2nd, 2005, 8:19pm Chuffy, Say what you need, express yourself- here...... IT"S ALL GOOD!!!!!!!!!!!!! Oh, and I am glad to know that SOMETHING has helped you find relief from this pain/sleep dep/depression that is CH. PF, Cathi |
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Title: Re: I've just been banned from the OUCH UK board!! Post by theoldboiler on Nov 2nd, 2005, 8:23pm Chuffy How do you know you have been banned? Are you sure you aren't trying to access the old board? It crashed so badly a new one had to be started a couple of weeks ago. If someone is banned they warned first and their posts deleted and the reasons explained to them in an email, you aren't just banned without warning Wendy (pubgirl) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by rextangle on Nov 2nd, 2005, 8:23pm I applaude you Chuffy for speaking your mind! I always do, and often have to pay the consequences, but to me it's worth it. Everyone has the right to express how they feel without bullshiting, or constantely be in fear of the big "PC World".... Fuckin' shit! Rex |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Chuffy on Nov 2nd, 2005, 8:24pm Thanks Cathi04. Seeing as it's 1.20am in the UK and I have to be up at 7, I'm off to bed, so you can all talk about me behind my back! ;;D Laters. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jonny on Nov 2nd, 2005, 8:25pm on 11/02/05 at 20:16:21, majic wrote:
I guess you have a bitch with them....why bring it here to us? You can always post here (At no charge) and talk about almost anything.......(just leave out the animal sex talk...makes the chicks here squirm ;;D ) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Chuffy on Nov 2nd, 2005, 8:25pm on 11/02/05 at 20:23:23, rextangle wrote:
Right On Bro. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Chuffy on Nov 2nd, 2005, 8:27pm on 11/02/05 at 20:23:00, theoldboiler wrote:
No, it's the new site, it says I'm 'Banned because I asked to leave', fair comment. And so to bed. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 2nd, 2005, 8:28pm on 11/02/05 at 20:23:00, theoldboiler wrote:
Instead of spending your time worrying about which posts to censor and who to red card/yellow card or ban for discussing this topic, why don't you and the other trustees come over here and have an open debate about the reasons behind this policy? Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by theoldboiler on Nov 2nd, 2005, 8:31pm I'm sure you'll get a refund if you want to leave OUCH, but the money is used to great effect to help other sufferers so it would be a shame to take it back Wendy added: Piss off Richard, I'm not a trustee and I have no moderator privileges on the board so I don't delete anything, so you can get off my fucking back |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 2nd, 2005, 8:33pm on 11/02/05 at 20:25:16, Jonny wrote:
I'd be more than happy to debate this on the OUCH(UK) site but they delete any posts on the subject. Which makes having any debate about about this topic impossible and this board is really the only other suitable forum. I'm not quite sure why you seem to be supporting their stance...which deliberately leaves alot of Ch suffers in pain because they don't even have the opportunity to decide for themselves whether to try clusterbusters or not. Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 2nd, 2005, 8:35pm on 11/02/05 at 20:31:17, theoldboiler wrote:
Thank you for that polite, friendly comment. I'm sorry if I confused you with the Wendy that is (was?) a trustee. Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by theoldboiler on Nov 2nd, 2005, 8:39pm on 11/02/05 at 20:35:58, majic wrote:
Fuck off again Richard, I never was, never have been, and never will be a Trustee, I work on the Helpline so I would appreciate it if you get your facts right AND LEAVE ME ALONE! |
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Title: Re: I've just been banned from the OUCH UK board!! Post by rextangle on Nov 2nd, 2005, 8:42pm I'm trying to picture all these posts with the British accent, and it's actually pretty funny. Sorry. ;;D |
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Title: Re: I've just been banned from the OUCH UK board!! Post by theoldboiler on Nov 2nd, 2005, 8:45pm Jonny's British accent in writing is pretty funny, he writes things like "pip pip" and "tally ho" - honest ;;D Wendy (pubgirl) not an OUCH trustee, just a Helpline volunteer |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Ueli on Nov 2nd, 2005, 8:45pm on 11/02/05 at 20:01:49, Chuffy wrote:
I can't quite agree with that. It implies that the same chemical has two forms, one grown naturally and the other synthetic. It's the fucking tree huggers that think: chemically synthesized = bad, naturally grown (without manure, LOL) = good. Otherwise, I don't see any reason for the Chuffy bashing in this thread. >:( Have y'all all lived too long under a dictator? :-X Ueli [smiley=smokin.gif] |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 2nd, 2005, 8:46pm on 11/02/05 at 20:39:27, theoldboiler wrote:
Leave you alone? You're the one who jumped into this thread, added nothing to the discussion and then started swearing at me. If that's all you have to say then why not stay out of the debate? Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jonny on Nov 2nd, 2005, 8:48pm Ok, now its starting to make some sence. I tried to post the clusterbusters link on the UK site and when I hit preview to see my post....the link was changed to this. http://www. site full of idiots.com/ Its fucking sad that they are so stuffed that they dont have the balls to do what they say they are doing.....helping people!!!! |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Lizzie2 on Nov 2nd, 2005, 8:49pm To each his own... They actually have done studies showing imitrex may be safe in some people with certain cardiac disease. Don't make me dig up the study now because I'm too tired. And I'm not one of those people. But I have found abortives that help me. And I, personally, don't like to do illegal things.........but then, my license is my life. I support those who've found a PF life whether they use pharmaceuticals, alternatives, etc...and the only reason I'm writing at all is because in your attempt to justify talking about alternatives, you're ripping the pharmaceuticals to pieces - and some of us actually do use them safely and effectively. That's all. Carrie |
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Title: Re: I've just been banned from the OUCH UK board!! Post by theoldboiler on Nov 2nd, 2005, 8:51pm Richard, what on earth do you mean "jumping into the thread", I thought it was called "posting" If you read my post properly instead of doing what you usually do and seeking to find something to have a go at me for, I was attempting to establish that Chuffy had found the new board as quite a few members have had problems, terrible crime to commit trying to help. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by theoldboiler on Nov 2nd, 2005, 8:52pm Jonny There's only one person who could have done that, and you know who that is :-X Wendy |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jonny on Nov 2nd, 2005, 8:53pm on 11/02/05 at 20:49:53, Lizzie2 wrote:
And they saved my life, Kid!! |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jonny on Nov 2nd, 2005, 8:57pm on 11/02/05 at 20:52:40, theoldboiler wrote:
Gee, I guess someone was sitting there waiting for me to post that link when they didnt know I was going to post it, That is built into the site to change that link whenever someone types it.....thats a given.......are we stupid here, Wendy? |
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Title: dear Pilgrim Post by rumplestiltskin on Nov 2nd, 2005, 8:58pm It is no surprise to me that their "politeness" is not my cup of tea...granted. I do favor the freedom of speech that DJ, in his purist American way, allows and encourages here. In my humblest opinion, any site that claims to be somewhere a CH sufferer can find help and information that doesn't allow an open discussion of shrooms is just plain stoopid or blind or at worst...probably in bed with Drug companies or the beast himself. I'd pull their right to use the OUCH name so fast it would make their colonizing ever-so-proper head spin. ...and if you don't understand why I would say something as harsh as that...you either don't know the pain of CH or are still not convinced that all those people finding remission and pain cessation from shooms are telling the truth. Walk in the sunshine den PS Please don't come back with the "but it's illegal" argument. Telling the monarchy to stick it up their ass is as American as Baseball...as Indian as Making Salt...we are talking stopping CH pain here....I put nothing ahead of that. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 2nd, 2005, 8:58pm on 11/02/05 at 20:51:24, theoldboiler wrote:
I did read your post properly. You added nothing to the matter being discussed and then started swearing at me. Not sure what I've done to be on the receiving end of such vituperation, maybe you can explain? Tell me, what do say to people who ring your helpline and ask about psilocybin/LSD or LSA as a treatment for CH? Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by theoldboiler on Nov 2nd, 2005, 8:59pm Jonny, what I meant is there is only one person who can cause an automatic change like that to occur i.e. has the access and the knowledge and you know who that is. W |
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Title: Re: I've just been banned from the OUCH UK board!! Post by nani on Nov 2nd, 2005, 9:01pm Yikes! I'm starting to get that uncomfortable knot in my tummy that I get while trying to read the thread on the CH board about German CH sites. :-/ Chuffy, I think I understand your frustration. I have rather evangelical tendencies when I find something that works. I want to tell EVERYONE. I've done it very publicly with kudzu and a little more quietly with psilocybin and LSA. I've been lucky that I haven't been discouraged from doing so anywhere that I've chosen to, so far. If I am ever discouraged, I'll just do so much more quietly. From inside. Keep up the fight... with the CH! hugs, nani |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 2nd, 2005, 9:02pm on 11/02/05 at 20:59:44, theoldboiler wrote:
Why not just tell us who this person is? Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by theoldboiler on Nov 2nd, 2005, 9:03pm on 11/02/05 at 20:58:27, majic wrote:
I can tell you what I say. I tell them that it is illegal in the UK and OUCH cannot recommend it but if they want to find out for themselves the website is there to read. Satisfied Richard? Now can you get off my back and stop trying to give me a hard time as you always do and always have done. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Lizzie2 on Nov 2nd, 2005, 9:05pm on 11/02/05 at 21:02:18, majic wrote:
If you don't know, then you have not spent much time on the OUCH UK board. heehee :) And that's not to mean offense. LOL |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 2nd, 2005, 9:09pm on 11/02/05 at 21:03:19, theoldboiler wrote:
No. You're wrong again...you can walk into a shop and buy seeds containing LSA quite legally. Just like we could with psilocybin until earlier this year. A ban OUCH(UK) made zero attempt to fight. I only give you a hard time because you seem determined to defend OUCH(UK)'s stupid stance on this topic. Why, I still don't know as you've never bothered to explain. Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 2nd, 2005, 9:10pm on 11/02/05 at 21:05:06, Lizzie2 wrote:
I can't...I'm no longer a member...for exactly the same reason as Chuffy. Why all the secrecy? Why not tell us who you're talking about? Richard |
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Title: Re: dear Pilgrim Post by theoldboiler on Nov 2nd, 2005, 9:12pm on 11/02/05 at 20:58:16, rumplestiltskin wrote:
For what its worth I agree with you Den , but I'm unsure how you would remove their right to use the name OUCH |
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Title: Re: I've just been banned from the OUCH UK board!! Post by thebbz on Nov 2nd, 2005, 9:21pm You brits better start rowing or the tea hits the water!!! LOL [smiley=laugh.gif] I wonder what, if any laws in GB there that would restrict this line of conversation. Is it a policy of OUCH UK or is it some restriction by the government. Maybe Blair and Bush have been trippin and the supply is low [smiley=laugh.gif] No wonder he visits his ranch so often. Clusterbusters rule. ch.com rules. The right to free and open speech rules. Mean people suck. I hope we can agree on one of the above. 8) Oh, and you brits rule too. No pun intended jb |
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Title: Re: I've just been banned from the OUCH UK board!! Post by theoldboiler on Nov 2nd, 2005, 9:22pm on 11/02/05 at 21:09:06, majic wrote:
Richard You've been told endless times that I was the one who HELPED get the psilocybin research link onto the OUCH board and I had no say in it being removed some months later, Pink has always made it very clear that you attack the wrong person when you attack me as you have done in some very offensive personal emails as well as on here. Attacking the person who helped is a weird strategy. I'm done, I have more important things in my life than taking crap from someone so determined to see the worst. W |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 2nd, 2005, 9:39pm on 11/02/05 at 21:22:18, theoldboiler wrote:
That's the first time anyone has mentioned to me that you were the one you got that link onto the OUCH(UK) site and I wasn't even aware that it had been removed. So, no, I haven't been told endless times. Pink has sent me precisely one email about you and never told me I was 'attacking' the wrong person. Where you got this from I really don't know. As for offensive personal emails...well you can give just as good as you get now can't you. I'm not the one who wandered into this thread and started swearing am I? You always do this. You refuse to debate the actual topic...the censorship carried out by OUCH(UK) and seem to interpret any post directed at you as a personal attack, throw a hissy fit and flounce out again. How long before you leave this board again? Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by theoldboiler on Nov 2nd, 2005, 9:46pm Yawn! Right now if you like, at the moment I couldn't give two flying fucks |
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Title: Re: I've just been banned from the OUCH UK board!! Post by unsolved1 on Nov 2nd, 2005, 9:50pm Damn, they do have some censorship issues going on over there don't they!? Sorry we can't help you with that. Looks like you pissed off the people who make up the rules. And you got kicked out. Now what? UNsolved |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 2nd, 2005, 9:50pm on 11/02/05 at 21:46:51, theoldboiler wrote:
Don't let the door hit you on your way out ;) Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by theoldboiler on Nov 2nd, 2005, 9:53pm I'm only on here now listening to your boring crap because I'm awaiting a phone call from the USA. I'll delete myself when that comes through and I can go to bed if it makes you happy Richard Wendy |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Not4Hire on Nov 2nd, 2005, 9:55pm jeez den... why don't ya tell us how you REALLY feel? and DubyaDa Bee: a tempest inna teapot with majic... it seems to me yer on the same page ...but y'all have BOTH pissed in each other's corn flakes at some time in the past. Get OVER it. I heartily agree with what Rumple sez.... Quote:
and majic: I LIKE the idea of having these "trustees" (which, in America, are prisoners who gotta serve their time out, but are allowed to do stuff like go home on the weekend... WTF??) come on over to THIS forum--or to C'Busters, and tell us why they can't, at LEAST, make some reference to the *alternative* remedies that are available. now This: sorry ole Owl, but I think ya miss the point of the Imitrex debate.... Quote:
it's not that the synthetic is bad or doesn't work. It does...and it lines the pockets of some folks who could give a fuck less about the residual effects (or at least the ones that are legally actionable). It's more about the fact that a common fungus (and oxygen) are about 75% effective in dealing with this MOFO that steals so much from our lives. that's it fer me....n4 |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 2nd, 2005, 10:03pm on 11/02/05 at 21:53:42, theoldboiler wrote:
You do whatever you like....makes no difference to me. What would make me really happy would be OUCH(UK) telling their members about clusterbusters. Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 2nd, 2005, 10:06pm on 11/02/05 at 21:55:50, Not4Hire wrote:
They wont do this because they have no concrete reason for banning discussion of alternative remedies that would stand up to an open discussion. Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Lizzie2 on Nov 2nd, 2005, 10:12pm Well I will say this for the pharmaceutical skepticals among us....just for kicks :) I've got some pens and random shtuff from the makers of certain big name formula companies lying around here. And frankly, the only thing that ever made a difference in my desire for a kid to drink one or the other was how bad it smelled when they puked it back up... Haha That's probably not funny to most people. But if you had the week I did, well...formula puke is really as fun as it gets! We really have a long list of reasons for why various formulas are chosen, but at the end of the day, and this is the MOST important bottom line....it's about what's best for the kid. Not everything about pharma companies, docs, nurses, hospitals, etc...is corrupt. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Opus on Nov 2nd, 2005, 10:12pm on 11/02/05 at 20:45:26, Ueli wrote:
I will second that, I remind people that cyanide is natural and that you can die from drinking too much water. Most drugs are chemically similar to compounds found in nature. Since they cannot patent a natural compound, they must make there own. The benefit of this is that different companies can make different versions of the same compound, and people have a choice if one drug doesn't work for them. Opus/Paul |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Opus on Nov 2nd, 2005, 10:20pm on 11/02/05 at 21:53:42, theoldboiler wrote:
Wendy, I can understand your reasons for leaving again, even I who tries to see the best in posts saw Richard's as a direct attack on you for what is going on at OUCH UK. It is hard when you cannot get away from it. I hope you do well and keep in touch from time to time. Opus/Paul |
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Title: Re: I've just been banned from the OUCH UK board!! Post by TxBasslady on Nov 2nd, 2005, 10:26pm Richard, Here's you a solution....start your own board/discussion group. It's not that difficult. Direct whomever you wish to your board in order to discuss whatever subject you all please. This would be separate from OUCH/UK. Anyone can start there own...have you considered this? I mean....this is clearly a disagreement amongst the Brits..and OUCH/UK, but if you had your own board...then you make the rules. Why not consider that? You would have a free voice. I am not privey to UK Law. So, I don't know if this is even possible. But if you can buy the stuff legally...then I can't see why you would have a problem with a Clusterbuster discussion forum. Jean |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 2nd, 2005, 10:28pm on 11/02/05 at 22:26:28, TxBasslady wrote:
Perhaps you could explain to me how starting yet another CH board would reach those members of OUCH(UK) who have no access to the web? For those people their only source of CH information is OUCH(UK) who are the very people trying to keep clustbusters a secret from their members. Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by TxBasslady on Nov 2nd, 2005, 10:34pm Help me to understand..... How do they have access to OUCH/UK...if not via the web? It's a fact that there must be thousands of sufferers none of us are even remotely aware of. Mainly because they don't use the web...or even have pc's. Jean |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 2nd, 2005, 10:36pm Paul- you are one of life's sweeties. I'm not going anywhere at the moment as I'm still waiting here and need to keep my mind occupied while I do. Jean Regrettably most of what clusterbusters recommend isn't legal here either, but before Richard gets his knickers in a twist yet again and deliberately looks for something to attack, that was a statement of fact, not a debate or a defence of any OUCH UK stance. also we have OUCH Uk members who are not online, they rely on the Helpline, meetings and conferences and occasional newsletters. Wendy |
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Title: Re: I've just been banned from the OUCH UK board!! Post by TxBasslady on Nov 2nd, 2005, 10:41pm Not sure what "statement" you speak of. I know what's "legal" here....it's the UK I do not know the Law. We're talking about a plain old forum....just a place...for folks to go..just like Pink's site. Except it would be run by someone "across the pond". J |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 2nd, 2005, 10:50pm Sorry Jean, the statement was mine about the legality of shrooms, I just didn't want Richard to read it as anything other than a clarification for you of what the position is here. I can't see any reason why a UK shroom site wouldn't be possible either although early in its infancy clusterbusters suffered some "heat" and had to be hosted, would you believe the irony ;;D by a UK OUCH member for a while. I do also see Richard's point though that if someone is online anyway they can just come here or go to the CB site. What he is getting at is that OUCH UK is where CH sufferers go, and there is no shroom info on there. Wendy |
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Title: Re: I've just been banned from the OUCH UK board!! Post by TxBasslady on Nov 2nd, 2005, 10:53pm "Build it....and they will come." J |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Charlie on Nov 2nd, 2005, 11:05pm Rant away as far as I'm concerned. Shit we even We even let Don and Jonny advertise here. http://www.netsync.net/users/charlies/gifs/love spray.gif Charlie |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Mr. Happy on Nov 2nd, 2005, 11:40pm on 11/02/05 at 22:26:28, TxBasslady wrote:
Now _There's_ a novel idea. You can use the board at Mushys.com (http://mushys.com/phpBB/); I heard the owner doesn't give a fuck, and has no idea how admin controls work. Of course, that's no where near as important as Making One's Point. Right? Right? Won't Anybody Listen To Me? Shit. RJ ===== Wait. I'm not done yet. You fuckers would argue with a stump about dating, just because it was too heavy for the tide to take out. Shit. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Lizzie2 on Nov 2nd, 2005, 11:49pm Wendy, This should probably be a private message to you, but I'll write it here just the same. Do you think MOB would be completely opposed to allowing someone to post the link to the busters site instead of changing it into what Jonny discovered? I mean...then there's no discussion of it...just a link - even if someone had it in their sig. I dunno. I haven't been a member long enough to be able to really question the way it all works! But I can't see why someone posting the link would be a huge problem necessarily....I can see why discussion would be discouraged, but not sure how the link qualifies as illegal so long as its not an OUCH Trustee posting it? Just curious really! And I didn't forget your PM re: Frova. Sorry - things have just been all out of sorts here lately! We'll have to catch up soon. :) Carrie :) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by CHTom on Nov 3rd, 2005, 12:24am What is the status of the sub-occipital nerve stimulation surgery in the UK? Unless my information is no longer correct, the last that I read about this procedure, favored by Dr. Goadsby, was, in the vast majority of cases unsuccessful but it kept on being performed on patients in the UK. I can only recall one case in which the operation was reported as successful (though the patient still had to take meds and use O2 and had to have the surgery 2x); the rest of the patients either had no relief, had to return for multiple operations because of broken wires or wires coming loose and others had the lateral movemet of their heads severely restricted due to scar tissue, but the operation still kept on being performed. OUCH-UK appears at times to be like a church in which Dr. Goadsby is god and to suggest otherwise is heresy. Mind you, Dr. Goadsby is one of the leading experts in the CH field, but there are other doctors just as good and dedicated, something that the OUCH-UK establishment appears to refuse to recognize. Does anyone out there have current figures on the number of operations performed and what the success rate has been-and how many patients had to have further surgery due to complications from the first operation? Just wondering. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Racer1_NC on Nov 3rd, 2005, 1:06am on 11/02/05 at 23:40:44, Mr. Happy wrote:
I'm begining to think it's a cluster trait. Bill |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Pinkfloyd on Nov 3rd, 2005, 1:38am I feel the need to make this public posting. If it can cause you problems pubgirl, send me an email and I'll remove my post asap. I'll stay out of all the side issues (for now) but it is important for everyone that cares, to know that Wendy has been one of our biggest supporters and has gone above and beyond duty, fighting for Clusterbusters at OUCH UK. (At least as long as Clusterbusters has existed (2002)). Much of it behind the scenes which is the only place it IS debated over there. (as this thread attests) I can't blame anyone for all the misconceptions and misunderstndings over there, except for the censors, since it's impossible to get an honest read where people stand on the issue, when no discussion is allowed. :( It gives the impression that everyone involved in the administration is complicit. In my view, this is very unfair to the people there that disagree with the decision. BobW (Pink) BTW RJ, what do you have against stumps? ;) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Chuffy on Nov 3rd, 2005, 3:23am Jesus, I leave you all for 6 hours and Merry Hell breaks loose. [smiley=laugh.gif] Anyway, I'm glad you tried posting that link on OUCH(UK) as it totaly reveals their attitude. Probably Fudamentalist Christians...."Dinosaurs never exsited and thats a fact"......oh right! As Richard says it is very, very worrying that people with that perspective are in charge of the UK's OUCH site. Again, my dig wasn't at Glaxo but more at OUCH(UK) for their ATTITUDE towards potentially dangerous drugs, and before you all go off again, I used Cafergot for 13 years and it worked, and I thought it was manna from Heaven.............at the time. But the relief of discovering that I no longer needed to take the damn Cafergot, Imitrex etc because the Shrooms worked (for me) was just as important as fixing the CH itself. I used to get in some bad ways with the Cafergot, but hey I'm still alive. It didn't always work mind you and what do you do in the throws of a KIP 10 when what you took didn't work, that's right, take some more, dangerous ground. Overdose City. I hear about this a lot in the OUCH(UK) newsletter, strange that. My point is this and it's why I would like to sit down all the Sunday School Teachers that run the OUCH (UK) site and have a chat with them about it and/or wring their scrawny necks. If I take too much Cafergot, Imitrex I'm a dead man, fact. At best I'm in A&E. If I take too many Shrooms, which in fact I can't see why you would as they ALWAYS WORK (for me) and I'm not sure you can actually OD on them, Pink will know better on this. I would lay down for 5 hours, listen to some Beatles albums and sit in Abbey Road with them, commune with God (she's quite chatty when you are tripping ;;D), watch UFO's split the sky, see a reinactment of the building of the Pyramids by Hedgehogs, laugh like I have never laughed before, that sort of thing...oh yeah....and FIX MY CH. But one thing I definitely wouldn't be.................is FUCKING DEAD. Cased closed as far as I am concerned. 8) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 3rd, 2005, 3:35am Thanks you Bob, you are, as always, a "gent". Carrie, I'm afraid it isn't MOB's decision so he should be left out of any attacks on here too (not directed at you by the way Carrie, I know it isn't your style) Wendy P.S. Message to ch.tomhdido/john etc etc etc Play another record will you? You have been told so many times on here and over there (until you were banned after warnings for insulting posts and people via pm) that your information is incorrect and where it is factually correct it is "spun" (Mike as you well know is doing very well indeed after the ONSI and only had it twice because he was the original receiver of the first implant and had one side done first, second op' was to do the other side) but you keep posting the same words over and over on your pet rants about ONSI's and opiates. Anyone with half a brain, which I suspect you know (or maybe your "DBS" has caused you problems??) knows that PG is not hiding the ONSI results to date, he discussed them openly at our conference and the surgeon who performs them did also and showed a video of the procedure. The results are not published yet though, and that is utterly normal, not secretive. Anyone who knows PG also knows that he is the most open, inclusive and forthcoming person about what he is doing to help sufferers and what he is working on. He takes enormous amounts of time that I'm sure he cannot easily spare to keep us informed and even tells us things before they medical community have been told if he thinks it is helpful to us. No-one is claiming the ONSi is perfect, least of all him, but at least he is TRYING to find us a an answer to our pain. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by ghost62 on Nov 3rd, 2005, 3:44am Quote:
stuff about tripping Quote:
Actually you can and I can attest 2 buddies of mine died from OD, not at same time but all the same happened. I dont think you are trying to hurt anyone, I hope not at least but be careful what and how you phrase certian things. This is not an attack twards you but it is a reminder that sometimes words are dangerous. I hope that whatever works for you is a godsend and even though it is a miracle at the time everyone builds up tollerences to certian things and can lead to bad things, but not always. It also may have an adversed reaction to others. We are all different and deal with pain, meds, and life in general differently. My way may work for me your way works for you and so on and so forth. it may take a combination of things for others. Oh heck what do I know bye. Mike |
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Title: Re: I've just been banned from the OUCH UK board!! Post by zanychef on Nov 3rd, 2005, 3:47am i can only confirm what wendy has to say about PG being caring and concerned .. i sent an e-mail to the institute of neurology asking if they wanted to use me for any forthcoming trials and within 40 mins had a reply off PG himself a phone call 2 days later with the offer of being treated there:) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by LeLimey on Nov 3rd, 2005, 5:08am OUCH UK has rules you have to follow or you don't post there. Its as simple as that. There IS ch.com (Thank you God and DJ!) There IS OUCH US and there IS clusterbusters.com. Anyone who is on the internet can find all these resources. They do get talked about even if its behind the scenes at the UK site. My point is you pay your money you make your choice. You can be a member of OUCH without using the message board, the vast majority do. I've read it so many times here and its become something I live by.. Take what you need and leave the rest. I know what I can and can't discuss there, sometimes it frustrates me but I know I have choices. I have alternative places to go (like here) The simple fact is you have to modify your behaviour to the rules of the site you are on. I post very differently here, at OUCH UK and also at OUCH US. Its just respect. OUCH sites are the official face of Cluster Headaches. Sometimes I think our camaraderie which is in my opinion our greatest strength is also our Achilles heel... what other BIG charities like Diabetes or Cancer Research for instance would allow their members the freedom to post we have (On the OUCH sites) I know OUCH UK isn't as free as OUCH US but even so alot goes on there you wouldn't see on another charities site where they are run far more dictatorily. I'm not knocking anyone here, I don't want to get in any pissing matches. All anyone has to do is look at my post edited as used the wrong word |
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Title: Re: I've just been banned from the OUCH UK board!! Post by MOBster on Nov 3rd, 2005, 6:08am Thanks Andrew, It is refreshing when someone actually sees it how it is and does not try to put their own slant on things. As for the comments by Rob & Richard well what can I say. You can call us what you want both as a group or as individuals, we are used to it. That is what happens to people that actually get up and do something to help others. Also this topic has been discussed many,many times both behind closed doors(by the Trustees and Medical Professionals) and in the open, in fact on here. However it seems your idea of discussion is when we agree to do all that you demand regardless of the consequences for others. Not much of a discussion really. Richard you were not banned from OUCH (UK) you left of your free will but not until after a few nasty e-mails from you as a parting gift. Rob you seem to have missed the topic title of your post when you quoted it here, so let me help you out: Quote:
Sorry if I mistakenly took this as your wish to leave OUCH (UK) ? - as the Members Board is just that a Members Board your posting privileges were revoked. In fact the message you get when you try to enter the members board now says "You have asked to leave", is that not true also? I am sure the usual abuse, insults, and so on will follow as is usually the case, but hey I am grown up and can deal with that. I would just like to ask one question though for a change. Why do you use everyone else's message boards to discuss your opinions of others and your treatment? Why don't you have your own board where others can come and challenge you and your opinions and how you run things ? Why does it have to be a closed Yahoo group if you are all so ready for everyone else to openly admit bending or breaking the law? I have to say put up or shut up! Let the mindless insanity begin. Amend: it all ready has on this thread - what a suprise! Michael |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Beastfodder on Nov 3rd, 2005, 6:11am Sympathy to you over OUCH UK. I'm in such a similar situation to you - years of misdiagnosis, hatred of polypharmacy with stuff that makes you feel awful until realising there's one cure that works for me. Funnily enough it's the same stuff I used to have mad weekends on when I was a student. But you'd have to have been living on the moon not to notice how 'shrooms have changed in the UK over the past few years. Last year you could walk down Oxford St into a tourist shop and buy class cubensis mushrooms openly and so could kids. That's why the Governement made it a criminal offence to possess even fresh shrooms here and yes it is an arse of a law. Why on earth should the CH sufferers who run OUCH in the UK for the good of all sufferers and are legally responsible for the website's content put themselves on the line and jeaporadise the operation ? Why indeed they're abused like you've just done. Their support to me in getting O2 (which also works) was fantastic - and the time on the phone explaining why they have this stance in the UK, what other options are out there - and feedback from the likes of Professor Goadsby on 'Shrooms was really useful (basically do it if works for you, it's only the issue of schizophrenia he's worried about - in the same way that Skunk weed has the potential to make pschotic disorders more acute - especially in the under 18's when the brain is still maturing). If you were really wanted to be positive - start clusterbusters uk and be big enough to take the legal flak yourself. After we've all managed to get to here and clusterbusters and find the cure. OUCH UK has helped me and others - sufferers and their families and the people who do it, do it charitably and with good grace. I'll re-join this year and I'd absolutely join clusterbusters UK. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 3rd, 2005, 6:51am on 11/03/05 at 06:08:40, MOBster wrote:
Keeping the most effective treatment we have for CH, especially for chronic sufferers, a secret from your members seems to me to be a strange way of 'helping' people. Quote:
I have yet to see a discussion here, or anywhere else, where someone from OUCH(UK) states clearly and openly their reasons behind this secrecy and then debates it properly. This idea that you have that mentioning illegal drugs will get you all into some sort of legal trouble is just nonsense, and proveably so. There are many UK charities that quite openly discuss drug use without any legal problems; a quick search of the Charities Commission register of charities will find hundreds doing just that. Here is one example.... http://www.drugscope.org.uk/ have been handing out detailed drug advice for the last 37 years without any trouble descending on them. Here is their page on Magic Mushrooms by way of example, http://www.drugscope.org.uk/druginfo/drugsearch/ds_results.asp?file=\wip\11\1\1\magic_mushrooms.html Now, it seems to me that if one Charity can go into this amount of detail then other Charities should be able to do the same? Perhaps you can explain why this is not the case? Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by MOBster on Nov 3rd, 2005, 7:02am LOL ;;D |
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Title: Re: I've just been banned from the OUCH UK board!! Post by ben_uk on Nov 3rd, 2005, 7:07am on 11/03/05 at 06:11:19, Beastfodder wrote:
Hey Beast, I see that you are asking about clustermasx on another thread. Please can you tell me:- Where did you hear about clustermasx? I know it can’t have been from CULT. UK as the Cabal there keeps it secret from their devotees, and not only do they - electronically/automatically “change” any mention of the word but they also “red card” anyone who dares to try! :o |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 3rd, 2005, 7:10am on 11/03/05 at 07:02:14, MOBster wrote:
Is that really the only answer you can come up with? If you can't bring yourself to answer my question, then please explain why. Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by zanychef on Nov 3rd, 2005, 7:11am i too must say lol to the above post as it is a site designed for people to inform themselves about the NARCOTIC effects and legal matters pertaining to drug use and abuse!!! not a medicinal site or for use by people looking for remedies to ailments ch wasnt mentioned once!! |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 3rd, 2005, 7:20am on 11/03/05 at 07:11:54, zanychef wrote:
I think you're missing the point that I'm trying to make. If one charity is free to openly talk about drug use then so are others, whatever form that drug use takes (medical or recreational). If you'd rather I used a medical example then try searching for Multiple Sclerosis and cannabis, you will find many UK MS charities that are quite happy to discuss this. Again, if they can give details about using THC to control MS then why can't OUCH(UK) talk about hallucinogens and CH? Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by AussieBrian on Nov 3rd, 2005, 7:21am Pssst, Richard (can I call you Dick?) we have a saying here in Australia that roughly translates as "if you don't like my menu, cook for yourself". Certain comments by your friend Chuffy regarding his enjoyment of tripping suggest you're not so much reccommending a cure as pushing a hallucinogenic. I don't take kindly to that. As for showing showing our friend Pubgirl the door, I move the motion that she be allowed to hold it open for the pair of you and simply close it quietly after you've left. Will anyone second that? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 3rd, 2005, 7:21am Oh get real Ben, you know damn well how most OUCH UK members hear about the mask so stop being disingeneous. Insulting the person who makes OUCH UK possible is a daft way of trying to make your point. Wendy added: Is it just me, or do most people fail to realise that if they want to achieve something, attacking those who are able to help is the most crass and stupid thing to do. Certain clusterbusters members never learn, despite Bob's sterling example, that guerilla tactics get nowhere, and now Ben seems to heading in that direction too which I find sad as I am a fan. Maybe I'm the mad one, but it seems every time a bridge is built or a door half opened, someobne attacks, hacks or insults and demeans and the door slams shut. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 3rd, 2005, 7:32am on 11/03/05 at 07:21:19, AussieBrian wrote:
Call me whatever you like, I don't mind ;) Quote:
I'm not pushing anything. All I'm doing is arguing that people should be allowed to see the information and decide for themselves. Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by MOBster on Nov 3rd, 2005, 7:54am Ben, I think you had better talk to Mike Pollock privately regarding a meeting on the 25th Oct before you start digging a hole for yourself. Richard, The only person missing the point is you. There is a great deal of difference between a site discussing the side effects of using drugs and a site advising people to take them. But then again you knew really didn't you. Michael |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 3rd, 2005, 8:03am on 11/03/05 at 07:54:56, MOBster wrote:
Firstly, AIUI, the stance taken by OUCH(UK) is that any mention of drugs is going to get you into some sort of legal troubles. This is clearly not the case. Secondly, I am in no way suggesting that you advise people to take any drugs, licit or illicit, all I am arguing for is that you provide your members with the information to make up their own minds. Please explain to me the problem with doing this. Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by MOBster on Nov 3rd, 2005, 8:07am Hi Richard, We have, you didn't want to listen..... Next.... Michael |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 3rd, 2005, 8:16am on 11/03/05 at 08:07:40, MOBster wrote:
If you've already done this, why not just provide a link or cut'n'paste it here so we can all see and talk about it.... Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by MOBster on Nov 3rd, 2005, 8:25am Why Richard? You must remember, it was an e-mail to you the last time we had this discussion. You didn't like our response so you left OUCH (UK), you can't have forgotten already can you [smiley=huh.gif] Michael |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 3rd, 2005, 8:30am on 11/03/05 at 08:25:04, MOBster wrote:
Why are you continually evading my request? I've now asked you three times just to post OUCH(UK)'s reasons for censoring this information so that we can talk about it and each time you've avoided the issue. It really is beginning to look like you have something to hide... Richard Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by LeLimey on Nov 3rd, 2005, 8:35am Well lets put this all in context shall we? Chuffy has been a member here since Nov 02. 36 months and 43 posts. Majic has been here since March 04 19 months and 41 posts. Chuffy has made 9 of his 43 posts to this thread which is roughly 25% Majic has made 20 posts to this thread which is pretty much 50% of his post total. They rarely contribute anything, aren't around to support anyone else and are only here now with the intention of stirring up ill will. Take your toys and go home little boys. The grown up's want to talk now |
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Title: Re: I've just been banned from the OUCH UK board!! Post by MOBster on Nov 3rd, 2005, 8:43am I am not evading anything Richard you are. We have answered this so many times, you had your own personal response and this is still not enough. I have and keep answering your questions. I have only asked one which you seem to have missed. Here let me help you: Quote:
I would also like to add another one now (amazing what happens when you have time to think whilst you are waiting) Why do you guys assume that CH sufferers are stupid? I mean ANYONE who wants to know how to manage their CH will do a search for "cluster headache treatments". Just try it above and see, it's really quite simple. Obviously the next stage for OUCH (UK) is to gag the search engines so that our members can suffer some more. After all it's their fault they can't act freely or think for themselves and do a SIMPLE search on ANY search engine? Nah! way too complicated for an everyday CH sufferer that one - jeez! Michael |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 3rd, 2005, 8:44am on 11/03/05 at 08:35:48, LeLimey wrote:
Are you really saying that we have to have a certain number of posts on this board before we can have an opinion on something? Are you really saying that it's OK to keep the most effective preventative treatment we have available a secret from people who are in pain? Why do you have to drag the discussion down by trying to patronise and insult people? Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by zanychef on Nov 3rd, 2005, 8:44am i second the motion....... passed by order of me;):P majik the fact is the people here know about the positive results of shrooms some people are having the info is freely availiable here yours and chuffys problem seems to be with ouch(uk) which apparently you have both left of your own free will!!! take up your issues with them! not post the same S$$t on 2 diff threads on here >:( we all have the same debilitating condition here i have found a place to not only research into different medications/alternatives etc but a place where i feel at home ;;Dand can have lively discussions on matters not slagging matches >:( also there is a lot of support here for matters not just pertaining to ch ;;D we are all in this together try helping not just getting on a high horse please yours a v. disgruntled zany |
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Title: Re: I've just been banned from the OUCH UK board!! Post by seasonalboomer on Nov 3rd, 2005, 8:46am on 11/03/05 at 08:35:48, LeLimey wrote:
Helen, I want you on my team for any pissing match!!! Now that's good research, I don't care who ya are. ;) Scott |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 3rd, 2005, 8:47am on 11/03/05 at 08:43:09, MOBster wrote:
Yet another evasion. Again, why not post your reasons here, openly, and engage in an open discussion? Quote:
What about your members who have no net access? Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by LeLimey on Nov 3rd, 2005, 8:53am on 11/03/05 at 08:44:12, majic wrote:
Not at all.. but why post here slagging off OUCH UK when you never post about anything else if its not to stir? Quote:
Where have I said that dicksplat? Don't put words in my mouth, you aren't clever enough Quote:
Oh.. so you can dish it out but you can't take it huh? Hold on.. I'll just go and get my violin so I can play you a really sad song. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by MOBster on Nov 3rd, 2005, 9:03am Just as I thought Richard ::) I'm done with you.......... Going back to keep the 1400+ dumb OUCH (UK) members in pain and sufferering by not telling them about THE only treatment. Get over yourself already. Michael |
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Title: Re: I've just been banned from the OUCH UK board!! Post by unsolved1 on Nov 3rd, 2005, 9:07am on 11/03/05 at 09:03:45, MOBster wrote:
what is "the only treatment"? Clusterbusters? While it may help some, it is NOT the only treatment. UNsolved |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 3rd, 2005, 9:07am on 11/03/05 at 08:53:52, LeLimey wrote:
I'm not slagging off OUCH(UK), I'm trying to challenge them on theirr nonsensical attitude to clusterbusters. Do you not want to know why they think it's a good idea to censor information? Quote:
I didn't put words in your mouth I just asked you a question. Perhaps you should clean out your potty mouth, stop using foul and abusive langauge and provide me with an answer.... Quote:
Now whose being childish? Perhaps you could point out where in this thread I've had to resort to name calling and swearing? Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by BobG on Nov 3rd, 2005, 9:08am Dang! Is this War of the Words open to Americans? Haven't seen this many British flags flying since back in the 1700's. You want my opinion about all this? Well, you ain't going to get. Yet. ;;D |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 3rd, 2005, 9:10am on 11/03/05 at 09:03:45, MOBster wrote:
Yet another evasion. Why are you so scared of an open discussion about this? Noone has ever claimed that clusterbusters is the only treatment, but from the figures available to me it does seem to be the most effective. Again, why are you so reluctant to engage in a proper discussion about this? Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by zanychef on Nov 3rd, 2005, 9:10am sure you can join in bob i'll just adopt you as a cousin i wouldnt bother though coz its got silly now ;) btw your opinion would be valued by at least some of us ;;D |
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Title: Re: I've just been banned from the OUCH UK board!! Post by BobG on Nov 3rd, 2005, 9:19am on 11/03/05 at 09:10:46, zanychef wrote:
Thanks Cousin Zany. Here's my opinion.......... This is about the longest thread about nothing I've ever seen in all my weeks at this website. But, I did once look into the OUCK (UK) site. It was great! Caused me to have the best nap I've ever had. ;) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Sandy_C on Nov 3rd, 2005, 9:20am on 11/03/05 at 09:08:10, BobG wrote:
Do we need to start another revolution? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by zanychef on Nov 3rd, 2005, 9:23am i think maybe the chatroom would have been a good place for it ;) we wouldnt have to read it over and over and over ;) also it wouldn't have shown that i cant work out how to use the qoute button :-[ |
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Title: Re: I've just been banned from the OUCH UK board!! Post by zanychef on Nov 3rd, 2005, 9:36am :-[ :-[ i've tried and ive tried and still quoting eludes me :-[ |
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Title: Re: I've just been banned from the OUCH UK board!! Post by BobG on Nov 3rd, 2005, 9:37am on 11/03/05 at 09:20:26, Sandy_C wrote:
I'm cool with that. George vs Tony, I would have said George vs the Queen but George would have gotten his butt kicked. 8) |
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Title: the whites of their eyes Post by rumplestiltskin on Nov 3rd, 2005, 9:38am You can call these guys names and shit and drag their reputations through the mud and act all superior to them....BUTT ...and I really wish they I could fax them my hard skin so they didn't get sucked into your smoke and mirrors bullshit while you drag them conveniently off the subject. some of us are watching ANY site claiming info about CH that does not link or discuss Shrooms has lost their purpose. It is not they who need to start another site. I take great offence at any site using the OUCH name that refuses to link or discuss what so many clusterheadache sufferers have found that provides both or either pain relief and cycle cessation. OUCHUK is so well organized...when they spoke at the Atlanta OUCH cornvention they were so impressive. Bottom fucking line is stopping CH pain. This American charter member of OUCH says...shame on you OUCH UK. Find a way to link and/or discuss shrooms or find another name. love den |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Slammy on Nov 3rd, 2005, 9:38am 1st of all, I would like to thank our brothers and sisters from the other side of the pond for a thoroughly good read! I have not laughed this hard reading a thread in the 5 years I have been around here, or at least since last month, anyways.[smiley=laugh.gif] 2nd of all, Wendy..... you got Slammy twitterpated with your "piss off' rant! :-* anyway, bash away! ;;D Slammy 8) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jeepgun on Nov 3rd, 2005, 9:41am As far as I know, shrooms are a Class A offense in the UK, which carries a mandatory MINIMUM of ten years in prison, even if all you have is enough for your own use. For OUCH UK to sanction a felony, would be the equivalent of shooting itself in the foot, and it also would damage their credibility and relationship with Dr. Goadsby and other relationships that they've been able to cultivate. In light of this, their decision to keep the shroom info off of the OUCH UK board is a sound one. Why not set up a separate website, the way that Clusterbusters has done? If you're that upset over it, wouldn't your energies be better spent in that direction? My tuppence' worth..... -Frank |
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Title: Re: I've just been banned from the OUCH UK board!! Post by AussieBrian on Nov 3rd, 2005, 9:42am on 11/03/05 at 08:44:12, majic wrote:
Little wonder you were barred. You're not just an idiot, you're a dangerous idiot. Important message to all new-comers. You are perfectly welcome here and we can offer you much advice and support. Please understand that not all opinions voiced here are those of the majority. Censorship is delightfully lax. Make the time to take the Cluster Quiz over on the left and ask all the questions you want answered. We're not doctors, but between us we have bundles of information and we're happy to pass it on. As grown-ups you'll have no problem sorting the wheat from the chaff, and welcome aboard. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by zanychef on Nov 3rd, 2005, 9:44am i second that one too jeep ;;D and i dont think the dirty laundry needs to be hung out here either! btw can anyone show me how to quote? ;) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Slammy on Nov 3rd, 2005, 9:47am on 11/03/05 at 09:44:03, zanychef wrote:
Like this! [smiley=laugh.gif] Slammy 8) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by zanychef on Nov 3rd, 2005, 9:49am very helpful slammy and i quote' [smiley=laugh.gif] ' |
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Title: Re: I've just been banned from the OUCH UK board!! Post by zanychef on Nov 3rd, 2005, 9:49am on 11/03/05 at 09:49:06, zanychef wrote:
i did it!!!!! ;;D ;;D ;;D |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Slammy on Nov 3rd, 2005, 9:52am on 11/03/05 at 09:49:48, zanychef wrote:
no, you just quoted yourself... that's illegal, and does not count. 10 yard penalty, replay the down~ ;;D Slammy 8) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by zanychef on Nov 3rd, 2005, 9:55am on 11/03/05 at 09:52:09, Slammy wrote:
do i get a free kick now? ;;D ;;D |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Drk^Angel on Nov 3rd, 2005, 9:58am Is it tea time yet? PFDAN.................................... Drk^Angel |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jeepgun on Nov 3rd, 2005, 10:00am on 11/03/05 at 09:58:36, Drk^Angel wrote:
"Lord preserve us an' protect us!! We' been havin' whiskey for breakfast!" [smiley=me&mb.gif] |
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Title: Re: I've just been banned from the OUCH UK board!! Post by zanychef on Nov 3rd, 2005, 10:01am on 11/03/05 at 09:58:36, Drk^Angel wrote:
sorry Drk^Angel the cricket season is over no breaks for tea;) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 3rd, 2005, 10:02am on 11/03/05 at 09:42:38, AussieBrian wrote:
Well let's look at some figures shall we instead of flinging insults? From the cluster survey on this site we can see that the best named preventative (prednisone) works for 9% of respondents. The second best (verapamil) works for 7%. Now, according to figures I have seen discussed wrt to the clusterbusters treatment it works for about 75% of those who try it and report their results. Now, Brian, perhaps you could tell me which seems to be the most effective? In fact, if you add up all the preventative treatment %'s it only comes to 37% of respondents. Roughly half the rate of clusterbusters. Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by rumplestiltskin on Nov 3rd, 2005, 10:06am I'll be happy to muddle this further If you can support "freedom" fighting...and you know what I'm referring to. How can you not support an effort to end a CH...whatever the legalities or bullshit bookeeping or red tape surrounds it. Lets see just what kind of "freedom" you all will cross an ocean to fight for. Granted...there are no oil wells to gain or muslims to bring to jesus in this fight... It's simply "freedom of speech" to simply say "hey...a lot of CH sufferers have stopped their CH with this" I can't do shrooms because of the legalities...butt if my CH friends can stop a CH with it...let no one with CH be without this information. Love den |
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Title: Re: I've just been banned from the OUCH UK board!! Post by marty on Nov 3rd, 2005, 10:06am Banned from the OUCH UK.. Looking for a new audience - went to OUCH US.. Next step ought to be the German site - they would suite just fine for you since they are already very advanced in your kind of posting dis-content for others to read (laugh at).. [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] Keep posting, this is so much fun ;;D Marty |
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Title: Re: I've just been banned from the OUCH UK board!! Post by zanychef on Nov 3rd, 2005, 10:07am on 11/03/05 at 10:02:53, majic wrote:
richard the point is you left ouch because of your differences with the 'management' on this site the facts are obtainable ;;D there is also a link form ouch(uk) to here so how about dropping the whole thing here and tripping out somewhere else! ty |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 3rd, 2005, 10:11am on 11/03/05 at 09:41:14, Jeepgun wrote:
Wrong. Please check your facts before trying to fighten people. If you had bothered to check you could easily have found the Home Office page listing drug penalties and found out that there is NO mandatory minimum sentence for possession of a Class A drug. Here, http://www.homeoffice.gov.uk/drugs/drugs-law/Class-a-b-c/?view=Standard Quote:
Noone is suggesting that OUCH(UK) should sanction a crime but since other charities apparently find it perfectly OK to discuss Class A drug use I fail to see why OUCH(UK) think they should be an exception. Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 3rd, 2005, 10:17am on 11/03/05 at 10:07:07, zanychef wrote:
It would be easier to answer you if you could manage to write coherent sentences but I'll try. Again, what about those members of OUCH(UK) who have no net access? They do exist, as Wendy stated in an earlier post. These people rely on OUCH(UK) for information, who are the very people determined not to tell them about clusterbusters. Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pattik on Nov 3rd, 2005, 10:21am on 11/03/05 at 09:20:26, Sandy_C wrote:
Yep, I think it's time. ;;D Wow, three new pages, just since I signed off last night. Although, it's been pretty darn good entertainment. I think us colonists should all go over to OUCH-UK and pick a fight with each other on THEIR soil, take up their valuable bandwidth and see how they like it. Time to start ignoring this thread now. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by zanychef on Nov 3rd, 2005, 10:22am the only way i got to hear about ouch at all was on the net............. and if it is the problem of the newsletters not saying anything about it then surely posting on ouch uk's boards and here then how is it going to help those who dont have net access?? as for my grammer and probs typing i'm doing it one eyed at the moment >:( |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Drk^Angel on Nov 3rd, 2005, 10:22am Cricket? Oh yeah... Has something to do with ashes or sumptin' doesn't it? Sounds very messy. :P PFDAN.............................. Drk^Angel |
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Title: Re: I've just been banned from the OUCH UK board!! Post by ghost62 on Nov 3rd, 2005, 10:23am [smiley=argue.gif] Can someone bring the popcorn? this is a pretty good show! 8) ;;D |
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Title: Re: I've just been banned from the OUCH UK board!! Post by zanychef on Nov 3rd, 2005, 10:25am on 11/03/05 at 10:22:31, Drk^Angel wrote:
cant be that messy the all play in white;) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Drk^Angel on Nov 3rd, 2005, 10:28am Maybe the ashes are white... Sorta like why the Brits wore red coats and all of that. PFDAN................................. Drk^Angel |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Margi on Nov 3rd, 2005, 10:35am my 2 cents: OUCH UK has made a rule and is sticking by it. That's totally their right to do that and they continue to be one of the most, if not THE most professional OUCH organization we've seen to date. Seems to me that lots of UK folks are still able to find the shrooms to treat their CH pain, with or without OUCH UK's support. It ISN'T the be-all and end-all of cluster treatment for everyone - sadly, nothing is. I'm still just amazed that SlammyJim said "twitterpated". Leaves one with a sharp mental image. ;;D |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Slammy on Nov 3rd, 2005, 10:42am on 11/03/05 at 10:35:22, Margi wrote:
As long as it is not a "sharp metal image" ;;D Who luvs ya! :-* Slammy 8) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Margi on Nov 3rd, 2005, 10:44am on 11/03/05 at 10:42:01, Slammy wrote:
nope. It's more of an image of ....... naw, better not go there. ;) :-* |
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Title: Re: I've just been banned from the OUCH UK board!! Post by AussieBrian on Nov 3rd, 2005, 10:46am on 11/03/05 at 10:02:53, majic wrote:
Yes, Dick, but let's look at all the figures not just those that suit your particular hobby-horse. I note with interest you never mentioned O2, relaxation therapy, tens machines, dietry adjustments, ice-packs or even the famous frozen-banana treatment - all of which are drug-free. You're flogging one alternative (unproven) treatment as the perfect cure and I'll happily insult you until the cows come home. I've no doubt that your 'cure' is perfect for some, but only an idiot would say it works for all. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Chuffy on Nov 3rd, 2005, 10:47am on 11/03/05 at 07:21:19, AussieBrian wrote:
Well there's a great attitude!! I would like to point out that I do not 'trip' recreationally, only for CH killing purposes. I am not pushing drugs but I am pushing the thing that kills this bastard CH. But God forbid that in our hands we actually have something that kills the beast........stone dead(as if that alone isn't enough), but is also highly enjoyable, we will have none of this, "we are SUFFERERS and SUFFER we will, at all costs", I hear you cry!! God, if she exists, ;) must be up there thinking, " I gave them the cure and they don't want it, funny lot humans" It's also odd that the way CH and suicide are banded around as though it's a right of passage, "they are so bad I nearly shot myself" etc. etc ad nauseum. But apparently they are not bad enough to risk a jail sentance over. What a load of old cobblers, Cobber. ::) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Slammy on Nov 3rd, 2005, 10:47am on 11/03/05 at 10:44:10, Margi wrote:
ohhhhh let's! Slammy is going through withdrawls out here! :P Slammy 8) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Margi on Nov 3rd, 2005, 10:50am Damn, Jimmy. You're still a cutie. Even more so when you're twitterpated. ;) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 3rd, 2005, 10:54am on 11/03/05 at 10:46:40, AussieBrian wrote:
Firstly, nowhere have I ever claimed that clusterbusters worked for all. That is an absolute classic straw man attack and a terribly weak debating technique. Secondly, instead of just listing the many and varied non-drug treatments that poeople use why don't you produce some figures to show just how effective they are. Again, another straw man...do you not know any better than that? Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jeepgun on Nov 3rd, 2005, 10:57am *yaaaaaaaaaawwwwwwwwwwwwwnnnnnn* |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 3rd, 2005, 10:58am Sorry another brief visit from a Brit :-[ Aw Slammy, do you like bad words with a British accent? I had to look up twitterpated and got this: "Thumper was the second to be twitterpated. Owl warned them, "you're walking along, minding your own business, and all of a sudden you run smack into a pretty face." Miss Bunny was certainly a pretty face and it looked like Thumper was on his way to be weak in the knees and light as a feather" Slammy image Margi "weak at the knees and light as a feather" ;;D Wendy |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Margi on Nov 3rd, 2005, 11:01am PERFECT, Wendy! Thank you for putting it into words. ;) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Cathi04 on Nov 3rd, 2005, 11:07am wENDY! pERFECT! lOGIC FROM wINNIE THE pOOH! "Christopher Robin will know how to fix this thread.........why, I'll just get this honey jar off my head and go find him......."..........oh, Tigger, oh Eeyore........... |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Slammy on Nov 3rd, 2005, 11:24am Yep! perfect! Wendy, Exactly! Bad words with a Brit-ish accent makes Slammy weak in the knees and light as a feather, as well as <blank> as a rock! Google that one! ;;D Slammy 8) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Opus on Nov 3rd, 2005, 12:05pm on 11/03/05 at 11:24:23, Slammy wrote:
Why Google, the word blanks fits quite well;;D Blank, n. 6. Lacking animation and intelligence, or their associated characteristics, as expression of face, look, etc.; expressionless; vacant. "Blank and horror-stricken faces." --C. Kingsley. 1913 Webster Opus/Paul |
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Title: Re: I've just been banned from the OUCH UK board!! Post by LadyElaine on Nov 3rd, 2005, 12:08pm I know a lot of people who do the shroom for clusters and I also know a lot of them that do shrooms when they are out of cycle. Makes me wonder a lot of things ::) As far as the UK OUCH goes. I wish I was in the UK and could join their group. I think they do a great job. I am very Proud they have the OUCH name. I think any Org and web site should have rules and the people that go there should obey them. If you don't like the rules. Then leave, if you break them expect to be removed. I have never taken shrooms. I would never take them. For several reason, one its against the law, who wants to be behind bars with a cluster not me. Two imitrex worked for me when I couldn't take it O2 worked, why would I want any drug when o2 works? I spent my last cycle without any thing. It hurt like hell and I went through hell but I would reather hurt than take a drug like shroom. I fear drugs more than clusters. Besides just knowing where it grows turns me off. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by CHTom on Nov 3rd, 2005, 12:12pm Quote from Wendy/Pub Girl, etc., etc., etc.: P.S. Message to ch.tomhdido/john etc etc etc Play another record will you? You have been told so many times on here and over there (until you were banned after warnings for insulting posts and people via pm) that your information is incorrect and where it is factually correct it is "spun" (Mike as you well know is doing very well indeed after the ONSI and only had it twice because he was the original receiver of the first implant and had one side done first, second op' was to do the other side) but you keep posting the same words over and over on your pet rants about ONSI's and opiates. Anyone with half a brain, which I suspect you know (or maybe your "DBS" has caused you problems??) knows that PG is not hiding the ONSI results to date, he discussed them openly at our conference and the surgeon who performs them did also and showed a video of the procedure. The results are not published yet though, and that is utterly normal, not secretive. Anyone who knows PG also knows that he is the most open, inclusive and forthcoming person about what he is doing to help sufferers and what he is working on. He takes enormous amounts of time that I'm sure he cannot easily spare to keep us informed and even tells us things before they medical community have been told if he thinks it is helpful to us. No-one is claiming the ONSi is perfect, least of all him, but at least he is TRYING to find us a an answer to our pain.[/quote] I do not know who you think that I am, but in any case, how many of the operations have been performed and of those how many are considered successful-I suppose defining successful as the person who had the operation having none or extremely few severe CH attacks (shall we say 5 out of 7 days pain free or almost so and able to function normally). I'm just asking for information-if you have the facts, just state them and if you don't have them or don't want them made public here and now then say that, but please don't avoid the question. Just because someone is "trying" to help someone that doesn't mean that they are-so, if you've the courage, let us see the figures or give a link where I and others can see them for ourselves. There is no need for you to get nasty-I am neither impressed nor "frightened" and in my experience, when someone engages in such tactics in response to a simple question then that person is hiding something-of course, not you. Answers please if you have them. Thank you. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by dirky on Nov 3rd, 2005, 12:34pm Hello chaps. My, what a thread, I just thought I'd add some serious input. My own opinion of OUCH UK's stance prior to the new law making fresh psilocybe mushrooms was one of dissapointment. Even months prior to the legislation while the UK home office were publishing documents stating that "fresh magic mushrooms are not ilegal" OUCH were still censoring discusion. It is interesting to note that OUCH UK's details held with the charities commision ( http://www.charity-commission.gov.uk/registeredcharities/showcharity.asp?remchar=&chyno=1091919 ) states quite clearly that they operate inside and outside England and Wales (Europe/United KIngdom), and the objectives of the charity are: Quote:
So, just because of a (relatively new) law, in only part of the area that they are legaly registered as operating in, they are withholding information and not fully supporting research in what would seem to be a most promising area of treatment. remember, as the UK govgernment's own drugs information website stated "talking about drugs is not illegal" BTW, this bit may seem churlish, but when are OUCH UK going to get the accounts for 01 Jun 2003 to 31 May 2004 submitted to the charities commision, They have them listed as overdue. Wether it's correct or not, the fact that it is there in the public domain is not a very good indicator of OUCH UK's competance. TTFN - derek |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 3rd, 2005, 12:39pm I agree with everyone who say this has got very boring. Every single little woodlouse with a gripe, serious or petty against OUCH Uk is crawling out of the woodwork now. So I shall just swear and give Slammy the horn ;;D. Fuckety fuck fuck bum Wendy |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Slammy on Nov 3rd, 2005, 12:43pm on 11/03/05 at 12:39:30, pubgirl wrote:
yeah Baby!!!!!!!!!!!!!!!! :-* Shaaawing! :P Slammy 8) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Wendy on Nov 3rd, 2005, 12:44pm Must be something with the name "Wendy"?????? Wendy/USA ;;D ;) Hi, pubgirl |
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Title: Re: I've just been banned from the OUCH UK board!! Post by john_d on Nov 3rd, 2005, 12:45pm If I was British subject I would be in favor of freedom of speech on the OUCH-UK site, and if I felt strongly enough about it I would try to get people elected who would support that freedom because that is the only possible recourse. I'm not either. I can wish you luck though. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 3rd, 2005, 12:49pm Well maybe this will make it more interesting :) This is copied from the other thread on medications, treatments, and therapies. Please note that I hadn't seen this thread when I posted the stuff about late filing the accounts. However I have added the information on the fines and late filing penalties that OUCH (UK) is subject to. In a nutshell at least £1000 of it's donations will now go towards paying this fine. WELL DONE! Here's the copied part: Heh heh it's worth coming back to post just for this one thread. The rest of the threads here I'm still leaving alone, as my absence seems to help keep the peace! So on to OUCH (UK)... As OUCH (UK) had hoped, shrooms are now illegal in the UK. Prior to that they were only illegal in OUCH (UK). BUT it is NOT against the law to talk / write about them. If you don't believe me then you can try engaging a policeman in a conversation about shrooms. Guess what? He won't arrest you! You can also try writing to your Chief Constable about shrooms. Guess what? You still won't get arrested. You can paint the words "I LOVE MAGIC MUSHROOMS" on the roof of your house. Guess what? Still free to roam at large immune from the threat of prosecution. The ONLY place it is 'illegal' *ROFLMMFAO* to discuss shrooms is OUCH (UK). All that stuff about OUCH (UK)s legal advisers is made up crud. It's PHONEY. Want to check? Well I have easily and independently verified that nobody is going to close down their website or message board, remove their charitable status, prosecute them, or sue them for permitting discussion on shrooms. And the chances of the same happening with RC seeds or HBW are less than zero. Let's just be quite clear on this. My sources? The Home Office (our equivalent of the State Department), the Charities Commission for Engalnd & Wales, and also a litigation expert than I independently consulted off the record. The Home Office: "It is within the law to discuss illegal drugs." The Charities Commission: "It would have no impact on the charitable status of OUCH (UK), if their message board contained references to illegal drug taking, or use of banned substances. We are aware of other charities where this already occurs". The litigator: "Provided OUCH (UK) published a disclaimer, there would be no basis for a lawsuit, public or private prosecution against them". So last time I checked I was still living in the free half of the globe Weird huh? Anyone can confirm likewise BTW. Please be my guest! Meaning that OUCH (UK) can also easily check this themselves first hand. It only took me couple of hours on the phone. I have kept my actual sources anonymous because it wouldn't be fair to expose them to an Internet bun fight. So let's speculate on the real reasons for OUCH (UK) banning all discussion on shrooms, RC seeds, and HBW? Could it be that the strong personal right wing views of certain people in positions of power within OUCH (UK) are being foisted on the rest of us? This would not be a problem, except for the fact that OUCH (UK) lays claim to be the voice of people with CH in the UK. Worse still I suspect that had OUCH (UK) lobbied against the change to the legal status of magic mushrooms FOR CONFIRMED CH SUFFERERS, then there's a good chance that the plight of people with CH would have received wider attention. We may even have been granted some dispensation. For those that do not consider this to be a big deal, then let's examine an alternative scenario. Imagine if shrooms had been found to cure cancer, but in their infinite wisdom the people in charge of the 'offical' cancer charity had taken the same stance as OUCH (UK), and denied people their chance of life in order to comply with their own agenda. Fuck me... there'd be an outcry. Wouldn't there? Of course the standard response these days is the "Go build your own website!". We have done, it's at www.clusterbusters.com, and all OUCH (UK) has to do is link to it with a disclaimer page inserted in-between,a nd permit open discussion of ALL treatments. Also try typing in anything with clusterheadaches and UK into your URL line and it forwards you to OUCH (UK)... looks like they got the registrations all sewed up! So everytime I think of some chronic out there in the UK, suffering every day for the past 7 years that this information should have been widely available... you know what I wonder? WHO ARE THESE SICK FUCKS? My grandfathers fought a war to get rid of shit like that. *** http://www.charity-commission.gov.uk/registeredcharities/showcharity.asp ?chyno=1091919 Check out Objects. Try reading it more carefully. And also note that your accounts are more than 2 years out of date. So much for the law eh? Just so that OUCH (UK) members are aware, that means they have inccured a fine in excess of £1000. Seriously. That's where some of your donations have gone to. AWESOME! *** Information on late filing penalties: http://www.companieshouse.gov.uk/about/gbhtml/gba5.shtml |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Slammy on Nov 3rd, 2005, 1:03pm Hey Flash! That was one of the most articulate, common sense posts I have seen on this subject. I'm not a stakeholder in this subject but, great post. I also nominate " Foisted" as the word of the day! :D Slammy 8) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 3rd, 2005, 1:04pm Hi Wendy [smiley=hiya.gif] Hey Slammy If USA Wendy swore at the same time as me, would that make a kind of "porn twins" moment for you? Wendy |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Slammy on Nov 3rd, 2005, 1:11pm on 11/03/05 at 13:04:43, pubgirl wrote:
Only if you were both in the same room and it was whispered in both of my ears, simultaneously..... and... and...... heheh... ;) Slammy 8) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 3rd, 2005, 1:24pm For the record I was banned from OUCH (UK). At the time I was banned shrooms were legal in the UK. The post I got banned for did not infringe any of OUCH (UK)'s rules, they just didn't like it. I did not get a yellow card, just an instant ban, and a nasty email from them. Also it should be noted that both HBW and RC seeds are still legal in the UK, and that OUCH (UK) has not published any rules regarding discussing those, but they do delete any posts on these subjects and they do threaten to ban people that attempt to discuss them, even in the most cryptic terms. It is amusing that every time someone takes OUCH (UK) to task on this board, we are informed that they were just about to change their policy, but have decided not to do so due to the aforementioned post. Every. Single. Time. The big issue here is that OUCH (UK) represents itself as the official mouthpiece for UK CH sufferers. It's not just as some dude/dudette that has set up his/her own amatuer website. The other big issue here is that they have deliverately mislead everyone about their reasoning behind this policy. As majic has correctly pointed out, there are active UK charities that do nothing but talk about illegal drug taking - in fact that is what they are set up to do, and this information is even provided in their offical charter LMAO! So OUCH (UK)'s stated reasons are completely bogus. They are not being straight with us. The issue of incurring a £1000 (or more) fine, and even risking being closed down by being so late with filing their accounts. Put it this way, they will already have received in writing, separate warnings from Companies House (a branch of the UK government) that they have been fined £100, then £200, then £500, and then £1000. So this is really gross incompetance of the highest degree. Unless they do file there accounts soon then they will be STRUCK OFF. In other words they pertain to be concerned that someone mentioning shrooms will result in their being struck off, but are persistently, and despite at least 12 official written warnings, late in filing their accounts, which is a legal requirement. That is incredibly unproffesional. And all their board of Directors who are so concerned about being taken to task for permitting disucssion on shrooms, will be barred from holding directorships in the UK for a period of time. Do these people really deserve to be running OUCH (UK). I montion that OUCH removes their charter. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 3rd, 2005, 1:24pm Oh Slammy Shucks, I can't even manage a webcam ;) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 3rd, 2005, 1:27pm on 11/03/05 at 13:24:22, Flash wrote:
Are you labouring under some kind of delusion that OUCH UK needs OUCH US's permission to use the name OUCH? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Slammy on Nov 3rd, 2005, 1:29pm on 11/03/05 at 13:27:23, pubgirl wrote:
It's the 'shrooms man! They do it everytime! ;) Slammy 8) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Bob P on Nov 3rd, 2005, 1:42pm I don't believe that OUCH-UK has a charter, nor do I believe they need one. All of the OUCHs are separate, independant entities. OUCH can't even take the name OUCH away. It is registered as our service mark in the USA but not internationally. Hey Flash, good to see ya. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 3rd, 2005, 1:42pm on 11/03/05 at 13:27:23, pubgirl wrote:
I hope everyone here is taking notes... Since OUCH (US) was the original OUCH, then yes it is up to them to award the charters. Even outlaw organisations such as the Hells Angels adhere to this basic principle. Do I believe that OUCH (UK) would adhere to this principle? Err no, my expectation (which you have just reinforced) is that they would just trample roughshod over the original OUCH's wishes. But OUCH could still officially withdraw the charter whether OUCH (UK) abided by that or not. This would pave the way for more capable people to found a new and officially sanctioned OUCH (UK). For avoidance of doubt I would not be among them. Politics, at all levels, is a breeding ground for sociopaths. And I can't be arsed. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by seasonalboomer on Nov 3rd, 2005, 1:51pm I'm starting to think there might be something to this article.... http://www.timesonline.co.uk/printFriendly/0,,1-525-1848835-525,00.html :) scott |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 3rd, 2005, 1:58pm It really is Brit bashing season here isn't it boomer? Aren't half of you here part British?? ;;D and aren't we supposed to be allies ;;D ;;D. by the way A.A. Gill is a coke snorting intellectual snob and a wanker but always interesting to read |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jeepgun on Nov 3rd, 2005, 2:07pm Wow.... That's a pretty scathing indictment... Sheesh... Maybe the author could use an anger management program? :o ;;D |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Mike_P on Nov 3rd, 2005, 2:19pm Please get your facts right Flash, we are not late with our accounts, we are not being fined £1000. As the person responsible for filing the accounts I feel I know better than you. The Inland Revenue would probably advise me. Where do you get your information from? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jimi on Nov 3rd, 2005, 2:29pm It has been interesting reading, but at this point I would like to ask you guys to take this back to your on board. You are getting into other issues that don't concern us. >:( |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 3rd, 2005, 2:46pm Seconded. Can I still talk smutty with Slammy on here though? It's been one of life's very worst days today and I need some oxytocin to lift my spirits. Wendy |
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Title: Re: I've just been banned from the OUCH UK board!! Post by BobG on Nov 3rd, 2005, 2:51pm Is it time to delete this thread yet? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Bob P on Nov 3rd, 2005, 2:51pm Mike_P, Flash's link: http://www.charity-commission.gov.uk/registeredcharities/showcharity.asp?chyno=1091919 (which had an extra space in it) is where he got the info. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by cathy on Nov 3rd, 2005, 2:54pm Jimi I think you meant own not on...just trying to be helpful..... ;;D |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Slammy on Nov 3rd, 2005, 3:04pm HEHEH... She said smutty! :-* Slammy 8) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jeepgun on Nov 3rd, 2005, 3:06pm Mmmmmmm... Smut... My favourite! [smiley=laugh.gif] |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Pinkfloyd on Nov 3rd, 2005, 3:10pm on 11/03/05 at 12:08:04, LadyElaine wrote:
Hi Elaine ;;D Yes, almost all people that are using shrooms or the seeds take them also between cycles to stop the next cycle from starting. It seems to work pretty well as a preventive also. If this weren't the case, most people wouldn't be using them between cycles. Most people do not like the "experience" any more than others "like" using Imitrex shots. I suppose we cluster owners aren't any different than the rest of the population so I "assume" a few people may do them recreationally more than is required for maintenence doses but...you can lead a horse to water. on 11/03/05 at 12:08:04, LadyElaine wrote:
You answer your question yourself, below.. on 11/03/05 at 12:08:04, LadyElaine wrote:
I don't want you to have to hurt like hell. on 11/03/05 at 12:08:04, LadyElaine wrote:
You use Imitrex Elaine. Do you fear drugs or do you fear illegal drugs? Not giving you a hard time, just care about you. I want to learn what it is that keeps people away from trying them. Part of "my job" as I see it is to remove those things that stop people from trying something I feel can help them. ie, clinical trials that help prove their safety and efficacy, legal issues, misconceptions about their safety....AND researching to make sure they ARE as safe as possible, and used as safely as possible. Of course, it is your decision and I respect that. You have made that decision for yourself and still have always accepted and supported people that have chosen to use them. Can't get much cooler than that. ;;D |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Pinkfloyd on Nov 3rd, 2005, 3:30pm on 11/03/05 at 03:44:44, ghost62 wrote:
I'd be very interested in hearing these accounts. In email if you'd rather, or here. You must be the only guy to know two people that died from just an overdose of psilocybin mushrooms in the last 4000 years. Very odd. Most stories like this end up going something like this... "Mr Jones ate what he thought were psilocybin mushrooms he had picked but they turned out to be poisenous shrooms he'd picked in a forest." or...additional drugs and/or alcohol or guns or....He ate some shrooms and his wife shot him for not taking out the garbage. Yours may be different and I am interested. Not to make light of it...would just like some facts. Knowing the LD50 of psilocybin mushrooms, I don't believe it is even physically possible to eat enough to die from. Now, this doesn't take into account allergies of interactions with other drugs or the person having other conditions, but in these cases, they aren't "overdoses" any more than a shot of imitrex that kills a heart patient is considered an overdose of imitrex. Bob (I do want the truth, the whole truth, and nothing but the truth....really. I am interested in the WHOLE story, including all the bad stuff. Its important) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by BikerBob on Nov 3rd, 2005, 3:38pm on 11/03/05 at 12:08:04, LadyElaine wrote:
Why does a pre-sterilized grain-based MycoBag turn you off? http://www.mycofactory.com/ BB |
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Title: Re: I've just been banned from the OUCH UK board!! Post by mrs mac on Nov 3rd, 2005, 3:44pm Quote:
i am from ouch uk and i have heard of them, i also have my own opinion about lots of things that have been mentioned in this thread!! first of all, i think it has gone way over the top!!!! secondly there has been too much bitching also, can no one here respect other's opinions, i have been on the clusterbusters site, and i find what they are doing really interesting, but hey, if it's not for you, then that isn't a crime is it?? the same thing applies to OUCH UK, if you don't like it and how it is run, then don't go on the site, you have other cluster headache sites you can go to, as in this one and OUCH US OR any of the other ones!!!! let's all learn to respect other's opinions and not get into personal slanging matches, as, as far as i am concerned, is not necessary and not clever!!! sandra xxx |
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Title: Re: I've just been banned from the OUCH UK board!! Post by kcopelin on Nov 3rd, 2005, 3:57pm This is amazing. On one level I see why y'all lost. On another level it bothers me that CH's can't get access to information through an organization that they PAY to be a member of. On yet another level: I cannot believe I just spent 1 hour of my precious PF time reading this thread. Note to self: call therapist. Time to start serious treatment. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Mike_P on Nov 3rd, 2005, 4:11pm Quote:
Thanks for that Bob, I have checked it, among other things that are incorrect are The Working Name, The Charity Correspondent, The Telephone Number, The Fax Number and Two of the Trustees. I will speak to them and get all these things changed. regards Mike Trustee OUCH UK |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 3rd, 2005, 4:39pm To address some of the points that have been raised :) I would rather this thread was taking place on OUCH (UK). But we cannot enter into this dispute there for 2 reasons: 1) Myself and others are banned from OUCH (UK) and could not participate. 2) OUCH (UK) will ban any member that starts this topic. Not only it is forbidden to discuss shrooms there, it is also forbidden to discuss why we cannot discuss shrooms there LMAO! And if you think that's crazy it gets better. OUCH (UK) used to have a notice up saying that you would get banned for discussing shrooms or the reasons that you couldn't discuss shrooms... but - and this is farcical - they removed the notice in case anyone reading it started researching the shrooms treatment. So anyone new that joins is unaware that they aren't permitted to discuss this, or that they aren't allowed to discuss the reasons why they aren't allowed to discuss this. Apparently (I got this from someone inside), some guy that had only recently joined posted a link to clusterbusters and said "Has anyone seen this?" and they deleted his post and banned him. Now isn't that just plain silly? Elaine - when I first started this treatment 13 1/2 years ago I used to have to dose every 3 months to remain PF. I began with hallucinogenic doses and gradually decreased these until I discovered that the shrooms were still effective in sub-hallucinogenic doses. I also discovered that the treatment work best as an episode preventative. Over time I was able to reduce the frequency of my dosing to 6 monthly, annually, and the last time I dosed was 2 1/2 years ago. Recently some clusterbusters started using RC seeds, which appear to be extremely effective and almost entirely free of hallucinogenic side effects. If my CH ever comes back and re-establishes itself then I wil try these seeds as I prefer not to experience any recreational side effects. MOB - I pulled your accounts from companies house. The 2002-2003 books weren't there but there was mention of an excemption (excemption in Companies House speak can mean something good or bad). The 2003-2004 books were filed in January 2005. The is not enough granualrity in the filed accounts to determine whether OUCH (UK) was fined for late filing the 2002-2003 accounts. In order to establish that it would be necessary to look at the books themselves. Aside from that the accounts appear to be in order. The Charities Commission do not appear to have any accounts filed by OUCH (UK). Ever. Wendy - earlier in this thread you referred to BobW / Pinkfloyd. It has since been brough to my attention that both BobW and myself were duped, and that this was little more than a damage limitation exercise. I have the utmost respect for people that have CH. I also have the utmost respect for people that support partners or close family members that have CH (like Margi to name but one). I also have the utmost respect for people that do not suffer from CH and are completely removed from it, but have chosen for whatever reason to help those of us that do. But I have an intense dislike for people that pertain to suffer from CH when they in fact do not. Get a life. BobW - I'll email you regards the above points. Dude that said 2 of his friends died after ODing on hallucinogenic mushrooms. I can find no record of any such deaths. Please provide full details. Their names, locations, approx dates of birth, and approx dates of death would be a good start. The researchers at Harvard may wish to research these unique cases. Also please never add me to your Christmas card list cos I don't want to go the same way! *** OUCH (UK) - I suspect that this thread is still alive because there are intelligent people waiting with baited breath the hear your case for not permitting free and open discussion on this form of alternative medicine. 1) Let's take RC seeds as a good example. RC seeds are totally legal. We can purchase RC seeds in the UK. RC seeds have little or no recreational value. RC seeds are virtually free of side effects. SO WHY ARE PEOPLE NOT PERMITTED TO DISCUSS RC SEEDS ON YOUR MB? 2) Were you fined for late filing of your 2002-2003 accounts? Yes or no will suffice? If yes how much? 3) To the best of my knowledge there are at least 8 members / ex-members of OUCH (UK) that have either skipped episodes or broken chronic cycles through use of Clusterbuster treatments are are currently leading PF or close to PF lives. a) How many people have OUCH (UK) assisted to skip and episode? b) How many chronic cycles has OUCH (UK) broken? So???????? We're all waiting??????? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Mike_P on Nov 3rd, 2005, 4:50pm Quote:
NO |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 3rd, 2005, 4:55pm Thank you for answering question 2). We shall hold you to that answer. You missed questions 1) and 3). Here they are again for anyone that is visually (or mentally) imparied: 1) Let's take RC seeds as a good example. RC seeds are totally legal. We can purchase RC seeds in the UK. RC seeds have little or no recreational value. RC seeds are virtually free of side effects. SO WHY ARE PEOPLE NOT PERMITTED TO DISCUSS RC SEEDS ON YOUR MB? 3) To the best of my knowledge there are at least 8 members / ex-members of OUCH (UK) that have either skipped episodes or broken chronic cycles through use of Clusterbuster treatments are are currently leading PF or close to PF lives. a) How many people have OUCH (UK) assisted to skip and episode? b) How many chronic cycles has OUCH (UK) broken? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 3rd, 2005, 4:57pm on 11/03/05 at 16:50:45, Mike_P wrote:
How about answering Flash's other questions Mike? Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 3rd, 2005, 5:04pm Another point I'd like to address. Someone criticised majic and Chuffy for not posting here very much apart from on this thread. That's likely to be because they are both PF. Why would anyone post here if they are PF? I've been coming here 7 years and only racked up 400 odd posts or whatever and 99% of those on clusterbusters related topics. Also you should be aware that majic is the CH sufferer that was interviewed and photograhed by The Guardian newspaper. He risked a lot in order for that article to go to print. They wouldn't go to print without someone that prepared to go public. We're owe this guy a debt of gratitude. He put his balls on the line. So please show him some respect. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 3rd, 2005, 5:06pm on 11/03/05 at 16:57:09, majic wrote:
Did you miss me? LOL ;;D |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 3rd, 2005, 5:13pm on 11/03/05 at 17:06:13, Flash wrote:
Well I was beginning to wonder when you'd turn up and join in ;) Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by LadyElaine on Nov 3rd, 2005, 5:13pm Hi Bob, Shroom, pot and so on leads many to addictions of more serious drugs. I have a family member that is additive to drugs. I have heard every excuse for him using them. From they help him sleep to they help him think and they help his back from hurting. You name it I have heard it. He can't keep a job cause he can't pass a drug test. His mind is burned up. A simple drug Pot (that does help cancer sufferers) lead him to more powerful drugs. I use to think pot was ok till I realized what it could lead to. I feel the same way about shrooms. If one person became a addict because I said shrooms was the answer to their pain, it would drive me nuts. Yes I did answer my question. Why take drugs when o2 helps. Thanks Bob I know you don't want people to hurt. Its my choose Drugs or no drugs. Imitrex helped hurt my heart, I am no longer able to take it. Because of that I no longer tell people about the drug. I been on this site a long time. I learn from my mistakes here, and I have made many. I use to praise imitrex it was my miracle drug, that's till I ended up with heart problems. Now I regret the day I tried it. I worry how many have hurt their hearts using it..I am not one to tell everyone that post that imitrex is bad. I post what happen to me in one post and let them judge for themselves. I could have already had heat problems imitrex just brought it out. There is a warning about that on the product. People can make up there own minds. I just tell what happen to me. I fear drugs more than clusters. I am 52 years old and like I said I learn from my mistakes. I fear all kinds of drugs. I feel from my research that a lot of drugs legal drugs given by a doctor helped destroy my fathers mind. Some of the drugs made him hurt all over. Some made his lungs weak. With many of them combined it helped kill him. I have very high cholesterol and the meds they gave me for that cause my bones to hurt, they caused me to forget things. I have done a lot of research and came to the conclusion that the best way to help myself is to be drug free. Better eating habits and exercise. I smoke and have found that is a hard drug to put down. I do still smoke but less than half of what I use to. I will keep trying to quiet until I do. I got a feeling that the fact I have cut way down has had a big and better effect on my clusters. Bob its like everyone here I post my opinion on what I feel. People can take it or leave it. This thread has has gone from bashing OUCH UK to all kind of things. I was just answering different post as my opinion. My biggest opinion on this whole thread and what started it is that if people have a problem with OUCH UK then the adult thing to do is email and talk to the BOD of OUCH UK. I don't think any thing gets accomplished the way its being done here. Bob you know as well as me that things get taken out of contents and the truth is never really found this way. There was a reason for this person to post and it was to start a fuss with OUCH UK and reenlist help in his fight. All I have seen for the last year on this board is people trying to kill OUCH US and OUCH UK now in negative post. If there was as many post backing all OUCH orgs. Then I would feel like people really cared and really wanted help. I don't live in the UK but I know it is a well run Org and I keep up with things. I also am not involved with OUCH US as far as having the time to volunteer and do things Like I use to but I still read the site and keep up. I think they know if they ever need my help they can ask. I would like to see more positive post and more people willing to help. Some people just walk in a door on the net and start looking for what's wrong with the site and posting their opinions without really finding out why things are as they are. They start challenging people right off. Lot of Good sites have been closed down because of this. What does any of this accomplish ? Now I am going back to my corner and won't be answering anything else on this thread, if you want to talk more about it please email me, but understand that my time is full of taking care of my grandson, taking care of a family and getting ready for Thanksgiving. I may not reply right off. I love you guys but can't understand how threads like this help anything. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 3rd, 2005, 5:20pm Let's have a vote ::) The Clusterbusters treatment RC (Rivea Corymbosa) seeds is totally legal in the UK. Is is legal to buy and sell RC seeds in the UK. No laws have been passed regarding RC seeds. RC seeds have at worst a negligible recreational vlaue. RC seeds are considered to be non-toxic by the standard definition. It has been established that there are absolutely no legal grounds for OUCH (UK) to disallow discussion of the Clusterbusters RC treatment on it's message board. Neither is there any valid reason for it's refusal to link to www.clusterbusters.com. Is it ethical for OUCH (UK), the organisation that pertains the be the official mouthpiece for CH sufferers in the UK, to forbid any mention of arguably the most promising alternative CH treatment at this time? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by mrs mac on Nov 3rd, 2005, 5:25pm really think it is about time this was dropped, you are all going round in circles and no one is getting any where!!! think you should all agree to disagree on this topic as i don't think it is one that will ever be fully resolved!!!!!! as i said before we are all entitled to our own opinions, and should respect each other for that!!!! sandra xxx |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 3rd, 2005, 5:30pm on 11/03/05 at 16:39:41, Flash wrote:
Flash I genuinely have absolutely no idea what you are referring to. Could you explain? It reads like a suggestion that I am claiming to have CH when I haven't, but I hope to God that isn't what you are suggesting. If you are suggesting that I have duped anyone in any way, I guarantee I haven't. I don't lie. I worked as hard as I could to get the psilocybin research link up on both UK boards and was gutted when it went again. I had no say in that and in fact have no say in any policy decisions at all as I am not a Trustee, despite what some seem to think, I didn't even know it was going to happen. I just do what I think is right in the best way I know to try and influence decisions that are made if I think they are important. Wendy |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 3rd, 2005, 5:34pm on 11/03/05 at 17:25:35, mrs mac wrote:
We will not permit this to be swept under the carpet any longer. We are all entitled to our own opinions but OUCH (UK) is not an individual. Furthermore because OUCH (UK) pertains to be the official mouthpiece for CH sufferers in the UK it is obliged to refrain from unwarranted censorship. Sandra - If DJ had not permitted me to dicuss this treatment back in 1998 there would be at least 200 less PF CH sufferers in the world. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Mike_P on Nov 3rd, 2005, 5:40pm I did not, and will not get into the right and wrongs of what should or shouldn’t be discussed on OUCH UK. I came onto this thread, after a request from one our members to answer inaccurate statements on a financial point. I must admit I haven’t actually bothered to read the thread other than the last two pages. It looks both long and boring and of course I guess also contains the usual vitriol towards OUCH UK that comes up every so often from (ex)members who haven’t got their way. I have answered the question of late filing, I hope satisfactorily. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 3rd, 2005, 5:42pm on 11/03/05 at 17:30:53, pubgirl wrote:
There is an old Sicilian saying: If you want to know who is behind something then follow the money. Meaning: Results are more revealing than rhetoric. The result of Wendy's past interventions has been to silence this debate. Since then OUCH (UK) has removed every reference to the Clusterbuster treatment, including the quaintly Basil Fawltyesque "Don't mention the shroom!" notice, the proposed Harvard research, and even the public message board has been removed. From this we learn that keeping quiet results in things going backward. So what does this tell us about Wendy? Word from within OUCH (UK) is that Wendy hasn't done jack shit to help the Clusterbuster cause. That her instead her objective was to silence us. Every concession we gained from OUCH (UK) was won on flame threads like this. So game on! Now will someone respone to the following questions: 1) Let's take RC seeds as a good example. RC seeds are totally legal. We can purchase RC seeds in the UK. RC seeds have little or no recreational value. RC seeds are virtually free of side effects. SO WHY ARE PEOPLE NOT PERMITTED TO DISCUSS RC SEEDS ON YOUR MB? 3) To the best of my knowledge there are at least 8 members / ex-members of OUCH (UK) that have either skipped episodes or broken chronic cycles through use of Clusterbuster treatments are are currently leading PF or close to PF lives. a) How many people have OUCH (UK) assisted to skip and episode? b) How many chronic cycles has OUCH (UK) broken? *** AND: The Clusterbusters treatment RC (Rivea Corymbosa) seeds is totally legal in the UK. Is is legal to buy and sell RC seeds in the UK. No laws have been passed regarding RC seeds. RC seeds have at worst a negligible recreational vlaue. RC seeds are considered to be non-toxic by the standard definition. It has been established that there are absolutely no legal grounds for OUCH (UK) to disallow discussion of the Clusterbusters RC treatment on it's message board. Neither is there any valid reason for it's refusal to link to www.clusterbusters.com. Is it ethical for OUCH (UK), the organisation that pertains the be the official mouthpiece for CH sufferers in the UK, to forbid any mention of arguably the most promising alternative CH treatment at this time? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by majic on Nov 3rd, 2005, 5:51pm on 11/03/05 at 17:40:39, Mike_P wrote:
I don't understand why you still refuse to discuss this. What are you so scared of? Had you bothered to read the thread you might have noticed a number of posts by people who are very concerned that your attitude is deliberately causing people to suffer. Why do want to do this? Is your personal morality interfering with treating sick people? Richard |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 3rd, 2005, 6:01pm on 11/03/05 at 17:40:39, Mike_P wrote:
OK in that case you can get off with just answering this question: 3) To the best of my knowledge there are at least 8 members / ex-members of OUCH (UK) that have either skipped episodes or broken chronic cycles through use of Clusterbuster treatments are are currently leading PF or close to PF lives. a) How many people have OUCH (UK) assisted to skip and episode? b) How many chronic cycles has OUCH (UK) broken? on 11/03/05 at 17:40:39, Mike_P wrote:
OK I'll sumarise it for you with another simple question that does not contain any vitriol: The Clusterbusters treatment RC (Rivea Corymbosa) seeds is totally legal in the UK. Is is legal to buy and sell RC seeds in the UK. No laws have been passed regarding RC seeds. RC seeds have at worst a negligible recreational vlaue. RC seeds are considered to be non-toxic by the standard definition. It has been established that there are absolutely no legal grounds for OUCH (UK) to disallow discussion of the Clusterbusters RC treatment on it's message board. Neither is there any valid reason for it's refusal to link to www.clusterbusters.com. Is it ethical for OUCH (UK), the organisation that pertains the be the official mouthpiece for CH sufferers in the UK, to forbid any mention of arguably the most promising alternative CH treatment at this time? Now you answer me! |
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Title: Re: I've just been banned from the OUCH UK board!! Post by rextangle on Nov 3rd, 2005, 6:02pm Well, Craig (Flash) has done nothing but bring up some very valid points and raised some of the best questions I've ever read. But nobody has answered any of them. Fine. Avoid the questions, but this issue is driving me up the wall. I don't push the Clusterbuster treatment on anyone. It has done wonders for me. Everybody can pick whatever they want to deal with this condition. I don't go around bashing MEDS. I hate them personally, but it has worked for others. Let it be. If cocaine was a form of treatment, I would NEVER do it. But would I bash people who would chose that route? NO! I just find it unethical to ban any discussions about what could potentially provide relief to suffererers. How many times I wanted to go and bash PREDNISONE knowing what it has done to some of us... but I don't. Ask Dave Emond how he feels about it. Enough said. This is stupid, and I'm done with this! Goodbye, Rex |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 3rd, 2005, 6:09pm Elaine, The BOD of OUCH (UK) ignore my emails. They refused to discuss the matter any further as of 2 years ago. I imagine the others have a similar issue with them. This is the only place that we can (attempt) to bring about an open debate. Hallucinogenics are known for their counter addiction property. Magic mushrooms have been used to defeat addications to heroin and cocaine. The McLean Hospital deals with drug addiction. They have been selected to run the proposed trials because they already have experience in the clinical uses of hallucinogenics. They've been using them to help treat drug addicts. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Bob P on Nov 3rd, 2005, 6:14pm Quote:
Don? Is that you? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 3rd, 2005, 6:14pm OUCH (UK), Would you please have a spokesperson answer the following question: The Clusterbusters treatment RC (Rivea Corymbosa) seeds is totally legal in the UK. Is is legal to buy and sell RC seeds in the UK. No laws have been passed regarding RC seeds. RC seeds have at worst a negligible recreational vlaue. RC seeds are considered to be non-toxic by the standard definition. It has been established that there are absolutely no legal grounds for OUCH (UK) to disallow discussion of the Clusterbusters RC treatment on it's message board. Neither is there any valid reason for it's refusal to link to www.clusterbusters.com. Why does OUCH (UK), the organisation that pertains the be the official mouthpiece for CH sufferers in the UK, forbid any mention of arguably the most promising alternative CH treatment at this time? Thank You! |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jonny on Nov 3rd, 2005, 6:23pm on 11/03/05 at 18:09:39, Flash wrote:
And as King here, there will always be place here for PF talk no matter what the treatment!!! Unless Ali is involved ;;D |
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Title: Re: I've just been banned from the OUCH UK board!! Post by BikerBob on Nov 3rd, 2005, 6:28pm on 11/03/05 at 18:14:30, Flash wrote:
http://www.ethnogarden.com/cart/index.pl/catid_77/proid_156 http://www.iamshaman.com/eshop/10Expand.asp?ProductUID=1849&ProductCode=RVC-25 BB ;) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by maffumatt on Nov 3rd, 2005, 6:38pm I am on 7th week being PF. My cycle started in mid Feb, ended in October. Two weeks after the first dose a week after the second, I can live my life again. I sleep every night, work every day, enjoy my kids. Just thought I would put that out there.........seemed important ........to me anyway. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 3rd, 2005, 6:44pm on 11/03/05 at 17:42:51, Flash wrote:
If this is all true then why does Pink Floyd say on Page 3 of this interminable thread: "I feel the need to make this public posting. If it can cause you problems pubgirl, send me an email and I'll remove my post asap. I'll stay out of all the side issues (for now) but it is important for everyone that cares, to know that Wendy has been one of our biggest supporters and has gone above and beyond duty, fighting for Clusterbusters at OUCH UK. (At least as long as Clusterbusters has existed (2002)). Much of it behind the scenes which is the only place it IS debated over there. (as this thread attests) Flash , you are slandering me and you refuse to be specific about what it is am supposed to have done to silence you. This is grossly unfair. I CAN'T answer your questions about why shrooms aren't discussed on OUCH UK as I think it should be. I even resigned as an Officer, a substantial part of the reason for this was how I felt about the research link being removed when, as Bob/Pink knows, I really gave it everything I could think of behind the scenes to get it included, which it was, but sadly only for a few months. I know you don't give a shit whether you upset me or not, but hopefully people on here who bother reading this will know that Bob/Pink speaks the truth, and you don't in this matter. Wendy |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Opus on Nov 3rd, 2005, 6:53pm on 11/03/05 at 16:39:41, Flash wrote:
Bashing Wendy (pubgirl) for having a personal opinion, and the claiming that in fact she does not have CH is pretty low. Even if she did influence OUCH UK, so what? You want to do the same thing, just in the other direction. If all she has done is state her opinion and then have it accepted by the leaders of OUCH UK you are then saying that she has the same rights as you as long as she agrees with you. This sums up living in a free country, "I disapprove of what you say, but I will defend to the death your right to say it." ATTRIBUTION: Voltaire [François Marie Arouet] (1694–1778 ) on 11/03/05 at 18:14:30, Flash wrote:
How many times are you going to post this? This is not OUCH UK, so I assume you have meant it for someone here, so then PM it to them and later check you out box, if there is a box to the right saying recall, that means it wasn't opened. on 11/03/05 at 18:14:27, Bob P wrote:
LOL Bob you even used the quotes in Don's way to hide who said it. Opus/Paul |
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Title: Re: I've just been banned from the OUCH UK board!! Post by BikerBob on Nov 3rd, 2005, 7:06pm on 11/03/05 at 18:14:27, Bob P wrote:
on 11/03/05 at 18:23:11, Jonny wrote:
Now that Don is gone, Bob P and Jonny SUCK. BB ;;D |
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Title: Re: I've just been banned from the OUCH UK board!! Post by nani on Nov 3rd, 2005, 7:23pm on 11/03/05 at 18:38:02, maffumatt wrote:
I think that's important to all of us who suffer. I'm just thrilled for you, honey... thrilled!!! It works pretty durned good for me, too. :D |
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Title: Re: I've just been banned from the OUCH UK board!! Post by SteCo on Nov 3rd, 2005, 7:28pm on 11/02/05 at 20:48:06, Jonny wrote:
This really bothered me all flippin day. There....I fixed it ;;D The clusterbuster regime is nothing short of amazing!! SteCo |
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Title: Re: I've just been banned from the OUCH UK board!! Post by ben_uk on Nov 3rd, 2005, 7:37pm on 11/03/05 at 17:40:39, Mike_P wrote:
Hi ya Mike, Welcome to the thread : ) I know you said that you did not want to get involved with this thread but old “limp wrist from above” dragged you in already. You should have read back a bit further as you were mentioned on page 4. Old “limp wrist from above” said this to me:- “I think you had better talk to Mike Pollock privately regarding a meeting on the 25th Oct before you start digging a hole for yourself” Firstly, Please can you tell me what hole he might be referring to? I haven’t got a clue what he is on about and he seems to dodge questions or answer with vindictive threats like this from another thread:- “Gee Ben and we have been such good friends for soooo long”. I’m concerned for him is he under a lot of stress? Or taking too much medication? Does he think, “not to be my friend any more” might bother me in some way? Secondly, doesn’t he know that I knew about your meeting on the 25th long before it happened? And that I already know he was told there – “how impressive my mask is” And that “trials are being taken up” And (although not in writing yet) it has been endorsed? clustermasx is discussed on all of the OUCH and CH web sites except for CULT UK….. why? When I approached CULT UK with excellent info on O2 equipment and masks, I was blanked…. Why? I returned to CULT UK with my extensive O2 qualifications…. They ignored me…. Why? I again approached CULT UK with my very excellent O2 equipment, (£500 worth of gleaming surgical grade stainless steel). They weren’t interested…. Why? I informed them that (with help, support and permission from the medical industry and qualified profession) I was carrying out trials and tests to improve the “problems” we CHers have with O2…. They could care less….. Why? If CULT UK wants CHers to have better O2 equipment….What are they actually doing about it? clustermasx is helping a lot of sufferers. Has CULT UK ever mentioned this at all? You would think that CULT UK would be “interested” in “someone/anyone”(let alone one of their very own paid up members) that was carrying out tests and trials to improve O2 therapy for CHers. They have never even bothered to contact clustermasx. ….why? The many supporters of clustermasx have helped it become what it is today. What has CULT UK ever done to support clustermasx? Do you think electronically changing the word clustermasx on CULT UK and red carding anyone who mentions it is helping clustermasx? Or helping sufferers to find better relief? Don’t let them hide behind the smokescreen of the legalities of “other” therapies. clustermasx is not illegal and no one has ever died from a clustermasx overdose, yet it seems CULT UK are trying their best to stop their devotees from hearing about it… why? Also, why might old “limp wrist from above” want me to contact you “privately” over this….. Does he want me to keep secrets? :o |
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Title: Re: I've just been banned from the OUCH UK board!! Post by marty on Nov 3rd, 2005, 8:57pm In two days we have 9 pages of heated discussions regarding OUCH UK's rules on their board... During the revolutionary war, the British said about America, and the other British colonies, that the purpose was to make the world England - well, it did not work, did it. Maybe because there was, and still is, a lot of arguments as to what is and what is not - in this case, if you want to discuss illegal drugs, don't do it on the OUCH-UK site - I guess that some just can not accept that... We now have British and Scottish members of the United Kingdom involved in discussing the use of mind-altering drugs that are deemed illegal in most parts of the world - the US included (I know, I arrested a some of 'em). Pretty soon we will most likely see the Irish and the delightful people from Wales getting involved. Maybe this is a covert operation where the United Kingdom is making yet another attempt of "taking" the United States back - but wait... did they not "forget" their ladders at the Chesapeake / Benedict landing when they last tried in 1812?? - they may still be laying there.. or could it be part of the plan [smiley=huh.gif] [smiley=huh.gif] Since I now "pissed" some people off - why not continue your discussion in the UK? Oh, I forgot, you can't do that on the OUCH-UK board and to start your own board is, according to what I read, plain stupid or something to that effect.. Well, shoot... have at it then, or if you rather, GIT-R-DONE ;;D Marty Modified as to spelling |
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Title: Re: I've just been banned from the OUCH UK board!! Post by maffumatt on Nov 3rd, 2005, 9:05pm Top left corner of this screen does read "CH.COM worldwide clusterheadache support group", doesn't it? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jonny on Nov 3rd, 2005, 9:17pm on 11/03/05 at 20:57:40, marty wrote:
Fear not Marty, I am still King of this joint.....just letting this bitch of a thread wear it self out ;) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by vietvet2tours on Nov 3rd, 2005, 10:15pm http://i10.photobucket.com/albums/a150/vietvet2tours/fav2mb_th.gif Potter |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 4th, 2005, 5:14am Nobody is being forced to read this thread. The crappy complaints about this thread are making it much longer than it needs to be. So STFU and let us get on with it. Thank You :) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 4th, 2005, 6:41am Link to the Guardian article which feature majic. http://www.guardian.co.uk/uk_news/story/0,,1540601,00.html Unfortunately this is not the full article. Although Majic does feature in this article, his big interview appeared inside a separate box section that has not been transcribed onto the internet. If anyone has a scan of the original article then could they please upload it somewhere like photobucket.com then post the image here. Thank You |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Bob P on Nov 4th, 2005, 9:46am Quote:
I thought this looked familiar. I really missed ya Flash! |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 4th, 2005, 9:54am Wrong again Flash and still deluding yourself that your guerilla tactics actually work. Every concession gained from OUCH UK was gained by Pink Floyd/Bob's reasonable approach, careful and polite communications and enormous generosity. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by ben_uk on Nov 4th, 2005, 10:03am on 11/04/05 at 09:54:33, pubgirl wrote:
So who is deluded? :o |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Chuffy on Nov 4th, 2005, 10:04am on 11/04/05 at 06:41:57, Flash wrote:
Thanks for the link to the article, interesting reading. This bit that made me realise, ah, this is where the blank stares/attitude from OUCH(UK) is emanating from, if the Maharishi of CH says this then it must be true: Peter Goadsby, professor of neurology at the Institute of Neurology, University College London, and the world's leading expert on cluster headaches, is sceptical about the mushroom therapy. He argues that the relief reported by some patients may be a placebo effect or owing to natural remission. But he does believe the cases warrant a proper clinical study, particularly as ergotomine - which contains lysergic acid, a precursor of LSD - has been used to treat migraines for years. "It's possible that mushrooms have some useful effect but it's far from proven," Dr Goadsby says. "Cluster headaches are such a devastating problem that people will turn to anything that seems to work." Anyway no direct answers to your very straight forward questions yet I see Flash. www.site full of PF idiots.com |
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Title: Re: I've just been banned from the OUCH UK board!! Post by vig on Nov 4th, 2005, 10:07am all trash talkin' aside: Could we have a summary of what OuCH UK will/will not allow on their website and why? The alternatives (legal and illegal) have shown lots of promise. There would have to be some REALLY good reasons not to allow discussion of them and I'd love to know what they are. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Chuffy on Nov 4th, 2005, 10:10am on 11/04/05 at 10:07:26, vig wrote:
So would we Vig, so would we. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Bob P on Nov 4th, 2005, 10:11am Quote:
Just curious what in this statement you think is not true? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by karma on Nov 4th, 2005, 10:16am Quote:
Placebo affect? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 4th, 2005, 10:19am on 11/04/05 at 10:03:44, ben_uk wrote:
I cannot believe you just wrote that Ben! It was nothing to do with your outburst. It was due to several well respected OUCH UK members and a Trustee, nothing whatever to do with your rudeness yesterday. I thought you would be happy but I can see that I was wrong. The people concerned don't want or need your thanks as they are just happy about the outcome but it is sad that you see it the way you do. Your mask is wonderful, you are a genius, but you are SO wrong here Wend |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Chuffy on Nov 4th, 2005, 10:20am on 11/04/05 at 10:11:46, Bob P wrote:
Thankyou, exactly, PLACEBO effect. The minute a medical professional uses that word the public switch off. Some placebo effect stopping a Chronic after 15 years. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Chuffy on Nov 4th, 2005, 10:27am on 11/04/05 at 10:19:28, pubgirl wrote:
Ah, Miss Disgusted UK >:( Tis a strange coincidence then don't you think, you can't blame him for seeing it like that. Anyway, how about someone from OUCH(UK) replying to Flash's very straightforward questions. You all have the evasion skills of a top flight politician. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Margi on Nov 4th, 2005, 10:36am Oh. My. GOD. People!! TEN flippin pages?? :o Enough already! OK, so OUCH UK has their reasons for their rules just as all our websites. So be it. They ARE a professional organization and HAVE helped a lot of cluster sufferers. They stand firm behind their guidelines. Good for them. Let them be. As I said before, obviously folks in the UK are still finding the info about shrooms. Why continue to bitch and moan about OUCH UK's decision? Instead, why not take the suggestions raised repeatedly here and start a clusterbusters UK? As Bob said, OUCH is not an internationally registered charter. Each country is bound by their own legislation and using the OUCH name is more of a handshake agreement. There's no need to "strip" OUCH UK of anything. >:( Here at OUCH Canada, we are comprised of 5 Directors and we are each personally liable if our charity is associated with any illegal operation. Hear me on this: the narcs WILL come to our doors (me, Doug, Bonnie, Tracy and Mac) if we start pushing anything illegal. So we, too, have to be very careful about how we present the psilocybin story to our sufferers. We're loaded to the nines with disclaimers at our website but we've collectively agreed to allow discussion as long as it remains for information purposes only. We celebrate the shroom success stories we see on our boards. MY POINT, however, is that this was a well thought out and quite laborious decision that we reached at OUCH Canada. It wasn't taken lightly at all by any one of the five of us. We understand the consequences we could face and we continue to take every precaution to ensure safety for all. The folks at OUCH UK took another route and...newsflash....that is ENTIRELY their perogative to do that. RESPECT THEIR POSITION and let them be. If you need to do some shroom talkin, come here or to OUCH Canada or start a European clusterbuster site. Quit piddling all over yourselves and show the world that YOU can be professional too. Flash, I know you're a busy guy but you really are the pioneer here. Couldn't you steer some such committee to get this going? You did a wonderful job of presenting the idea to us years ago. You can do it again, I have every faith in your capability. You know the old saying, 'when life gives you lemons....' C'mon, man - I know you've got it in you. Please stop the backbiting here, folks. It only makes the cause look bad. edited to add: I've seen the phrase that OUCH UK is the voice for UK sufferers repeatedly in this thread. The way I see that is, yes, currently they are. So what's wrong with adding another voice for the UK sufferers (by starting your own website)? Isn't that what this is all about is helping the cluster headache sufferers? At the end of the day isn't that what we all really want? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by thomas on Nov 4th, 2005, 10:39am There you go making sense again, Margi. Will you please cut that out. ;) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Margi on Nov 4th, 2005, 10:41am sorry, Thomas. LOL I'll just be going back to my corner now. ;) :-* |
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Title: Re: I've just been banned from the OUCH UK board!! Post by ghost62 on Nov 4th, 2005, 10:47am [smiley=laugh.gif] [smiley=laugh.gif]This is fun though its kinda like the battle for britian ... someone pass me some popcorn. ;;D And Margi again making sense this far into it is like pi55in on a forest fire, hot but fun to watch. [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] |
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Title: Re: I've just been banned from the OUCH UK board!! Post by vig on Nov 4th, 2005, 10:47am just the use of the word skeptical... It sometimes implies disbelief and I don't think that's what he means, especially since he continues and pushes for a study. It IS effective for many people, without the debilitating side effects. He's a doctor with a license that could be pulled if he misspeaks, so I assume he's just in CYA mode. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Roxy on Nov 4th, 2005, 10:58am It seems pretty simple to me. If you don't like OUCH UK....don't join. Find another ch site which suites your preferences......I think ya'll have done that in coming here. It's not like the internet is limiting in location.....it's called the world wide web for a reason. You can join and participate in any group. There are many more sites that allow open discussion than not. Use one of those. I just don't see what the problem is. It is their site, their rules....just go somewhere else. Clusterbusters rules. Roxy |
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Title: Re: I've just been banned from the OUCH UK board!! Post by karma on Nov 4th, 2005, 11:08am Margi, Anybody that comes here has the advantage of becoming aware of EVERYTHING, good, bad or useless that is available. Sadly thats not the case to thousands of sufferers that only know the UK site. It was mentiond in this thread that any search for cluster info in the U.K. takes you to the OUCH UK site. For many that will be the bible until, if they are lucky, they find out what else works. Its easy for you to tell people to back off becuase you already have the information and can choose( as does everyone else here) What about the thousands that cannot choose? Don't they have a right to know? I count myself lucky that I first found this site and not any other. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Kevin_M on Nov 4th, 2005, 11:21am on 11/04/05 at 10:47:58, vig wrote:
Concerning Dr. G's comments, I'd have to agree Vig. Scientific method usually functions with concept, observation, reason, and experiment. The concept has been accepted, the observation has been done informally but now is being structured with McLean involved. Being that the experimenting is not written up yet, results of study or whatever, Dr. G would not be able to substantiate any pro statements with a published scientific journal reference, I am assuming, and that is what CB's is trying to change. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Bob P on Nov 4th, 2005, 11:23am Quote:
Almost every medical trial involves some placebo effect. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Ueli on Nov 4th, 2005, 11:26am Margi wrote Quote:
Yes, any organization, country, bowling club has it's rules and laws. Butt they are not cast in iron. In any community it should be allowed to discuss the rules, and change them if a majority desires so. Only in a dictatorship the subjects have no right to question the rules. I thought Byelorussia was the last dictatorship in the western world, but it looks like there is another one within the UK, one that even has secret rules. I wish this thread goes on for another thousand pages, or until the OUCH-UK trustees fess up, here or somewhere else, what actually their rules are, why they are like that and why they cannot be discussed and even less changed. I thought a trustee is somebody you can trust. Looks like my English is far from perfect. [smiley=smokin.gif] |
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Title: Re: I've just been banned from the OUCH UK board!! Post by vig on Nov 4th, 2005, 11:33am let's give it one more try: "Could we have a summary of what OuCH UK will/will not allow on their website and why?" The seeds aren't illegal. I'm I hearing correctly that discussion of them is not allowed? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Margi on Nov 4th, 2005, 11:34am on 11/04/05 at 11:08:09, karma wrote:
Karma, respectfully, all the more reason to offer another choice to the UK sufferers by starting another site. Or, at the very least, the existing Clusterbusters site getting themselves onto some UK search engines. What's happening here is this has become a vendetta against OUCH UK and has stopped being an initiative to help cluster headache sufferers. THAT's just wrong. Kinda like throwing the baby out with the bathwater, if you ask me. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Redd715 on Nov 4th, 2005, 11:40am on 11/04/05 at 11:23:20, Bob P wrote:
Placebo control groups is more accurate, but yes Bob this is part of the process of determining when a difference between to groups, (or double blind study) is significant and greater than chance. Here is a link to an easy to understand explanation of statistical significance when dealing with psychological experiments, but the emperical method is a cross over to all forms of scientific research. http://www.mentalhealth.com/dis-rs/rs-effect_size.html |
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Title: Re: I've just been banned from the OUCH UK board!! Post by ghost62 on Nov 4th, 2005, 11:46am Well some things just dont go as planned A lady goes to her priest one day and tells him, "Father, I have a problem. I have two female parrots, but they only know how to say one thing." What do they say?" the priest inquired. They say, "Hi, we're hookers! Do you want to have some fun?" "That's obscene!" the priest exclaimed; then he thought for a moment. "You know," he said, "I may have a solution to your problem. I have two male talking parrots, which I have taught to pray and read the Bible. "Bring your two parrots over to my house, and we'll put them in the cage with Frank and Jacob. My parrots can teach your parrots to pray and worship, and your parrots are sure to stop saying that phrase in no time." "Thank you," the woman responded, "this may very well be the solution." The next day, she brought her female parrots to the priest's house. As he ushered her in, she saw that his two male parrots were inside their cage, holding rosary beads and praying. Impressed, she walked over and placed her parrots in wit h them. After a few minutes, the female parrots cried out in unison: "Hi, we're hookers! Do you want to have some fun?" There was stunned silence. Shocked, one male parrot looked over at the other male parrot and exclaimed, "Put the beads away, Frank, our prayers have been answered!" ;;D [smiley=laugh.gif] |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Drk^Angel on Nov 4th, 2005, 11:47am Okay... Considering that OUCH-UK ain't goin' anywheres for at least a while, and they aren't exactly droolin' over the chance to change their position... Why not STFU and stop whining? Or... Start your own damn charity/support group/helpline. Maybe ya can start OUCH-EU? You can support all the goals that you approve of from OUCH-UK, but add your own goals such as allowing links to ClusterBusters and talkin' about psilocybin/psilocin treatments 24/7. "OUCH-UK is the voice of UK sufferers" Well, maybe there needs to be another voice, because the voice you hear obviously ain't sayin' what you want it to say. Go forth, spend your own time, money, life creating the pure, good CH organization that will fulfill all your wants and desires for the rest of time. Go... Hurry up... Get started... Don't wanna be late now... Go on... You can do it... We all have faith in you... Buh bye now... Have fun! Cyaz! PFDAN....................................... Drk^Angel |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Margi on Nov 4th, 2005, 11:52am Game, set, match to DrkAngel. Well said, Kenn. ;) can we PLEASE stop now? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by karma on Nov 4th, 2005, 11:59am Piss poor comeback, Bob P If this is the definition of placebo effect. No sugar pill would take away my pain or yours until it was good and ready. Quote:
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Title: Re: I've just been banned from the OUCH UK board!! Post by thomas on Nov 4th, 2005, 12:12pm on 11/04/05 at 11:59:56, karma wrote:
I disagree whole heartedly, it is my belief that the power of the human subconcious mind is far greater than we are able to comprehend. This is after all a neurological disorder and it stands to reason that if a person's brain is causing this problem, one could "trick" said brain into shutting off the pain. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Big Dan on Nov 4th, 2005, 12:25pm INTERMISSION... http://www.microkitten.com/images/c3ru/Brazilian-thong.jpg ... *elavator music* -Big Dan |
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Title: Re: I've just been banned from the OUCH UK board!! Post by ghost62 on Nov 4th, 2005, 12:33pm potty break http://www.kdlltd.com/vig/mensroom2.jpg |
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Title: Re: I've just been banned from the OUCH UK board!! Post by floridian on Nov 4th, 2005, 12:35pm on 11/04/05 at 11:46:57, ghost62 wrote:
I laughed when I read that, then I realized the problem with that joke. A priest would not name his parrots Jacob and Frank. Frank is not a biblical name - it would be Jacob and Joseph, or Mathew and Mark, or some other set of names that are mentioned in the scriptures. Not only is that joke NOT funny on close examination, but I question your motives for posting it here. Obviously, it is an attempt to undermine true humor - YOU don't want people to laugh. Ever again. So bugger off, or tell a real joke whose essence has not been corrupted in the retelling, or rewritten by an agent of the dark side. http://home.no.net/holodoc/ordinary1.jpg |
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Title: Re: I've just been banned from the OUCH UK board!! Post by cootie on Nov 4th, 2005, 12:37pm Wow Big Dan you really went on one hell of a diet......you look hot !!! I still miss the pink shirt Pam ;;D Thomas I agree with that.......I have forgot to take a dose for 'whatever' (meegrain or sumthin like that or back flareup issues) and thought I felt it creeping back when it was onea them nagging pains I caught early. And then I'd think to myself.......I jus took my meds to KEEP it ramped down and got busy and felt it start to come back but semi-disolve away. Not totally maybe but tolerable and forgettable if keepin busy. Mind over matter is real.......(but I can't speak for CH pain at high kips or dieing matters) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by ghost62 on Nov 4th, 2005, 12:43pm OHHH Im so torn up by you lack of humor. ;;D Let me guess didnt get laid like the parrots did? [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] If you must know there are several of us here trying to break the pace of this BS ... and you are attacking me because ???? Oh well go for it im easy and cheap too! [smiley=laugh.gif] [smiley=laugh.gif] |
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Title: Re: I've just been banned from the OUCH UK board!! Post by floridian on Nov 4th, 2005, 12:48pm on 11/04/05 at 12:43:31, ghost62 wrote:
Because I thought that was the purpose of this thread - for everyone to attack each other. ;) Sorry. Quote:
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Title: Re: I've just been banned from the OUCH UK board!! Post by ghost62 on Nov 4th, 2005, 12:50pm Sorry Flo wasnt paying attention ... ok shoot i cant think of anything now give me some time Ill be back ;;D |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pf_again on Nov 4th, 2005, 1:01pm Hello everyone, I have registered here as a result of reading this thread. I would like to briefly explain my related experiences. Please excuse my anonimity but I do not want to be banned from the OUCH-UK website. I was diagnosed late last year with chronic CH (after several years undiagnosed) and my neurologist introduced me to the OUCH website. The people there were very, very friendly and spoke with an authority reassuring to me in my agony. I spent months on the site reading about every medication available. Or so I thought. After a long time, and with next to no success using a variety of traditional meds, I eventually found my treatment of choice after happening accross the aforementioned article in the Guardian newspaper. Using SLA seeds I am now almost completely pf - jolly good show as we in blighty might shout. The point is that the Trustees of OUCH UK seem prepared to leave new sufferers in ignorance (and pain) for reasons that they will not explain. I think this is a disgrace. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by vig on Nov 4th, 2005, 1:06pm on 11/04/05 at 13:01:28, pf_again wrote:
Hello... ...and we are giving them every opportunity here to explain themselves. A good rule can stand up to scrutiny. A bad one can't Now's your CHance: tic, toc, tic, toc.......... |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Sandy_C on Nov 4th, 2005, 1:21pm Margi Thank you. l Yours is the most sensible post I've seen in this entire thread, and I think we're up to 11 pages and counting. I hope everyone, on both sides of the pond, take a real good read on what you said. Sandy - moving on to page 11 now. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by ghost62 on Nov 4th, 2005, 1:27pm on 11/04/05 at 13:06:48, vig wrote:
not sure how sorry Better? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by vig on Nov 4th, 2005, 1:31pm on 11/04/05 at 13:27:56, ghost62 wrote:
funny picture, by the way, Comic relief is always appreciated.... ;;D http://www.kdlltd.com/vig/mensroom2.jpg |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Sandy_C on Nov 4th, 2005, 1:32pm And posting again - back to back I see. DrkAngel wins. I've always heard that you can better make changes from the inside, but apparently not with OUCH UK. So, Clusterbusters, pur your money where your mouth is, start another European website. Maybe, just maybe you will be able to help some Europeans beat this affliction. And now, goodbye Sandy |
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Title: Re: I've just been banned from the OUCH UK board!! Post by ghost62 on Nov 4th, 2005, 1:37pm Thanks vig ;) ;;D |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Margi on Nov 4th, 2005, 1:40pm on 11/04/05 at 13:32:54, Sandy_C wrote:
C'mon, Sandy, let's you and me go get a coffee. Maybe this will be over by the time we get back. Well, we can hope, anyway, right? ;) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by fubar on Nov 4th, 2005, 2:23pm Fucking hell... Woke up in a good mood today... stumbled down to the puter to see what's what, and saw this 11 page monster. Wow. What a trip. (pun intended) Since y'all want my opinion on this (you know you do) OUCH (UK) has every right to make a web site any way they want to make it, within the law. I'm sure they feel like they're doing good work and many people support them with donations, so it can't be all bad. Right? Fuckineh right! However, I would personally like know how they justify NOT discussing (or allowing discussion of) legitimate alternative treatments that exist and are legal to discuss. That horrifies me. From the looks of it, there is no justification apart from their own self-imposed restrictions. Well, I like it here and will stay here. I feel sorry for those in the UK that might stumble on OUCH UK and use it as their solitary source of information. They are cheated. The tactics of instant bans and censorship (even URL transformation) seem downright Orwellian. Sorry folks, I just call 'em like I see 'em, and this practice does not seem justified at all. In fact, it's not a whole lot different than the 'birth counselling' centers here that pretend that abortion doesn't even exist as a choice. OUCH UK seems like it is pushing a far-right agenda under the disguise of fear of imaginary repercussions from law enforcement. I have seen, over the years now, the question asked so many times. I know I will never see an answer because the answer is repugnant and they know it. They refuse to say the only reason they have taken this stance is because of PERSONAL feelings on the matter. It has NOTHING to do with law. The 'law' argument is utter bullshit and they know it. So, every time it is asked, they ban, attack, misdirect and otherwise squash the uprising until it is swept under the carpet yet again. This is bullshit. So here is what I'm going to do about it. nada. carry on. -Fu |
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Title: Re: I've just been banned from the OUCH UK board!! Post by vig on Nov 4th, 2005, 2:35pm tic, toc, tic, toc.......... come on OuCH UK, this is your CHance to explain yourself...... (by not answering, you leave us with the impression that, for personal reasons, you ARE ok with people not knowing about these treatments. Is that ok with you?) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Margi on Nov 4th, 2005, 3:02pm well, now the UK Happy now? This certainly isn't going to help get the shroomers' case heard by OUCH UK. Everybody loses now. [smiley=nono.gif] edited twice for grammar. ::) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by ben_uk on Nov 4th, 2005, 3:26pm on 11/04/05 at 10:19:28, pubgirl wrote:
So what you are saying is that CULT UK has kept clustermasx secret from their devotees for 2 years and the fact that - 12 hours after I speak publicly about this (and its the first time that I have) – the Cabal change their draconian measures. And it’s a coincidence?????? :o |
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Title: Re: I've just been banned from the OUCH UK board!! Post by vig on Nov 4th, 2005, 3:29pm on 11/04/05 at 15:02:14, Margi wrote:
I sure hope nobody here had anything to do with that. I have no reason to believe it.... I aren't happy.... |
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Title: Re: I've just been banned from the OUCH UK board!! Post by mrs mac on Nov 4th, 2005, 3:35pm i ain't happy either guys what ever gripe you have with OUCH UK, there are a lot of people in the uk who find the board helpful, who have not been involved in this dispute there are now a lot of unhappy innocent people wondering what has happened to their board, and to some of them their lifeline!!! i sure hope that no one here has any thing to do with it, as i think that is just going completely over the score!!!!! chuffy i do hope that you are pleased with your self >:( |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Margi on Nov 4th, 2005, 3:37pm I have no idea the origin of the breakdown either, Paul. One thing I am sure of though, this thread sure hasn't helped and you can bet the webmaster(s) aren't all that happy right now either. It's a damn shame if you ask me. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by mrs mac on Nov 4th, 2005, 3:42pm hi margi, totally agree with you this thread has been totally blown out of proportion, and the amount of personal attacks against people is just completely out of order i am hoping that the ouch uk board crashing is just a technical blip that can be sorted quickly, i would hate to think that any one here would be so malicious to do anything like that!!! please for everyones sake can we just end this thread now, before any more damage is done :-[ sandra xxx |
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Title: Re: I've just been banned from the OUCH UK board!! Post by vig on Nov 4th, 2005, 4:29pm on 11/04/05 at 15:42:46, mrs mac wrote:
I'm hoping it was an innocent teCHnical glitCH... But I also think this is a great opportunity for someone to answer the simple questions. actually now there's another question that has to be answered since a 'hack' was suggested.... (I'm not trying to be an instigator, I'm trying to help get to the bottom of the whole dispute.) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 4th, 2005, 4:33pm on 11/04/05 at 15:26:07, ben_uk wrote:
FOLKS I WOULD IM THIS RATHER THAN POSTING IT BUT BEN ISN'T TALKING TO ME no Ben, to be scrupulously fair (which I don't think people ever are to me) I think the largest part of this wasn't your outburst, but it may have catalysed the final push. As far as I know, which bluntly is more than most people here, there had been a serious Member mutiny brewing about your mask for quite a while. The Helpline volunteers who are not Trustees but do have a little influence were very unhappy about having to be secretive about helping people get the mask. Tom and Helen and I and Mike and some others were posting about it. The truth is that the mutiny was reaching a peak but may have been based on a misunderstanding as when Helen pushed it yesterday and Tom and several others on a previous occasion, and I last night we found that we were able to openly talk about the mask and help people get it as long as it is not seen as a piece of official OUCH kit, which it won't be until PG has tested it out. (yeh, yeh, I know but if he was your patron you wouldn't want to piss him off either) Also FOR THE RECORD AGAIN!!! If we had a board, which we don't any more as some bastard has killed it WE CAN DISCUSS SEEDS AND HAVE DONE SO WITHOUT IT BEING DELETED OR THE PERSON BEING EMAILED. Hope this may set the record a bit straighter Wendy |
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Title: Re: I've just been banned from the OUCH UK board!! Post by fubar on Nov 4th, 2005, 4:51pm It's amazing to me that the question remains unanswered. The site magically goes down in order to prove that we are all just a bunch of troublemakers. Wow. That was truly a masterful stroke. Now *quick* shut this thread down before anybody is forced to actually admit that there is no logical reason for OUCH UK to avoid this question, except to maybe admit that the whole issue has nothing to do with law. My personal suspicion is that OUCH UK must be in bed with pharmaceuticals. What other explanation would suffice? We have no competing explanation from OUCH UK, so what are we to think. Let's examine the obvious here: 1) There is no law preventing discussion of this in the UK 2) There is no threat from any authority, anywhere, against OUCH UK if they were to allow this type of discussion with the appropriate disclaimers and oversight. 3) OUCH UK has shown *extreme* prejudice in terminating any and all discussion of this topic on their site, and is also trying to kill this discussion out their practices. What gives here? If I were a cynic, I'd begin to think that the whole agenda is driven by pharmaceuticals who want patients that buy expensive meds. What other explanation is there? To behave as if these alternatives do not exist, and in fact punish those who attempt to discuss alternative treatments... this is truly the worst kind of misdirected 'thoughtfulness' in the world. They don't call this suicide headache for nothing, and people in our condition deserve to know what might work for them, even if it skirts the boudaries of lawfullness. It's a matter of life-or-death for some, and not at least providing a link or approved statement or *SOMETHING* is downright criminal in the humanity book of laws. OK, now someone from the UK OUCH site please post the obligitory non-answer where you call me names for saying terrible things about your site and completely avoid the very simple question that we would all like answered. tic fucking toc |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 4th, 2005, 5:07pm Shawn No-one from OUCH took the board down and I think the suggestion is a bit sick. There is only one person with the capability is MOB and he wasn't around and even if he was, he wouldn't deprive sufferers of their board to prove any kind of point. Anyone who destroys a cluster sufferers resource, however incomplete or imperfect it is because it doesn't say what they want it to say is beyond my understanding. Beyond that I can't give any of the answers everyone is looking for, and when I can and do answer, no-one believes me anyway so there isn't much point W |
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Title: Re: I've just been banned from the OUCH UK board!! Post by LeLimey on Nov 4th, 2005, 5:18pm on 11/04/05 at 13:01:28, pf_again wrote:
Hmmm..you want to retain membership of OUCH UK whom you say are a disgrace... WHY??? I'm not sure you are a member but IF you are.. you'll know my views won't you? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 4th, 2005, 5:19pm added Shawn and others The pharmaceutical company connection is in my view spurious and slanderous. I think the problem is that the OUCH UK Board of Trustees HAVE answered on here before and therefore it remains that either: You don't agree with their reasons OR Those reasons are also spurious, OR You don't accept that they have the right to make such decisions unilaterally. I have sympathy with all the above, but have done everything I know of to change things and can't think of any more things to do. If the only solution is to destroy the OUCH Uk Members Board, then that is very, very sad for the people who depend on it. Wendy |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jonny on Nov 4th, 2005, 5:20pm on 11/04/05 at 17:07:24, pubgirl wrote:
I will back this.....No way would MOB do this, Ive been talking to this dude for five years and theres no way he would intentionally shut that board down! I dont know what the hell is going on, but I do know MOB and thats not his way of dealing with shit....its mine....LOL ;;D |
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Title: Re: I've just been banned from the OUCH UK board!! Post by vig on Nov 4th, 2005, 5:21pm on 11/04/05 at 17:07:24, pubgirl wrote:
I would believe you... come on, tell me ;;D |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 4th, 2005, 5:22pm Thanks Jonny, I KNOW MOB wouldn't do this, and am grateful you know it too. If Fu knew MOB he wouldn't suggest it either W |
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Title: Re: I've just been banned from the OUCH UK board!! Post by LeLimey on Nov 4th, 2005, 5:25pm This isn't the first time the board has been hacked this year. MOB has worked ceasingly on each occasion to get it back up and running. If my opinion carries any weight I would also like to state quite categorically that I do not believe MOB would do anything like that ever. Helen |
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Title: Re: I've just been banned from the OUCH UK board!! Post by mrs mac on Nov 4th, 2005, 5:34pm well said helen i would also like to say that MOB wouldn't do that either whoever has done this (if anyone??) is denying innocent people of a board that they turn to for help and advice, but hey i've already said that haven't i!!!!! ;) sandra xxxxxxxx |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Kateeast on Nov 4th, 2005, 5:39pm Its up and running now! |
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Title: Re: I've just been banned from the OUCH UK board!! Post by fubar on Nov 4th, 2005, 5:46pm Wendy, You and I know each other as reasonable people. I have even enjoyed your hospitality at your house and I like you a lot. I guess it's time to wonder about you now. Calling me sick for speculating on what I consider to be revolting actions... I just gotta wonder. Why are you so ready to defend such bullshit? You of all people. You seem unable to comprehend the problem here, and we agree that you are not able to answer the question. The problem is not that we disagree with the reasons previously given, they haven't given any real explanation that I know of. To date, the only explanation offered has been an empty excuse having some vague issue with it not being lawful to discuss it. Well, we know that isn't true. That's not a matter of opinion, it's a matter of fact. It is legal. So, we asked for an explanation. They are not obligated to read the question, let alone answer it. However, I am perfectly within my rights to speculate. especially since they refuse to discuss it like adults. This is the most reprehensible behavior I have ever seen from a 'help' site. I wonder how many months of suffering could have been avoided by those who might explore this treatment but haven't because of the denial-of-information campaign that OUCH UK is on. Nobody here ever suggested destroying the UK board, and jumping to the conclusion that it was hacked is as incendiary as suggesting it was done by your own folks. I thought you might catch the simularity, but apparantly not. My point is it is a stupid thing to blame this thread for your site going down, just as stupid as taking it down to prove a point. If admitting that the policy is unrelated to law would destry the site, then I guess that IS what we are trying to find out. If so, I'm sure you would see a better site emerge. If the problem is you would lose PG in the process, then I think that needs to be considered and discussed. Of course, that's not allowed either. You don't start with the singular truth that no PG = NO OUCH UK. The status quo is complete bullshit. Sufferers absolutely should be permitted to discuss LEGALLY all of their options. There are allowed to do so under British law, and OUCH UK is really no better than the 'pregnancy counselling centers' here in the states that pretend there is no such thing as abortion. In fact, those places are BETTER because at least they admit why they have an agenda. You guys pretend to be THE source for information when in fact you are the source for SOME information. If you AT LEAST told people that when they joined... but no, they ban people for even stumbling into an alternative treatment and blindly asking the question on your site. I say bullshit. I am saddened that you have decided to attack me for posing a very real and serious question. And of course I thank you for posting the obligatory non-answer that I expected. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by BikerBob on Nov 4th, 2005, 6:00pm Ahhhh, the suspense.... Why did the OUCH UK board go down? Was it a psycho-electronic blipfart bounced off of a satellite by a malicious clusterbuster who's been banned for mentioning the word psilocybin? BB ;;D |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jonny on Nov 4th, 2005, 6:03pm on 11/04/05 at 18:00:38, BikerBob wrote:
No, it was your breath ;;D |
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Title: Re: I've just been banned from the OUCH UK board!! Post by LeLimey on Nov 4th, 2005, 6:03pm on 11/04/05 at 18:00:38, BikerBob wrote:
If you believe that I have a bridge you might like?! :P |
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Title: Re: I've just been banned from the OUCH UK board!! Post by rextangle on Nov 4th, 2005, 6:08pm on 11/04/05 at 18:00:38, BikerBob wrote:
Don't be silly Bob, it was this dude... http://upload.wikimedia.org/wikipedia/en/thumb/d/d9/Ac.thequeen.jpg/182px-Ac.thequeen.jpg |
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Title: Re: I've just been banned from the OUCH UK board!! Post by rextangle on Nov 4th, 2005, 6:13pm Well, maybe a little musical break to cheer all of your arses up!!! LADIES AND GENTLEMEN!... THE SEX PISTOLS!!!! [smiley=headbanger.gif] God save the Queen the fascist regime, they made you a moron a potential H-bomb. God save the Queen she ain't no human being. There is no future in England's dreaming Don't be told what you want Don't be told what you need. There's no future there's no future there's no future for you God save the Queen we mean it man we love our queen God saves God save the Queen 'cos tourists are money and our figurehead is not what she seems Oh God save history God save your mad parade Oh Lord God have mercy all crimes are paid. When there's no future how can there be sin we're the flowers in the dustbin we're the poison in your human machine we're the future you're future God save the Queen we mean it man we love our queen God saves God save the Queen we mean it man there is no future in England's dreaming No future no future for you no fufure for me |
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Title: Re: I've just been banned from the OUCH UK board!! Post by BikerBob on Nov 4th, 2005, 6:57pm Good one Rex... Check this out... Prince Charles and Camilla are going to be in the San Francisco Bay Area for the next few days to focus on...... organic farming. http://sfgate.com/cgi-bin/article.cgi?file=/c/a/2005/11/04/MNGIOFJ3PB1.DTL I'm going to try to meet him at the Point Reyes Farmers' Market tomorrow, show him a grain-based MycoBag, and explain it to him. BB |
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Title: Re: I've just been banned from the OUCH UK board!! Post by rextangle on Nov 4th, 2005, 7:08pm on 11/04/05 at 18:57:03, BikerBob wrote:
LOL! A MycoBag or a cowpile would do too? [smiley=huh.gif] ;)Rex |
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Title: Re: I've just been banned from the OUCH UK board!! Post by fubar on Nov 4th, 2005, 7:48pm As expected, there is no answer to the real question here. There will be no answer and the thread will die and things will go on as always at OUCH UK. Fine. I want to say one last thing on it and I will attempt to shut up and move on. Here’s the thing. 50 years ago, before Rosa Parks and the civil rights movement, we had a whole country silently going along with reprehensible policies. Sure, a lot of people didn’t like it, but they put up with it and nobody made a fuss for the most part. I ask you, did their silence make the policies of segregation any more acceptable? Was it OK because nobody complained loudly enough? Of course, it doesn’t matter at all how many people said it was OK… it was not and will never be. To all of the Brits here defending the policy… I have not yet heard one single rational justification for treating the subjects as taboo. You manage to post here and say ‘stop whining about our site’ and you wage personal war on those who question it, but not once have you even defended the policy. Of course you don’t have to. Even when you claim you have defended it in the past (you haven’t), you never say what your defense was. That fact alone makes it obvious that the policy is indefensible. That, or that your justifications would expose another agenda that has nothing to do with helping CH sufferers. Now, before you go and twist that all around, I’m not saying OUCH UK doesn’t help people. I’m saying that a policy of denial-of-information as drastic as yours is not at all in concert with a true effort to help sufferers of CH. I’m sure OUCH UK has helped countless people, that’s not the issue. The issue is that there is mounting evidence that alternative treatments that are legal to discuss are disallowed there, and that means it is likely that there are CH sufferers that will miss out on this information due to your policies. That should be criminal. My point is that the policy is bad, you know that it is. Yet, you defend the site instead of attempting to at least make people aware of alternative treatments. There is no defense of the policy except to say that people can get that info elsewhere. That’s an empty argument as well as OUCH UK does have quite a strong influence on the information that people in the UK are connected to, period. Some people, on the edge of suicide perhaps, need to know what the possible options are so they don’t do something even more stupid than taking an illicit drug (like pulling a trigger). I was right there, I know. Alternative treatments saved my life and that’s no exaggeration. It’s just like the 50’s when everybody ignored the problem. It’s wrong and you know it. I'll go sit in the back of the bus now, since I'm not from the UK and I really should just mind my own business. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 4th, 2005, 7:53pm on 11/04/05 at 17:46:58, fubar wrote:
Fu I haven't defended OUCH on the shroom stance for a very, very long time now as I don't agree with it as you well know. I only argue against some of the racier speculations about WHY (like yours ;;D), and against anything involving damage or hurt, including personal attacks on me. r.e. the non answer I have already told you why, I don't have an answer to all your questions as I don't see why the link we used to have to the Harvard research which contained a link to Clusterbusters was ever removed. I was very happy when it went up and was as surprised as everyone else when it went. I still have no idea why it did. W |
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Title: Re: I've just been banned from the OUCH UK board!! Post by LeLimey on Nov 4th, 2005, 7:58pm on 11/04/05 at 19:48:01, fubar wrote:
Now THAT is wrong. Thank you for that perspective Fu, it's made alot of sense to me. The only other thing I will say is people are allowed to talk about seeds at ouch uk. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 4th, 2005, 10:01pm Wow! Thank You Fubar! Your postings were excellent. Someone PM'd me with the following links: http://www.ouch-us.org/newsletters/09-2005/09-05-06.htm http://www.ouch-us.org/newsletters/09-2005/09-05-07.htm http://www.ouch-us.org/newsletters/09-2005/09-05-08.htm This is how OUCH (US) treats the subject of Clusterbusters treatments. They devote 3 whole pages of their newsletter to it. Now that's what I call support! It is news to me that people at OUCH (UK) are permitted to talk about the seeds... but I wouldn't know because I am excluded. If this is truely the case then it answers my question. Pretty much everything that applies to the shrooms applies to the seeds. The 2 are virtually interchangeable. If my CH ever re-establishes itself then I intend to try the seeds as they appear to have less in the way of recreational side effects which I do not enjoy (triggers anxiety attacks). I know there was a thread about HBW seeds on OUCH (UK) some time ago - does this thread still exist? If people on OUCH (UK) are indeed permitted to talk about the seeds then this raises another important point. All the important and necessary information regarding the seeds is held at www.clusterbusters.com. I would recommend that anyone considering trying the seeds accesses that site, for their own health, safety, and mental wellbeing, before proceeding with this course of action. If OUCH (UK) are indeed permitting mention and even open discussion on HBW and RC (why did nobody raise this earlier - I must have asked that Goddamn question 20x) then it would be irresponsible not to link to CB. This is not some sort of ploy, these are powerful substances and if someone gets the wrong advice, say some confusion arises between the dose for RC seeds and the dose for HBW seeds then there is a very real risk of poisoning. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by BikerBob on Nov 4th, 2005, 10:02pm on 11/04/05 at 19:58:40, LeLimey wrote:
Why are they not allowed to talk about psilocybin? BB |
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Title: Re: I've just been banned from the OUCH UK board!! Post by LeLimey on Nov 4th, 2005, 10:16pm BB My understanding of it is that psilocybin is not permitted to be discussed as Shrooms are an illegal substance in the UK. They are a class a drug (the government cracking an egg with a hammer) If I'm wrong I apologise. Flash, There was a huge thread on HBW on the old message board. We have a brand new one as of about two weeks ago and as yet we can't access the archives. I can't say that the thread does or doesn't still exist but I'd be surprised if it was gone as it was quite in depth and was never halted in any way. As to people not getting the full info on everthing Flash, I can assure you anyone interested gets to know about clusterbusters.com one way or another. We have some very knowledgable people who post and are very thorough and painstaking in the information they present. Its not ideal, its what we've got and its what we have to work with, for, through. I have a question for you though Flash because I think if anyone can answer it you can.. what if any do you think the chances of getting shrooms reclassified are (in the UK) and what would need to be done to facilitate this? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 4th, 2005, 11:26pm on 11/04/05 at 22:16:49, LeLimey wrote:
I think it's going to be difficult to change anything now that the law is actually passed. Personally I do not care if mushrooms remain illegal. It doesn't stop them growing. And it wouldn't be such a bad thing if i got lifted and charged becuase at least it would bring our plight out in the open. But what I would like to see is dispensation for CH sufferers. All this would require is a register of CH sufferers. Those on the register would be immune to prosecution for the following: 1) Picking, preserving, possessing, and ingesting shrooms. 2) Growing their own shrooms. 3) Sending / providing FOC supplies of shrooms to other people on the register. 4) Importing shrooms from Holland, Eire, and anywhere else they are legal. That's all it would take to alleive CH for people prepared to take shrooms. Having said that all this would be completely unnessessary for anyone that was able to get relief from seeds. Seeds are legal and shrooms aren't so I now view seeds as the first line of defence. Shrooms are only a backup. *** The main thing here is that people are genuinely free to discuss the seeds on OUCH (UK). Now what about unbanning me so that I can participate too? Also - surely it wouldn't hurt for OUCH (UK) to reinstate some information on what is happening at McLean Hospital / Harvard University. See I'm really very easily pleased! I know for a fact that PG doesn't have a huge problem with the shroom thing. I've spoken with him in the past, and also exchanged some emails. He appears genuinely interested in what is going on. I also fully understand why he quoted what he did to The Guardian... wouldn't be very scientific or professional to come out in favour of hallucinogenics before any trials were conducted - would it? MArk from The Guardian did tell me that PG was much more forthcoming off the record. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by rextangle on Nov 4th, 2005, 11:27pm http://i19.photobucket.com/albums/b157/rextangle/homeuk.jpg |
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Title: Re: I've just been banned from the OUCH UK board!! Post by cootie on Nov 5th, 2005, 12:22am This may of already been mentiond in this thread but with my snail slug slow dialup it'd take me days to catch up with it.....but wasn't there talk about a synthetic being created for CH by labs and legal. Not sure of the time frame when it was to happen or if it did or the progress but seems to me I heard about it at one of the conventions ?? It'd be a mild dose that worked and people be able to tolerate it well and work and stuff. Or go out whatever.........legal beagle Pam |
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Title: The beast has skin Post by rumplestiltskin on Nov 5th, 2005, 1:20am Just posted at the OUCHUS site What would you do if the beast had skin? If you could see him...write to him...touch him? Anyone that witholds Clusterpain relief info from a Clusterhead FOR ANY FUCKING REASON is ....in fact...a conspiritor with the Beast....and therefore becomes the beast... The beast has skin. He is alive in England. The old timers (those who actually have felt CH pain) here who defend OUCHUK's censorship disgust and amaze me...how dare you defend his conspiritors...and therefore the beast himself? We have lived thru trolls, animal boy(who caused this new site to be created), frank..rip, ALI, ...and we have all known THE PAIN. This is a very different moment. The beast has skin. Do not defend his right to cause one soul a CH. I would like to see a formal OUCH US protest of the OUCHUK's refusal to simply link or mention alternative methods to stop CH PAIN The beast has skin...you can call him...write him...touch him den |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Pinkfloyd on Nov 5th, 2005, 2:10am on 11/04/05 at 22:16:49, LeLimey wrote:
I was very involved with the coalition and solicitors (lawyers over here) that were/are trying to bring this matter before the courts in the UK. I gave a notarized statement that was to be read before the courts. I was prepared to fly to London. I even practiced using the term "bloody hell" in my spare time. I figured that if I was taken into custody, someone would have bailed me out ;-) You DO have bail over there don't you :o After much work, the solicitors came to the conclusion that it would not be possible at this time. Things are sort of on hold while they circle the wagons, although there are a few other movements afoot also. We're doing what we can from over here to make it as safe as possible and offer up as much information as possible. Bobw |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 5th, 2005, 2:27am on 11/04/05 at 22:01:49, Flash wrote:
I posted on here that we can talk about seeds on the UK board Craig so it shouldn't be news. Helen is right, there was an extensive thread, started by Peter M but it is unavailable at the moment for the reasons Helen gave. I am being told that the sole reason seed can be discussed and shrooms can't is because seeds aren't illegal in the UK. My suspicion is that it is also because most of the Board if Trustees don't know what they are ;;D When we lost the Research thread, Bob/Pink took the time out to email me and suggest that the seeds was a possible option for discussion and why. This was helpful Wendy |
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Title: Re: I've just been banned from the OUCH UK board!! Post by ben_uk on Nov 5th, 2005, 6:11am on 11/04/05 at 16:33:46, pubgirl wrote:
Wendy, Please can I ask you to address my queries- First you said this – Reply # 230 - “It was NOTHING to do with your outburst” and that “I” was “SO wrong” and then you said – Reply # 275 - “it may have catalysed the final push”. Which is it? Who was SO wrong? and also please consider this – Where/how and when did you first hear about clustermasx – or another way - For how long did the Cabal keep it secret from you? Re, - “FOLKS I WOULD IM THIS RATHER THAN POSTING IT BUT BEN ISN'T TALKING TO ME” – We have spoken on the phone and I have sent you privet messages and what you are really saying here is that I haven’t replied to your (IM) attempts to pacify me. Please can I direct you back to these quotes – Flash – Reply # 187 – “It has since been brough to my attention that both BobW and myself were duped”,…….Reply # 200 – “The result of Wendy's past interventions has been to silence this debate”.. “So what does this tell us about Wendy? Word from within OUCH (UK) is that Wendy hasn't done jack shit to help the Clusterbuster cause. That her instead her objective was to silence us.” You say this - Reply -# 200 – “The Helpline volunteers…. having to be secretive about helping people get the mask.. Please do not IM me on this as I prefer to speak publicly on this and not be part of any secrets. When you say “Tom did this” or “Helen did that” – Thank you for keeping everyone else up to date about what your fellow board members are doing. My friend Tom lives quite close and we speak/meet often. I think it is fantastic that he has been given the opportunity to show his abilities as the new Oxygen Officer. He has asked me to help him with training and info. Which I am delighted to be already doing. I also speak to and meet Helen quite often and I am delighted that her enthusiasm and energies are finally/shortly to being appreciated by the hierarchy. The “several others” you speak of are likely to be – Kate, who I and on occasion my wife Jane not only have spoken daily by phone and Email but also visited her and her family at her home 3 times in the last month and I am delighted to call her, her mother and her son and daughter – my friends. Also perhaps Peter, who I speak to by Email almost daily – speak on the phone about once a week and meet perhaps once every month or so. And maybe Carl who’s almost daily banter by Email and phone is a constant highlight to my life. Dare I mention Emily,(ex Oxygen officer) Who did a great job and only asked me to help her with queries on Oxygen therapy when CULT UK didn’t have a clue……….. This is getting boring, I am sure you are getting the picture – That in fact YOU are out of the loop. But you needn’t be : ) Click on to MSN, It’s where UK CHers are able to post messages with their own personal opinions and not get red carded : ) It “sort of” defeats the object of having a CULT UK message board, but unfortunately If a devotee thinks out side the box there, they are excommunicated. Or, why not come along to one of our many meetings – Helen is down this way next week, Carl is coming to stay at my house in a couple of weeks, Kate,Peter,Tom, (and all of the other “usual suspects”) are all making arrangements (even Zany). Thank for mentioning this – “until PG has tested it out”. Peter and I are friends, I’ve met members of his family, we share mutual friends, He has been kept abreast of clustermasx from day 1,we meet often, we are working together on Oxygen therapy, I presented to his full team the last time I met up at QS.(you should have heard him laugh when I told him about CULT UK’s draconian measures on the word clustermax : ) I am so sorry to hear that - as you say there was a “serious Member mutiny brewing” and that “mutiny was reaching a peak”….. It sounds like CULT UK are imploding! Looking forward to seeing you at one of our meetings soon. :o |
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Title: Re: I've just been banned from the OUCH UK board!! Post by zanychef on Nov 5th, 2005, 6:20am [quote author=ben_uk link=board=general;num=1130976836;start=300#306 date=11/05/05 at 06:11:27] to one of our many meetings – Helen is down this way next week, Carl is coming to stay at my house in a couple of weeks, Kate,Peter,Tom, (and all of the other “usual suspects”) are all making arrangements (even Zany). [quote] EVEN ZANY?????? makes me sound like a social recluse lol;) [smiley=laugh.gif] [smiley=laugh.gif] |
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Title: Re: I've just been banned from the OUCH UK board!! Post by redtaz on Nov 5th, 2005, 6:27am Yes i am a member of OUCH(uk). No i am not here to cause trouble. Can anyone answer me a question? Posted by: rumplestiltskin Posted on: Today at 7:20am Quote:
What is the purpouse of OUCH, not just the uk site but all the OUCH sites? I was under the impression that they are here to help sufferers and supporters get information and support on helping them to get the correct diagnosis. IMHO, isnt that what it is all about!!!!!!!!!!!!!!!! After joining OUCH(uk) and getting lots & lots of help and advice on the current liscensed medications in the UK, I didnt just think ok there i go not going to look for anything else ime just gona sit here and hope that these drugs work. I carried on looking and asking questions of other members of OUCH(uk) and was told of this place by lelimey, who told me that i would find other treatments that people are trying on this board and might like to have a look for myself, which i did. Yes i like the site but to be honest it is a little bit fast for me and was, for me to much info for me to take in. BUT i still come over here to have a read and have got a lot of info and helpfull ideas. DAPE |
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Title: Re: The beast has skin Post by fubar on Nov 5th, 2005, 6:29am on 11/05/05 at 01:20:16, rumplestiltskin wrote:
I second the motion. Serioiusly, it's a travesty. Silence is complicity. Modified to add: DAPE, Here's the problem. For every board member who actually communicates with other board members, there are probably 10-20 members who simply read and never go through with posting or asking questions or IM'ing others on the board. Their information is limited to what they are exposed to in the open. I can't help but believe there are OUCH UK readers who don't know the whole story, and that is just plain wrong. To answer your question, the purpose of OUCH is to help CH suffererers as much as possible, NOT to help CH sufferers as much as you deem worthy of discussion. I could maybe understand limiting the discussion, but that's not what we are talking about. We are talking about a total ban and punitive action on those who even come close to violating the ban. That's completely different. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by karma on Nov 5th, 2005, 8:08am http://www.clusterbusters.com/ Seems only appropriate Sheesh whats so hard about that? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 5th, 2005, 9:36am Wendy, Please point out where on this thread you posted about being able to discuss seeds on the UK forum. I don't doubt you posted this, I just can't find it. Bear in mind that someone will check the code to make sure you didn't edit it in later LOL half-:) You also hinted at my next question which is: Are the same trustees (or whatever) of OUCH UK, that banned all mushroom related stuff, aware that seeds are the 'son of psilocybin'? Because if this is likely to just be a temporary interlude before seed discussion is also banned then that's not good. You may recall me posting on the, since disabled and deleted, OUCH UK public board some months ago that they should consider allowing discussion of seeds. Here is an easy way out for them. Publically (well within the members board) advise them of both this situation, and be sure and explain exactly what the HBW and RC seeds are, and that they contain LSA which is a sister to LSD. If they continue to permit postings on the seeds then we've made some progress. AND since people are already posting about seeds, we'll never know if it was entirely their own decision, or due to pressure from here. Like I said - an easy and face saving way out. The other thing they might consider doing is linking directly to clusterbusters seeds section. Important note: THE WHOLE INTERNET IS LINKED TOGETHER. IN THE SAME WAY THAT ALL HUMANS ARE RELATED. OUCH UK AND CLUSTERBUSTERS ARE ALREADY LINKED IN THAT IF YOU TYPE "CLUSTER HEADACHE" INTO GOOGLE THEN YOU FIND THEM SEPARATED BY ONLY A FEW PAGES OF RESULTS. The point I'm making is that there's no real harm in them linking in directly to the seeds section. For starters Clusterbuster is not doing anything illegal. In the same way that The Guardian and New Scientist did not get shut down for publishin their articles. The UK may be a nanny state but it does stop short of being a police state. By linking directly to the seeds section then certain control freaks will be making their feelings quite clear without denying anyone access to useful information. And finally they need to open up their membership a little. Nobody that has been banned or pushed out is a troll. We all suffer from CH. Banning me is silly, the only grip I have with them is this one! Permit postings on the seeds and link to CB and I'm happy as Larry. This is just business - nothing personal. Which is why, after 2 years, I still sound like a broken record. Once we have resolved this, at least to some extent, then the matter need never be raised again. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 5th, 2005, 9:57am Can you bear with me Craig, have about 6 million questions from Ben first. It was in one of the replies to him on here that I said that we could talk about seeds on OUCH UK. I admit I should have mentioned it before as I have known for ages that seed discussions were OK as Peter's thread on OUCH was never commented on or deleted and it was quite a few months ago, but some of these posts here are so long you forget what you should be responding to and saying. Wendy |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 5th, 2005, 10:00am Ben I am, as requested posting, not IM’ing, so suggest others move on if it is not of personal interest. I never claimed it was me who was the instrument of being permitted to discuss the mask on MB. I can only say as I see and based on what I know. Don’t knock me for honestly admitting that your outburst catalysed something when at the time I posted first I didn’t think it had, but subsequently it did! The attack on “CULT UK” didn’t make the BOT change their minds, it catalysed one of them to actually inform us that they had done so at their last meeting. This is frankly symptomatic of a total failure of communication, but you, me, Helen, Tom etc etc etc DIDN’T KNOW, or if they did, what were we all getting so upset about? You say I was “out of the loop” but it appears we all were. As a result of the discussion on here, I found out from Mike that we could. Maybe I’m too naïve and trusting but I believe that this is the truth. You perhaps may be less trusting than me and see it as a restrospective climb down by OUCH caused by your attack, but that is how I see it. All I then did was to post as fast as I possibly could on the MB (check if you don’t believe me) that it was OK to talk about the mask and email Helen to get her to reinstate herself as she had deleted her profile out of conscience. The outcome is good but surely we should be now looking for the next step and I am ready and willing to assist as long as , for me, it doesn’t involve damage to OUCH or hurt to individuals. We each have to do things which fit our own values and we have to have the right not only to do that but to take the consequences of those decisions and values. The consequence of my “behind the scenes approach” which I am trying to accept and get a thicker skin about is that people will doubt my actions and motives as they aren’t public sometimes. Craig and his supporters’ approach doesn’t fit my values so I forever reserve the right to disagree with it as they ever reserve their right to do it, so we will always clash as I support his mission, but not his methods. Sobeit. The people whose opinion I value know what the truth is and know that I have always tried to do what I can to help , butting up against and challenging decisions, but without damaging too much. I am sad that I had counted you as one of those who knew I was doing my best to help and did not doubt the motives. I hope that at some point in the future, when the distance gives perspective, you will feel like that again. I am really sorry that you found the “secretive” comment about the Helpliners offensive, but would you have preferred we hadn’t done that Ben? We would all prefer we hadn’t had to but for those who share my “internal” approach we saw that as the best option. At least that way people had access to the mask. I have never sought to silence ANYONE, EVER about your mask , and have only ever silenced one person (Richard actually) by blocking- not deleting, ONE thread, once, on our newcomers board about shrooms as I have a personal belief that we SHOULD have free access to the information but that it shouldn’t be the first thing someone sees when they arrive at the Support Board as that could be majorly scary if you have just been diagnosed and are in the first stages of research and understanding what can help you. An illegal drug is a possible treatment option but probably too much to consider in those early days. Like ch.com I think it should be a resource that is there for people to look at and consider for themselves, knowing all the risks, but that the first thing they see when they arrive is info about the condition itself and where people can get help and advice and some quickly and easily available relief from the pain. see nxt post |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 5th, 2005, 10:03am r.e. the PG thing, I did not intend to imply I had a hotline to him that you don’t, I was merely stating how I had heard the OUCH BOT position, for right or wrong, and I, like you (as you well know) think it is wrong. As far as I understand it, he is fine about us talking about the mask but can’t endorse it yet, and until he does, the BOT won’t either. We agree on everything that matters Ben, so can we just focus on what can be done from now on the mask and shroom issues. I have, as always, reservations about HOW things are done, but I really struggle to see how the end objective isn’t the same for everyone. If we can’t discuss some things on OUCH, then we have to do it here if people will indulge us further and just read other threads instead. I remain in your debt as your mask has changed my CH life for the better (that condition I don’t have of course Craig) I would love to join the next meet Ben as I do as often as I can, but I have some stuff going on here that makes it hard to commit at the moment until I know some dates. Wendy P.S. r.e. where I first heard about the mask? Ironically on the OUCH MB. Val or Mike I seem to remember, then Em sent me one and I was a devotee. P.P.S. Can MOB, Mike and I have a small amount of credit for having the cojones to post at all. We stick our heads over the parapet and get shot. Others don't come here for their own understandable reasons but at least we do! |
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Title: Re: The beast has skin Post by fubar on Nov 5th, 2005, 10:39am on 11/05/05 at 06:29:26, fubar wrote:
Anybody? I guess this is OK with all the good children? unreal |
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Title: Re: The beast has skin Post by Flash on Nov 5th, 2005, 11:06am on 11/05/05 at 10:39:50, fubar wrote:
Well for what it's worth, I'm with you both (DOH obviously)... but I'm not a member of anything :) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 5th, 2005, 11:09am Wendy - this is your big chance. Let's see if you can come up with the goods. I hope you can. There may never be a better opportunity to make peace... as an alternative to one side losing this war. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 5th, 2005, 11:15am Flash I've already asked Bob what he can suggest I can do to help now. what do you suggest that he can't think of? Wendy |
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Title: Re: I've just been banned from the OUCH UK board!! Post by fubar on Nov 5th, 2005, 11:28am Wendy, I'm starting to get it now. The picture that is emerging is pure speculation on my part, but since you won't just come out and say it... I will. Here's my guess (only a guess) OUCH (UK) is run by of board of trustees that basically report to Peter Goadsby. If Peter says something is cool to discuss, then it is cool to discuss. If Peter is hesitant to discuss it, it is taboo. There are no official ties to PG, but in effect he is running the show there. The BoT also also a stodgy bunch who recoils at the thought of anything illicit being discussed, no matter what the context, even if it means helping a suicidal person out of their interminable nightmare. So, the status quo is maintained for several reasons... Peter wants it that way, you want it that way, and the members who could effect a change aren't concerned with the possibility that there may be people who cannot find a treatment that works for them. Does that sum it up? P.S. The 'you want it that way' is evidenced by the fact that you take it on yourself to decide when and if a person actually encounters info on shrooms. You feel it shouldn't be the first thing they see and in fact your deleted a thread for this reason (unless I read you wrong). That's complete bullshit because you are imposing your personal views of the 'scariness' of the shroom info on those who don't have the opportu nity to decide for themselves. So good of you to protect them from the information. That is directly in contradiction to your stated position of wanting this to be discussed. This is a terrible disservice to all CH sufferers that may be under the impression that OUCH UK is an authoritative source of info, which of course it is not (yet) If it is true that PG is responsible for the denial-of-information campaign (indirectly even), then my respect for him is evaporating quickly. Even a doctor (especially a doctor) should recognize the value of research and information gathering. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Roxy on Nov 5th, 2005, 11:34am on 11/05/05 at 10:03:12, pubgirl wrote:
This statement really bothers me. I cannot claim to understand how the UK site works or runs, but we are talking about a mask here. An 02 mask....of which there are all different kinds. Ben's mask actually works much better than others, but from what I understand from this statement.......the BOT will endorse NOTHING for ch's until PG does? Is this correct? Is this PG's site, or an independent CH site to help CH'ers in any possible way they can? What exactly does BOT endorsement do, or does BOT endorsement actually make a difference? Since I have not been to the site since they closed the board down to paying members, I don't understand the difference. Just curious, Roxy |
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Title: Re: I've just been banned from the OUCH UK board!! Post by john_d on Nov 5th, 2005, 11:48am In my mind, endorsement would mean they would make a statement or list products that the OUCH UK endorses. But it seems to them it means that if it's not endorsed, it should be censored. That sux, really sux. That kind of thinking gives me a knot in my stomach. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Sandy_C on Nov 5th, 2005, 12:00pm I hate to do this, but I'm going to quote myself. on 11/04/05 at 13:32:54, Sandy_C wrote:
OUCH UK helps people. When I first began having these awful headaches, I thought I had a brain tumor and was dying. Did a Google search on headaches, and found some references that outlined symptoms similar to what I was experiencing - cluster. Googled "cluster headaches", and lo and behold, several websites popped up. OUCH US, OUCH UK, Clusterbusters, and this site, CH.com. I came here first and just read and read and read. And I learned. Then I joined OUCH US, and learned some more. Haven't felt the need to go to OUCH UK, because I believe I'm getting the information I need here. This site gave me information on the usual meds, as well as "alternative meds". From here, I've visited Clusterbusters, and am holding information I've learned there for my next cycle. For whatever reason, OUCH UK cannot, or will not share information on alternatives. It's their website - it's their decision, right or wrong. IMO, based on what I have read above, their decision is wrong, but it's still THEIR decision. Rather than beat yourselves up trying to get them to change their minds and allow discussion of alternatives, back door them. Clusterbusters, think about opening another website, geared to Europe, the rest of the world will benefit as well. Since Shrooms are illegal almost everywhere now, tailor your website to legal stuff, like seeds. Once someone gets into your website, link it back to the whole Clusterbusters site where they can read about all the alternatives other than seeds, and let them make their own decision. Make sure that all major search engines will pop up your name when the word "headache" is typed in - not cluster, just the word headache. Like I said above in the quote, maybe someone will be helped, despite OUCH UK's reluctance to share what might prove to be that person's lifeline. Again, just my opinion. (ducking for cover now) A SIDE NOTE: I was very dismayed reading above that the OUCH UK site went down, and happy that it's back up again. If someone DID hack into that site, which I know we will probably never prove, and if that hacker is a CH sufferer who, because of this thread, thought he/she would make life difficult for OUCH UK, I go on record, right now, that you, Mr. or Ms. hacker, are the lowest piece of crud on earth. You, no matter how temporarily, denied access to vital information to sufferers just like yourself. Shame on you. Sandy Off soapbox now. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by BikerBob on Nov 5th, 2005, 1:48pm on 11/05/05 at 12:00:26, Sandy_C wrote:
Why don't you just ask the webmaster why the site was down rather than speculating and spreading malicious innuendo here? BB |
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Title: Re: I've just been banned from the OUCH UK board!! Post by fubar on Nov 5th, 2005, 3:32pm Sandy, Lucky for you, you found the info you need. It's not about beating ourselves up because we can't get OUCH UK to change their mind about this. It's about OUCH UK pretending to be the authoritative source for info when in fact they are a really good source for certain info, nothing more. In fact, it's a source for a controlled (very strictly controlled) set of information. If a sufferer is missing out on what may work for them when all else fails, that is an inhuman way to run a site, and we are justifiably enraged about it. It seems that the truth (as slimey as it is) has actually reared it's ugly head. The truth is the site is controlled by one doctor and a bunch of uptight people who use lies and false threats of reprisal to institute a policy of strict information denial. Nothing more. The fact that they help a lot of people in spite of their reprehensible policies is irrelevant and I will continue to say as much until someone sets me straight on any incorrect statements I have made or they change their policy. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Pinkfloyd on Nov 5th, 2005, 5:05pm on 11/05/05 at 12:00:26, Sandy_C wrote:
Other than opening up sites in languages other than english, (which I am considering) I don't see how this would change anything for the better. This is a list of countries from which people have recently visited clusterbuster.com United States Canada Australia European Union Great Britain China Belgium Denmark Italy Germany Sweden France Brazil Netherlands New Zealand Israel Thailand Switzerland South Korea India Japan Portugal Finland Taiwan Turkey Norway Latvia Mexico Ireland Chile Dominican Republic Greece Austria South Africa Argentina Ukraine Philippines Spain Russian Federation Singapore Lithuania Yugoslavia Poland United Arab Emirates As you can see, we aren't difficult to find, if people are told about us or linked to the site in some way. I think I have personally spoken with people from almost every one of these countries via email or phone. I imagine the legal status of these naturally occuring substances may be different in each location. I don't see myself making 144 websites. Since I am the owner of Clusterbusters and the Yahoo group, it should be obvious, since mushrooms aren't legal in the US either, that the legalities concern me (and many others) less than getting out the information. This means ALL the information. People should then make their decisions based upon reviewing ALL the information. I will not tell half the story. We tell the entire story and then its up to each individual to make decisions based upon their own circumstances. As far as I know, it is not illegal to not only visit the site, but read the site and ALL its information. Our job is to put out information that we feel is important to cluster headache sufferers. I won't tell a different or modified story in one country vs. another. As much as I love the British, I care just as much about the guy or gal in Latvia. It may turn out to be less an issue of legalities than any of the other decisions that need to be made, as to whether or not someone in London decides to use mushrooms vs. LSA seeds. I will not choose for them. If I worried about my personal liberty more than getting what I feel is important information out to cluster sufferers, Clusterbusters would not exist. If we only listed what was legal in every country, it would be a blank website. There are many, many people that have put, and continue to put themselves at varying degrees of risk to supply this information. Why should we tell half the story when our risk is not lessened and the chances of someone being helped, are? We realize that there are legal, safety and efficacy issues that surround us and stop people from trying this treatment. I have complete respect for everyone's personal decisions one way or the other. That is why we are working so hard to get the study done at Harvard. Hopefully that will remove at least some of the issues. If, in the end, it helps just one additional person, it will be worth every minute and dollar spent and every risk taken. Why do people risk so much to get this information out to others? Because they know how much it can change someone's life. There are times and places where it is not legal to perform CPR. Let's say you come across a man in need of CRP. Let's also say you knew how to administer CPR and could save his life. Before doing so, you're told you couldn't because it's illegal unless you're a registered to do so. Would you turn your back and walk away or say, "get the f*ck out of my way?" BobW |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Chuffy on Nov 5th, 2005, 7:19pm Seeing as it's my fault this thread exists, ooh you either love me or hate me, I am going to provide tonights intermission. "Good job I never mentioned the dirty fork". ;;D You'll like this. http://www.patmedia.net/marklevinson/cool/cool_illusion.html |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Chuffy on Nov 5th, 2005, 7:37pm Hope you enjoyed that, now back to our main feature this evening The Usual Suspects CULT(UK) Board of Trustees http://www.allposters.com/IMAGES/PF/PF_982186.jpg |
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Title: Re: I've just been banned from the OUCH UK board!! Post by john_d on Nov 5th, 2005, 8:16pm you just posted the photo's of all good people who are working to help cluster headache sufferers in the UK. It's the policy that's the issue, isn't it? If it's something personal than I regret even posting to support this at all. Posting there pictures as if they are guilty of something is really lame. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jimi on Nov 5th, 2005, 8:29pm I agree with you John. It is about the difference of opinions on their policy. Two of these people I have met personally and I know them to be good people. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by fubar on Nov 5th, 2005, 9:29pm For the record, I have no idea what that picture post is all about, and I know at least that ugly one on the right is not a bad bloke, he even bought me a Guinness. :) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 5th, 2005, 10:58pm on 11/05/05 at 11:28:55, fubar wrote:
Shawn Your guess isn't right so am clarifying NOT, hasten to add as an OUCH spokesperson, just because your speculation about PG is unfair and I think your previous good opinion of him should remain (but that is your choice of course) PG is patron (as well as being an honorary member of OUCH US) he doesn't run anything , he wouldn't have the time as I'm sure you would realise, the BOT do. So the rest of the speculation is also wrong so there isn't much point going through it here. I didn't delete anything about shrooms as my post clearly says, never have done, ever and I didn't impose my views, the post would have been deleted otherwise. I locked ONE post so IT WAS STILL THERE, and could still be read otherwise I'm pretty sure it would have been deleted as soon as someone else arrived, and as all others were (and it was at some point subsequently) I didn't "protect anyone" from the info which you would know if you had read my post properly. It was also at the time (if I remember rightly, and I stand to be corrected) that the Psilocybin research link WAS on the site. Even the staunchest shroom supporter and campaigner can perhaps see that in exactly the same way as you do on here and on OUCH US and OUCH Canada, when someone new first arrives, you try and help them identify if it is CH they have at all, then provide information or links/access and to as much information as they could want for them to read and digest in their own time and suiting their own preferences. I would include access to all the alternative treatments with any credibility in this if the decision were mine, with appropriate disclaimers. My personal view (and this is shared by many, including shroomers) is I think it should be something available on the site at first entry point as a resource as that may actually be why the person came to the site in the first place, but in the same way as it isn't here or on OUCH US or OUCH Canada it isn't the first treatment suggestion made. I suspect though I haven't thought it through in detail as it isn't something I can do anyway, that I would even include common alternatives that have little or no credibility as well as it would save answering all the many repeated questions about acupuncture, capsaicin as you can always add a comment such as "this treatment is available but has inconsistent/poor results for most sufferers" or some such statement to alert people to think carefully before parting with their money. All the above is pretty irrelevant though, as the issue still remains that the shroom info isn't on there, and you are arguing with the wrong person (yes, yes, I know, the right people aren't here to argue with, but that ain't my fault!) That's what I think, but frankly what I think isn't at issue here but since I'm the one being accused of all kinds of things, I have the right to defend myself W |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 5th, 2005, 11:48pm Fubar, From what I understand OUCH UK asked PG to be their patron. OUCH UK is not run by PG, it is a cult built around him, not by him. Like any such cult the power lies in how the leaders interpret the words of their God. So in this case what the cult does or does not do is based on the BOTs best guess as to what PG would approve of, and their own personal interpretation of anything he says. Now given that PG is a Doctor, a Professor, and a consultant neurologist at a world renouned institution... well he has to be careful what he says and how he words things, because certain people are likely to blindly act on their own interpretation of his words, even when those are given out of context. So for instance when Cult UK pray to their God and ask for guidance on say the clustermask, he has to say something like "Well I cannot comment officially because it has not undergone clinical trials", which they interpret as "DO NOT USE THIS UNTIL IT HAS UNDERGONE CLINICAL TRIALS". When clearly what he meant was "Don't ask me to give you the go ahead because I must adhere to the rules that govern my profession." The shroom thing is even more complicated because these people have it ingrained into them that illegal drugs are somehow entirely separated from legal drugs by a fundimental difference in their chemical structure. You can tell them that imitrex is the son of DMT (the most powerful hallucinogen on the planet and illegal in most places) until you are blue in the face but they will not comprehend how this can be. You can explain to them that DMT is a neurotransmitter produced within the human body, and the sister of serotonin, and essential to life itself - but this will not register. You can show them textbooks explaining how LSD is the nucleus of the ergotamine molecule, and methysergide is dervied from LSD but they will refuse to believe you. You must understand that illegal drugs are JUST PLAIN WRONG. THEY ARE EVIL, AND THEY MUST BE WIPED FROM THIS EARTH. Remember that DMT being an illegal drug will instantly lead to heroin additiction in 100% of cases. But of course this does not apply to sumatriptan or verapamill which are the next most sacred things to the blood of Christ himself. You can try explaining how psilocybin is counter addictive, and even have a qualified researcher explain this, but deep down they'll still know that they are being lied to, and even getting a little on one's skin would bring about a penniless death in the gutter with a dirty needle hanging out of a perforated vein in a gangerous limb. So if you are a pea brained idiot, and one that has put yourself in charge of a cult, and you ask yourself "In my opinion would our God sanction, our simple minded and overly trusting followers, taking the downward spiral into a junkie death?" then obviously the answer is "No". And as for all the trouble caused by that scumbag Craig 'Flash' Adams and his followers, hey ho, no need to get worked up over that, because they'll all soon be dead from OD'ing on smack or crack or something. That's basically how it works. In a nutshell. *** Wendy, If you are not an official spokesperson for OUCH UK, and you do not have any influence over them, and you do fully support the view that information on alternative treatments be made available (BTW is OUCH UK also censoring kudzu?)... then what the fuck are you doing here arguing their case for them? I mean doesn't your behaviour strike you as a little odd? Do you not yet realise that the only way we can persuade anyone at OUCH UK to talk to someone reasonable and diplomatic like BobW is to stir the shit like this. Do you think that we haven't noticed, that as soon as we turn the heat off, (which is always OUCH UK's first demand) that they instantly stop talking. Why does OUCH UK not carry any information on what's going on a Harvard? Are they implying that the researchers their are criminals and that their work is illegal? Why do they not post links to The Guardian and New Scientist articles? Are they implying that these publications are unethical in their content? Well I've got news for you! Worse is on the way. Much, much worse LMAO! Those articles were just the appetizers :) Pretty soon a certain organisation is going to have to change it's name to 'Out-a-tOUCH UK'. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 6th, 2005, 12:20am on 11/05/05 at 23:48:00, Flash wrote:
I don't "argue their case for them", where have I done that? (May have done years ago but not in recent times) I state how I understand their position sometimes, particularly as you and others are so fond of saying you aren't members so don't know. If there are incorrect statements or assumptions made on here, I state how I understand things as a member. Kudzu was discussed on the Members Board but I seem to remember no-one was much interested and the thread died. Seeds have a post now, but again, no-one seems much interested. It may be because those who are, tend to come here because they will get info from people actually using them. I only know of one person in the UK who has tried seeds and he is the one posting and the only person who posted about Kudzu was taking multiple drugs with it and ended up in hospital with serious heart issues. That didn't give people much of an incentive to look into it further, and if they did want to, again I think they would come here. r.e. the Harvard stuff, getting a bit fed up repeating this but here it is again. Bob and I worked really hard to get the BOT to agree to the research links being put up on OUCH, they went up, stayed for a few months, there was a very unhelpful post from Andrew Sewell which I wish I had kept and now can't find, something along the lines of the research not existing and only being in proposal stage. This may or may not have been the reason why, some time later, the link to the research was removed. I was not told it was going to happen or why and was mighty pissed off as I felt I should have been told as I had been the member lobbying the BOT directly. r.e. the last para. You and I will never agree on this so no point debating. I won't be involved in anything which takes OUCH UK offline, or hurts any of its members or officials, even for a matter of principle. Wendy |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 6th, 2005, 12:24am Re: the last para - I was speaking about more CB media coverge being forthcoming. Doh! What are you still doing up? You must really work in a pub! |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 6th, 2005, 12:27am I remember the post from Andrew. He was explaining that the work he is undertaking is the precursor to any clinical trial, and thus the title of the forum was misleading. The way he worded this might have confused some people who doubtless interpeted this as "There are not and never will be any clincial trials and clusterbusters are liars!" Then deleted the whole forum. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 6th, 2005, 12:28am decommisioned pub Have problems in the USA at the moment and all the calls come in the small hours and I like to be there when they come. and I have had semi-nocturnal habits for years anyway made worse by CH/created by my deformed brain/genes who knows? W |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Pinkfloyd on Nov 6th, 2005, 12:35am I'll be back when you folks are on page 15. I can't take the scrolling back and forth while I'm alternating between laughing and, well, laughing harder. What the HELL is a Whacky Race? Are ALL of you sitting at the Pub right now? Bobw I'm sorry as I'm sure the people who's faces are on page 14 aren't laughing. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by fubar on Nov 6th, 2005, 1:06am on 11/06/05 at 00:35:23, Pinkfloyd wrote:
Thank God we didn't see them on page 3 :) Thanks for the explanation Flash, it makes more sense than any of the crazy theories we had to think of in place of the deafening silence from anyone who might be able to answer with authority. It's a sad state of affairs, me thinks. I'm glad there are other resources and I can only hope that most people will find them. I think it's amazingly sad that OUCH UK operates this way and that their constituants allow it to continue. I apologize for offending those who can't understand why this matter required some intentional fouls to stir up the shit enough to get people to talk. I hope the BoT at OUCH UK is intelligent to take notice and do some serious self-examination. Perhaps they will change, perhaps they will not. A quote comes to mind: Oliver Wendell Holmes Jr. "The mind of a bigot is like the pupil of the eye. The more light you shine on it, the more it will contract." Seemed appropriate |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Chuffy on Nov 6th, 2005, 5:30am on 11/05/05 at 20:16:06, john_d wrote:
They are guilty of nothing more than witholding information from their members under false pretences. Oh right. Anyway, sorry to see that one of the side effects of whatever (taxable) meds you are on is erosion of any semblence of a sense of humour that you may have had to start with. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jonny on Nov 6th, 2005, 6:03am on 11/06/05 at 05:30:45, Chuffy wrote:
You are guilty of being a fucking ass-hole. you can either remove the pictures or I will ask DJ to remove them! Its your call! |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Chuffy on Nov 6th, 2005, 6:12am on 11/06/05 at 06:03:28, Jonny wrote:
Well that's charming. What's your problem they are already in the public domain, it's not like I have exsposed anyones identity? Look here http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_welcome.cfm&added=Dec2001&code=AD |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jonny on Nov 6th, 2005, 6:16am I dont have to look anywhere, if you have a bitch with them, fine....if you want to personally attack them then this is not the board for it! The one thing that DJ will not stand for is personal attacks and those pics make it so. Like I said....its your call! |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Chuffy on Nov 6th, 2005, 6:25am on 11/06/05 at 06:16:38, Jonny wrote:
Do what you want, if you see it as a personal attack on them then that's your call buddy, if you tie it in with the post I did immediately above it then you should see it's a joke? Anyway, as I said, do what you want and while you are at it do a Google search for someone who actually gives a shit what you think. See, I can say nasty sweary type things as well [smiley=laugh.gif] |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jonny on Nov 6th, 2005, 6:29am Thats cool with me, when DJ removes the pictures he might just remove the whole thread. Free speech aint free, dicknuts ;;D...so much for your message ;) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Chuffy on Nov 6th, 2005, 6:36am on 11/06/05 at 06:29:54, Jonny wrote:
Hmm, Dicknuts, is that a sign of affection? Picture changed, wouldn't want to lose this thread now would we?????? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by zanychef on Nov 6th, 2005, 6:37am the pics are simply wrong to post here!!! ok they are in the free domain but to link them and this long winded thread is OUT OF ORDER!!!! please remove them the bitchiness and personal attacks are getting on my nerves in what is a serious isuue.... |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jonny on Nov 6th, 2005, 6:39am Thank you......I agree with your bitch, but we dont need to make it personal. I hope you can understand that. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by CHTom on Nov 6th, 2005, 9:36am I don't understand why almost 350 responses have been made to this topic-it has become a sort of Troll heaven! Whenever things start to die down, various people write something that starts the hostility back again. Who really gives a fuck about what the OUCH-UK BORED does or says? The members there know about us and can always come here to ask questions and discuss the "forbidden" topics that OUCH-UK will not allow. The OUCH-UK BORED obviously want that site to only contain certain information and as long as their members tolerate being censored there really isn't much that we can do about it. The members, it appears, don't want to start a revolution (I'm glad that they were not here in 1776!) and as long as that is the case then there isn't much that we can do about it. I am sorry that they are denied the free flow of information that we have and that they accept the BORED's explanation that certaint topics, such as LSD, seeds, etc., are illegal to discuss-not true at all. I feel sorry for their members who have allowed-and continue to allow-what they can and can not discuss be decided by others, but it is up to them to change things on their site if they want to, not ours; I'm sure that they know how we feel by now. I think that we should spend our time and energy continuing to work on finding a way to cure or minimize the symptoms of our terrible disease, offer support to each other in times of crisis, whether CH related or not; the Brits can always log on to us or even join-for free, no less! Some of the posts on this subject are degenerating into name calling and personal attacks upon fellow sufferers-come on, we are really better than that. Let's just end this thread and move on to the real business at hand-helping each other out with emotional and other support when needed, exchanging ideas for beating the beast and telling bad jokes, which ae always the best! I wish good luck to our UK brothers and sisters and PFDANs as much as possible and invite all of those who want to to join our group-can't beat the price. "Ibbida, ibbida, ibbida, ibbida, that's all folks!" |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pattik on Nov 6th, 2005, 10:04am on 11/06/05 at 09:36:00, CHTom wrote:
..you mean like this post of yours? ::) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by john_d on Nov 6th, 2005, 10:05am on 11/06/05 at 05:30:45, Chuffy wrote:
thanks for removing them |
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Title: Re: I've just been banned from the OUCH UK board!! Post by nani on Nov 6th, 2005, 10:15am on 11/06/05 at 10:04:30, pattik wrote:
Pat, you read my mind, LOL. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by vietvet2tours on Nov 6th, 2005, 10:19am http://i10.photobucket.com/albums/a150/vietvet2tours/f9ha2b.gif Reminds ya of this post.It just never ends. Potter |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 6th, 2005, 10:24am on 11/06/05 at 09:36:00, CHTom wrote:
Tom - let me explain it to you. People in the US have freedom of speech ingrained into them. Whereas in the UK a very small number of people have it bred into them to be elitist. These people truely believe that it is their place and their duty to make life and death decisions for the rest of us. It's known as the nanny state. Not only are you forbidden to do certain things, you are forbidden to talk about them. It's an unwritten law. It's what we call The Establishment. I'm not part of it BTW! The big problem here is that not everyone who is in contact with OUCH UK is on-line. The Internet has less penetration among UK society than it does in the US. OUCH UK is not just an on-line society like CH.com. Another problem is that OUCH UK is considered to be the official voice for CH sufferers in the UK. They carry more sway with the doctors, policy makers, and drug companies than the individual sufferers do. So when I lobby my MP for dispensation on mushrooms being made illegal... OUCH UK may well end up being consulted by the policy makers. Now hopefully you see the problem. If OUCH UK deny that they have ever heard of the Cluster Buster treatment, or state that they consider it to be dangerous, harmful, of little merit, or even just a vicious Internet rumour being propegated by junkie scum... then CH sufferers in the UK are up shit creek without a paddle. There are several other CH websites in the UK that do not mention Cluster Buster treatments, and some even forbid discussion on them. But those are independent efforts not 'official' ones, so yes those are entitled to play by their own rules. But OUCH UK is the offician spokesman, it must act fairly and must be held accountable. Cluster Busters is an international organisation. It's website is already presented in English, and people from other countries can use translation software. Copying the same site and making it .co.uk would be pointless. It would be better for people in the UK if OUCH UK did not exist than to have it impeding this treatment. And I do not say that lightly. Right now the CB treatment is the best treatment we have, by a country mile! It truely gives people their lives back. It saved mine, and as a result I have been mostly PF for the past 12 1/2 years. During that time I have suffered 12 weeks of CH, under normal circumstances I would have experienced 102 weeks of CH. Nothing else provides relief to that extent. We are not forcing anyone to read this thread. You clicked on it. If you don't like it being serious, and 14 pages long then don't revisit it. If you do not understand at least one side of the argument then please refrain from making it any longer. No offense but this issue may be life or death for some people in the UK. And as has already been pointed out, this site CH.com is "The Worldwide Cluster Headache Resource". I had assumed that meant truely worldwide and not worldwide as in 'world series' LOL! On a personal note, it also hurts me that I am one of the pioneers of this treatment and I am British, and the very people who should be supporting this are up against me, with the weight of officialdom on their side. You are very lucky in the US that OUCH US is doing everything it can to support this treatment, and has even donated money to the MAPS. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by CHTom on Nov 6th, 2005, 10:36am I understand the thread, Flash and it has been my choice to read it, but while it is helpful for venting feelings and putting forth valid agruments about the apparently repressive policies of the OUCH-UK board, it appears that what is written here is not having any effect upon OUCH-UK or its board members or policies. Perhaps if more OUCH-UK members wrote in it might help, but given the lack of response form the governors of OUCH-UK, it appears that the opinions expressed here are having no effect upon them or their policies. I wish you luck-perhaps if enough OUCH-UK members object to the board policies the members of the board can be replaced with a more open minded bunch. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by vietvet2tours on Nov 6th, 2005, 10:39am http://tinypic.com/fdaelx |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 6th, 2005, 10:52am on 11/06/05 at 10:36:00, CHTom wrote:
It is encouraging them to negotiate behind the scenes. I guess by not contributing they are hoping it will die. It won't. And if it goes on for much longer then the search engines are going to have it ranked right next to their site. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Cathi04 on Nov 6th, 2005, 11:09am Is that right, Flash??????? Soo, by posting here, making this thread longer still, I might be helping to make this big enough that search engines might pick it up, and people looking for info regarding CH..and perhaps alternative treatments, just might have the opportunity to learn? OHh, please reply! Thank you, Flash, for all you and Pinky and the Gang have done! Cathi 8) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by nani on Nov 6th, 2005, 11:42am on 11/06/05 at 11:09:33, Cathi04 wrote:
Yes... thank you!!!! While I am still fighting, this has proven to be the MOST EFFECTIVE TREATMENT FOR CLUSTER HEADACHES that I have found yet! And I've tried almost all of them. So, Cathi...if we keep posting with words like...MOST EFFECTIVE TREATMENT FOR CLUSTER HEADACHES, and include a link to, um, www.clusterbusters.com folks searching for treatments might see this thread? Well, count me in, I guess... FIND THE MOST EFFECTIVE TREATMENT FOR CLUSTER HEADACHES at www.clusterbusters.com My only agenda is to get ALL the information that we have available out to fellow sufferers. Just like the Clustermasx... http://www.clustermasx.com/people should know that there is a SUPERIOR PRODUCT FOR OXYGEN DELIVERY. ::) edited to add: I am not a doctor. This account based solely on personal opinions. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by vig on Nov 6th, 2005, 11:46am on 11/06/05 at 11:09:33, Cathi04 wrote:
that's good to know! thanks. 8) for me, it has been the most effective at eliminating/reducing the CHpain with the least amount of side effects and the most infrequent dosing allowing me to be released back into the wild. 8) without the links AND the discussion from CH.com, I would not have found it. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Redd715 on Nov 6th, 2005, 11:49am Very good to know indeed.... |
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Title: Re: I've just been banned from the OUCH UK board!! Post by nani on Nov 6th, 2005, 11:51am Maybe it will pass the kudzu thread in pages? :) note to self: send a check to DJ |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pattik on Nov 6th, 2005, 11:52am on 11/06/05 at 11:42:40, nani wrote:
I just typed this phrase into Google, and CB site was second, only behind CH.com... :D now for the Clustermasx (http://homepages.nildram.co.uk/~tritech2/clusterx/index.html) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Redd715 on Nov 6th, 2005, 11:58am I got the same thing when typing in MOST EFFECTIVE TREATMENT FOR CLUSTER HEADACHES. Pretty amazing how that works. I'm in awe... ;) |
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Title: a pain of glass Post by rumplestiltskin on Nov 6th, 2005, 12:00pm Imagine a big window that has a lot of Clusterheads in pain looking through it. On the other side of the window is information that can stop the pain. The window is clouded and this info can't be seen. We are simply hoping to make it easier to see thru. Those of us who wish to have this info visible do not accept ANYONE, ANYWHERE for ANY reason suffering one Clusterheadache. Those who want us to shut up about it...have an agenda which is not sympathetic to their fellow Clusterheads...they are choosing to allow others to suffer CH. Those who are actively keeping the window clouded are complicit with the beast. They are no less than enemies of all Clustheadache sufferers...no matter what white robes they wear... den PS: Excuse me...could you duck down or let my child stand in front of you so that he can see...his head hurts again. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by nani on Nov 6th, 2005, 12:01pm on 11/06/05 at 11:58:58, Redd715 wrote:
Those were my words exactly when I went 35 DAYS WITH NO CLUSTER HEADACHES AFTER BEING CHRONIC FOR 5 YEARS!!! |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Drk^Angel on Nov 6th, 2005, 12:03pm * Drk^Angel smashes his head through the window... "Make it stop! Good Lord, let this thread die!" PFDAN......................................... Drk^Angel |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Sandy_C on Nov 6th, 2005, 1:31pm on 11/05/05 at 13:48:06, BikerBob wrote:
I'm sorry Bob. I'm not trying to spread malicious innuendo anywhere. Earlier in the thread, I believe it was Margie who alluded that the OUCH UK site had been hacked into, and that this is why the site went down. I went off half-cocked in anger at the thought that anyone would do something like that to a website that does help people - maybe not as much as they should be doing, but, nevertheless, some people are being helped. I apologize for blurting out in anger. I didn't follow my own rule - if you've written something in anger, never, ever hit that send/post button for at least 24 hours. Will you be my friend again, pleeeeze??? Sandy |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Sandy_C on Nov 6th, 2005, 1:38pm on 11/05/05 at 17:05:54, Pinkfloyd wrote:
Bob That list is very impressive. I had no idea! It's wonderful that so many people worldwide are finding Clusterbusters. You are the website expert here - I'm just a wordy B***h who should probably think a bit more before I go spouting my [smiley=twocents.gif] And yes, I know CPR, and no, I'm not currently certified, but I would say "Get the fuck out of my way!" Thanks for your good work in helping battle CH. I mean that. Sandy |
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Title: Re: I've just been banned from the OUCH UK board!! Post by BikerBob on Nov 6th, 2005, 1:53pm on 11/06/05 at 13:31:28, Sandy_C wrote:
http://bestsmileys.com/kissing1/1.gif BB |
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Title: Re: I've just been banned from the OUCH UK board!! Post by E-Double on Nov 6th, 2005, 2:57pm on 11/06/05 at 11:52:08, pattik wrote:
On yahooo.....CB was #3 while CH.com was 13 |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jonny on Nov 6th, 2005, 3:22pm Flash.....CHTom is a troll......do you really want to be nice to trolls? ;;D Check his resume, John/ Hdido/ CHTom Im sure I missed one or two names he has used. You are who you hang with! |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Chuffy on Nov 6th, 2005, 6:26pm on 11/06/05 at 12:03:58, Drk^Angel wrote:
Please just be quiet.........please. All your posts have been along the 'please let this thread die and go away' line, what's your beef man, as Flash said (in a far more articulate way than I ever will), it's like people who complain about TV shows, just switch off, freedom of choice in action dude!! By the way, any time any of you Pro Cluster Busters want to thank me for starting this dull (yawn) thread that may change the way EVERYONE with a modicum of decency and a brain views this subject, I'm all ears. Yeah right, I'll wait Peace and love buddies. ;) I'm off to write a song that goes "Pain Free Dan ..lives in a van.. he never stops he's a go getter..." |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jonny on Nov 6th, 2005, 7:10pm on 11/06/05 at 18:26:35, Chuffy wrote:
Just keepin the river flowin, eh? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Drk^Angel on Nov 7th, 2005, 4:18am on 11/06/05 at 18:26:35, Chuffy wrote:
Ya ever notice how everyone wants freedom of speech until someone says something they don't want to hear? :P PFDAN........................................ Drk^Angel P.S. This is more fun that pokin' a Brit with a sharp stick. Quick... Someone say something about shrooms to wake Flash up... And who wants to say something about O2 masks? ;;D DA |
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Title: Re: I've just been banned from the OUCH UK board!! Post by zanychef on Nov 7th, 2005, 4:22am on 11/07/05 at 04:18:57, Drk^Angel wrote:
ok here goes........ 'shrooms are a good psssibility but not for me :( clustermasx rock!!!! |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 7th, 2005, 2:19pm At this point it may be useful for those that have tried this treatment (whether successful or not) to add their testimonials. Here's mine: I am 35 years old, was previously episodic, and have suffered from CH since 1986. The medications prescribed to me were analgesics, propanolol with amitriptyline, and pizotifen. None of those were in the slightest bit effective. The analgesics aggravated the condition, the amitriptyline made my heart beat irregular and turned my eyes yellow, and the propanolol slowed my heartbeat down to an alarming and dangerous level. I was also prescribed ergotamine, methysergide, and sumatiptan but decline those because I was too scared to taken them. I accidentally commenced the Clusterbusters treatment in January 1993. I have since experienced only 12 weeks of attacks as opposed to the anticipated 102 weeks. Those 12 weeks of pain were entirely due to supply problems - I was unable to dose. My longest remission between doses is my current one of 2 1/2 years, hence why I use the term 'previously episodic'. The best I managed before the CB treatment was 6 months. The last time I dosed was April 2003. From memory I have taken a total of 14 doses of hallucinogenics in almost 13 years. The active ingredients in these doses have a total approx combined weight of approx 30mg. Please note that a single aspirin tablet weighs 10x that! That averages out at 2.3mg (that's TWO POINT THREE MILLIGRAMS) of drug therapy each year to prevent CH!!! I rate the Clusterbusters treatment as 10/10. I find it 100% effective. The most serious side effects I have experienced as an anxiety attack when I accidentally took too much. Other than that only the odd bit of gas. I no longer use any conventional medications, and have not done so since April 1995 (before I fully understood the Clusterbusters treatment which was September 1995). This treatment has saved my life. *** OK - no surprises there then... next :) NOTE: A typical clusterbusting dose of EITHER: a) 1g dried cubensis mushroom contains 1-3mg of Psilocybin. b) a quarter of a blotter hit of LSD contains 10-30mcg (that's micrograms = 1000th of a mg) of LSD c) 20 rivea corymbosa seeds contain 1-3mg of LSA d) 3 hawaiian baby woodrose seeds contain 1-3mg of LSA ADDITIONAL INFORMATION: The clusterbusters treatment appears to work spectaularily well for me. I know realise that I am one of the very lucky ones that responds to even a single small dose. This was likely an important factor in my stumbling over this treatment in the first place... Having said that, even the toughest cases where people have to dose with say 1.5g every 5 days in order to remain pain free, these people are only ingesting perhaps 150mg of active ingredient in an entire year. Or in other words a total chemical weight of 100th of an aspirin tablet each week! Even that must count as fairly spectacular! How much verapamill does the average chronic subject use each year? My guess is 173g. That's GRAMS not milligrams. That's almost a kilo of that shit in 5-6 years! Also the anecdotal evidence we have collated may indicate that the treatment becomes more effective with time. many subjects report being able to reduce their dose and extend the intervals between / reduce the frequency of dosing. *** Margi - if you are reading this, then here's some info that may be of use to Mike. Many of the clusterbusters have experienced issues with the treatment at some point, however these are usually resolveable. Personally I have experienced problems dosing too little too late in the day, and also with anxiety attacks or bad trips if I take too much. Going forward I plan to start using rivea corymbosa seeds. These contain a small dose of LSA, and all the reports to date indicate virtually nothing in the way of side effects, but and they appear to be at least as effective as the shrooms perhaps even more so. Most people are using around 20, but I'm a chicken shit so I'll probably start with 5 and work my way up LOL. These seeds are also legal in most places. So if you'd like to give this another go, then perhaps try a few maintenance doses spaced a month apart, on the lead up to his next episode. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by vig on Nov 7th, 2005, 2:50pm on 11/07/05 at 04:22:07, zanychef wrote:
perhaps you can explain to us why this is so... I don't think it's for everybody either, but maybe we can help people make good choices.... |
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Title: Re: I've just been banned from the OUCH UK board!! Post by rextangle on Nov 7th, 2005, 4:44pm Ok... here we go. 40 years old - Chronic for the past 3 years. Quiet all meds and alcohol last November after bad reaction to Prednisone. Neuro tried Verapamil, Indocin, Propanolol, Maxalt, and I'm sure I forget some... None of these meds worked. CH attacks were out of control and the side effects of the meds were nasty. Used to get hit non stop all night with kip 8-10. Found out about clusterbusters and grew my own mushrooms. I've dosed several times with great success. I've gotten up to 13 days of relief at once, and now I'm down to 2 hits per night like clockwork. I abort them with 02 using the Clustermasx and a "Happy 540 Regulator"- just ask if you don't know what that is. I've also dosed using LSA seeds and LSD with equal relief. Now doing the SPUT every once a while. I don't shadow that much anymore and 95% of my days are pain free. A no brainer! Next.... Rex |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Dave_Emond on Nov 7th, 2005, 5:35pm Different type of testimonial, but worth reading: I am chronic with CH, I also suffer from another, yet to be diagnosed ailment. I contacted ClusterBusters with all the information I could provide and asked if they would suggest I try any of their treatments. I got a reply that they would study my case and even consult with the doctor from Harvard. I got a reply with deepest sympathies as to my condition, but was told I should not attempt any of thier alternative treatments at this time in concern for my safety. I was disheartened, but could appeciate more the honesty shown and hence my respect for ClusterBusters is at the highest regard. Every Clusterhead should have the right to know they exist, read their information, ask questions if you have them and then make up an individual decision as to whether or not to try this alternative method. To censor out links to ClusterBusters or conversations about them is the real "crime" in my humble opinion! Thanks, Dave (And thanks ... ClusterBusters!) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Kateeast on Nov 7th, 2005, 5:45pm I'd just like to say that i started with 28 seeds and have dosed twice more with the same. No side effects apart from a 'normal' headache. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Sophie on Nov 7th, 2005, 5:59pm And this is my story: 62 yr female. Suffered CH since 1995 or so (sinus). Diagnosed in 2003 and took every tripton ever made. Started the same in 2004---but concern over too many triptons led to InnoPranXL 80 mg. That didn't work, so the big Topamax trip began. When I couldn't remember my name I flushed them and started reading CH.COM and CB. The spring of 2005 I began my psilocybin treatment. It took about 4 doses of 1.5g to 2g. I decided 1g was good for me. My cycle was brokenexcept for a couple breakthroughs due to sun and heat. I used HBWR seeds as maintainence. Then went to RC seeds (12) to maintain. On occassion I have used ginger or red bull to knock a shadow. I have been PF for about 7 months--I'm episodic---and an ordinary year would be 2 or 3 cycles. This is my first year and I'm feeling very positive---I plan to do maintence dose every qaurter. I rate this CB treatment 10/10 and report no side effects. Sophie ;;D |
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Title: God help us all. Please. Post by BobG on Nov 7th, 2005, 6:01pm 16 pages! Unfuckin'believable. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Bob P on Nov 7th, 2005, 6:52pm Yeah but 14 of them consist of nothing but Flash and pubgirl! |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 7th, 2005, 7:34pm Well while we're washing our dirty laundry we might as well revisit the everyone's favourite controversial topic of... aaarghh... wait for it... DETOXING :)) Here are the main reasons why we at Clusterbusters advocate the detox: 1) Scientific. We are playing at trialing a new drug here. The reason we are doing this is that so far nobody better qualified has done it for us. We've been trying to do this as carefully as possible since 1995. The data we have gathered has gone a long way towards convincing the researchers at Harvard to do some proper research. The results that count the most are the ones where the subject has no other drugs in their system. If anyone has ever taken part in a scientific experiment involving putting stuff into their body, then it is not unusual to keep a record of everything that goes in during that time. We've tried to do that as best we can. This has given our testimonials just a little bit of credibility. 2) Baseline. We have noted that in most cases detoxing initially results in an apparent worsening of symptoms, followed by a significant improvement. We know this because many clusterbusters have kept diaries, logs, and charts. One technique is to multiply the kip intensity of each headache by it's duration in minutes, and sum these to provide a total pain score for each day. Typically the first 2 weeks of detox sees an increase in pain score, subsequently followed by a longer term reduction. In some cases this has been a dramatic reduction. Some of us believe that no treatment is the second best form of treatment. And once the subject has acheived baseline they can then accurately monitor the effect that the shrooms or seeds or whatever have on the condition. 3) Failure. In the event of a failure it is important to establish that this was indeed a failure of the treatment rather than a blocking or hindering of the treatment. There is much more to be learned from failures and difficult cases than from easy kills. Of course we don't like failures but most of our useful experience has been derived from difficult to cure cases. And there's are greater feelings of achievement, reward, and satisfaction from solving these. It's realtively straightforward to suggest altering the dose, the frequency, switching from shrooms to seeds or vice versa, trying a different strain etc. It's much harder to gauge what's going on if there's other drugs thrown into the mix - they may or may not be interacting. It gets very frustrating. 4) Success. Most of our successes have been with people that have fully detoxed. This might indicate that the treatment works best in isolation. We suspect that detoxing offers the best possible chance of breaking the cycle. 5) Safety. We really do not know how LSD, LSA, or psilocybin are going to interact in combination with other medication. It is better to be cautious when it comes to your mind and bodies well being. There is plenty of data out there to demonstrate these substances are very safe and non toxic when taken at low doses and in isolation from other drugs. I hope this clears up the detox thing for once and for all. EDIT: So far the best confirmed failures of the treatment have been with people that appear to be immune to hallucinogenic drugs. For these individuals even extremely large doses appear to have little or no effect, not just on the headaches but in terms of everything. They do not even report a mild buzz from a dose that should send them to the moon. WE KNOW FOR A FACT THE HALLUCINOGENS FAILED BECAUSE THERE WAS NOTHING ELSE TO BLAME IT ON. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by BlueMeanie on Nov 7th, 2005, 9:17pm on 11/07/05 at 14:50:16, vig wrote:
Not sure of Zany's reason, but Class "A" felony which can result in up to 7 years in prison seems reasonable. :o |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Chuffy on Nov 8th, 2005, 3:27am I am 40 years old and been episodic since the age of 15. My doctor nor anyone else on the planet (dentists, chiropractors, etc) seemed to know what was wrong with me so for many years I suffered without any meds at all, save paracetamol. My Doc at the time thought it was Sinus and being Hoemeopathic (never again) injected my neck for several weeks with some lemon juice concoction, didn't work of course but I had the clearest sisnus's in the UK. I remember being hit at school and having to deal with it, wandering round the playground hoping nobody would stop me for a chat, or at work and going off to hide in the toilet. In retrospect I now realise that I was actually better off in some respects before I discovered meds or knew what CH was. I just thought I was a freak and this was my lot, deal with it. I used to have to carry on doing many things with an attack in progress. Once the band I was in auditioned for Pink Floyd's producer while I had a Kip 7-8. I used to find varying degrees of relief in the strangest ways, I think that particular day was a ham sandwhich loaded with really hot mustard, worked on a distraction basis. Anyway, moved house, changed Doctors, for some bizarre reason he knew about CH. He prescribed Propanalol, didn't work, then Cafergot which did. Now I knew what was wrong with me and in a way it made it worse. Whereas before beleive it or not I hadn't seen any real pattern to it apart from maybe seasonality etc I was now expecting attacks. Whether that helps them to come on or not I can't tell, but I have a sneaking suspicion. Since diagnosis (1989), I have been hit twice a year or so, the only PF time during that was when I did Shrooms recreationally but didn't see a connection at the time(thingy). I then heard about the Shroom treatment from a friend who had read/heard about it somewhere and as the Cafergot was making me feel like shit and starting to lose effectiveness I gave it a go. I did one 1.5g dose two weeks into a bout and that knocked it for six. I kept shadowing so did the sip method then another 1.5g dose which aborted the cluster. This was probably unnescecary as I have since found after dosing the beast gets mighty upset and trys to fight back, if left alone he dies. This has just happened this year, started getting shadows, 1.5g dose, shadows worsen slightly, then disappear altogether. I had also done 'maintenance dose' 6 months ago and am, 'touch wood', fully PF and can hopefully call myself ex-episodic. I also discovered the O2 treatment about the same time but only got to use it on a handful of occasions (another miracle, thankyou Curt) before the beast was beaten ( I now have a wardrobe with about 4 CD cylinders in waiting to be used). Read these testimonials then decide whether people should know about this marvel. ;) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by zanychef on Nov 8th, 2005, 3:31am on 11/07/05 at 04:22:07, zanychef wrote:
ok here goes .... took a theraputic dose 3 years ago in ipswich after 10 mins i was expieriencing what i call an 'unreal' feeling i was sweating profusely too i didnt feel comfortable at all :( this passed after 30-40 mins(still not quite sure of how long) was ok to drive home after that the next morning this feeling returned again but this time when i was driving :( i had to pull over which then made me late for work :( as i drive all over the country for my work the i am not prepared to take the chance of having an accident and either injuring someone else(or myself) let alone losing my liscence hence the 'not for me' my [smiley=twocents.gif] ian p.s. i hope that this makes some sort of sense to you all and those that find relief with shrooms all the best ,those who wish to try all the best ;;D |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 8th, 2005, 3:54am The lessons here are set, setting, and prior planning. In other words do not drive to someone else's house to trip then have to drive home 40 min later - that was irresponsible. There are other people using the roads too! And make sure you have the next day free becuase you might feel a little odd. Seeds are legal BTW and have far fewer side effects, especially RC seeds, so no chance of going to prison etc. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by zanychef on Nov 8th, 2005, 3:55am on 11/08/05 at 03:54:04, Flash wrote:
am looking into seed and kudzu ;) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 8th, 2005, 4:11am on 11/07/05 at 17:35:18, Dave_Emond wrote:
Thanks Dave! Nobody wants to see anyone else get harmed, or have to live with that on their concience. The clusterbusters treatment is not without risks, but at least people are fully aware of these at the outset. My doctor never told me that propanolol would almost kill me. The only became apparent when my heart rate dropped to 30bpm. Which was nice. For most people the biggest dangers are probably interaction with opther drugs, hence we tend to recommend a sightly different approach for those unable or unwilling to detox. There are 3 main methods: 1) The most popular method is to take what is considered a light dose, say 1g dried cubensis shroom, or 20 RC seeds. This is repeated every 7 days until the symptoms abate. The 7 day gap is there because a dose of this size or larger sometimes makes things worse before they get better. 2) The whack it hard method involves taking a larger dose, usually about twice that of method 1) every 4-5 days until the beast is hammered into submission. This works better for some people, but is less effective for others. 3) The sip method. This more closely resembles how conventional medications work. It involves taking very small doses about 1/4 of that in method 1) 2-3 times each day. We suspect there's a bit of loading up required and this may take a couple of weeks before any improvement is noted. This method is often recommended to people that cannot or will not detox because it's slightly less risky in the event that there's an issue with existing medication. For everyone else it's slightly more risky becuase there's not much data on what taking a small dose of hallucinogenics every day does to your body. Whereas we know for a fact that a light dose once a week is pretty much harmelss. Sip dosing can also be used by someone that is nervous of taking these substances, or prone to anxiety attaks. Some people take infrequent sip in the gaps between doses in methods 1) and 2) to provide some relief from niggling attacks. A small number of people, including some difficult cases, find sip dosing to be more effective. Each of these methods can be performed with shrooms and seeds. Blotter acid isn't really suibale for sip dosing. Some people report using SPUTS which are small pieces under the tongue. Perosnally I believe that a sip dose has more chance of working. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Margi on Nov 8th, 2005, 9:28am on 11/07/05 at 14:19:32, Flash wrote:
Yes, Flash, I'm still reading every word of this. And, yes, I'm following the seed therapy very closely, also the discussions over at OUCH UK on it. Very well might be our next plan of attack. Thanks very much, Craig, for thinking of us. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by ben_uk on Nov 8th, 2005, 10:18am Life, liberty and the pursuit of medicines http://www.newscientist.com/channel/opinion/mg18825242.200 http://tinyurl.com/ax3uu From issue 2524 of New Scientist magazine, 05 November 2005, page 49 LET'S look at some disturbing figures. The use of prescription drugs in the US has soared. In 1993, the average number of prescriptions per person per year was seven; by 2004 it was up to 12 - and rising. That's some 3 billion prescriptions and a cost of $180 billion. So is the richest nation also the sickliest? Have the drugs stopped working? According to journalist Greg Critser, who's spent years studying the pharmaceutical industry, the reason is that these drugs (which, remember, require a doctor's or healthcare professional's authorization) are now central to the national notion of health. For John and Jane America, their parents and their kids now see prescription meds as "partners - their message about why they work...almost as important as the pill itself". The public still trusts them despite a proliferation of concerns about the safety of many drugs (COX-2 inhibitors, SSRIs, Ritalin, ACE inhibitors) and their unintended effects on the gut, brain, liver, heart and lungs. For Critser, the irony is that the generation that experimented with drugs is now a generation the drug companies are experimenting with. Critser's Generation Rx is the latest addition to a growing pile of books attacking Big Pharma. Like those before him, Critser details the shenanigans of lobbyists, the weakness of the FDA, and the manipulation of public and doctors via direct-to-consumer adverts and off-label prescribing. But perhaps the strongest and most unusual part of his book describes the US of today as a nation of pharmaceutical tribes. Starting with the Tribe of High-Performance Youth, the use of prescription drugs for depression, attention deficit disorder and a range of other psychiatric and behavioral problems is turning American kids into the most medicated generation ever. Why? Because of their parents' wish that they "perform well in a society of ever-increasing demands to perform well, nay, superbly". This group may constitute the biggest recipients of "off-label" prescribing, where manufacturers encourage doctors to prescribe their drugs for conditions and diseases not covered by the original license. Next comes the Middle Years Tribe, or the Tribe of Productivity and Comfort, who take cocktails of antidepressants, painkillers, fat and cholesterol-busters, and libido enhancers. These drugs shore up their "ability to produce more and better, and to relieve discomfort, including the discomfort of having to watch what we eat and drink". The old also join in the drugs fest as Critser's Tribe of High-Performance Ageing. They want both to alleviate the obvious discomforts of ageing and to extend life - the latter to such an extent that doctors are worried about polypharmacy (the piles of pills our grandmas take, many of which their own doctors will have forgotten prescribing). For the old the prescription medicine chest is at best a very mixed blessing. This part of the book is the most fascinating and disturbing. A strong drive for medical fixes, for an ever-better quality of life, for being "more", all make Americans (with the rest of the developed world close behind) willing consumers and thereby colluders with the drug companies. In a new way, Critser has attempted to answer the question implicit in his subtitle: how it is that pills have become key transformers of American bodies and culture. After all the analysis, Critser is obliged to offer solutions. And he does. First, the fairly obvious litany: reining in Big Pharma with tough government, enforcing transparency on vested interests, improving drug testing and safety feedback, and so on. Again, his societal answers are more telling: stop being consumers of health, get healthy lives, don't be part of the off-label experimentation, think about work and health, and set up wellness programmes. But his biggest point, and one to pursue, comes in his sign-off: "Americans and pharma must recognize the mutual intensity, emotionality and deceptiveness of their co-dependence. We need to shed synergy. Only then can we learn where our true interests converge and where they depart. The stakes are high. It's your money and your life." Patricia Wilkie is a social scientist and a lay representative on many medical bodies :o |
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Title: Re: I've just been banned from the OUCH UK board!! Post by ben_uk on Nov 8th, 2005, 10:19am Take a deep breath http://www.newscientist.com/channel/life/dn7931 16:18 31 August 2005 From New Scientist Print Edition Joan Maloof FOR years I have been explaining to the students in my classes that Maryland's Eastern Shore has no old-growth forests left, whatsoever; that this land the early explorers called Arcadia because of its numerous stately trees has been completely altered, and not a single original forest remains. Depending on my mood the day we discuss it, I relate this fact either with anger or with sadness. Last semester, however, I heard rumours that a 20-acre remnant of old-growth forest remained. Twenty acres can barely be called a forest, but still I was anxious to see this unique scrap. So one spring morning when I awoke to a "true blue dream of a sky" I knew right away that this was the day I should visit the "leaping greenly spirit of trees". The forest was more than 60 miles away, and detailed directions were necessary to find it. Even before the car stopped on the isolated dirt road, a sweet, rich, earthy smell filled my senses. I used to think that particular odour was the smell of the mountains, but here I was, still on flat land. Did my own ground once smell like that too - before the grandfather trees were gone, in a time when the trees' breath merged with that of the fungi and the birds and the insects? When we discuss what we miss about forests after they have been cut, we usually mention the sight or the shade or the species; but now I was breathing deeply of a forest gift I had forgotten: the air! Americans largely ignore this dimension of the forest's allure, but the Japanese recognise it and have a name for it: shinrin-yoku - wood-air bathing. Japanese researchers have discovered that when diabetic patients walk through the forest, their blood sugar drops to healthier levels. Entire symposiums have been held on the benefits of wood-air bathing and walking. What could be in forest air that makes us feel better? Researchers working in the Sierra Nevada of California found 120 chemical compounds in the mountain forest air - but they could identify only 70 of them! We are literally breathing things we don't understand. And when we lose our forests, we don't know what we are losing. Some of the compounds in the air come from the bacteria and the fungi in the soil, but most are given off by the trees. Trees release volatile organic compounds from little pockets between their leaf cells. A number of theories exist about why they release the compounds. Possibly it is to deter insects. Or possibly the compounds are just metabolic by-products, and this is how trees eliminate them, having no excretory system. It is not inconceivable that the trees may be altering our perceptions with their chemicals. The volatile molecules evaporate into the air and come into contact with the sensory neurons in our nasal passageways. The olfactory nerves send messages directly to the limbic system in our brains, which deals with instinctive emotions such as sex, memory and aggression. The limbic system can certainly affect our physical bodies, and all of this can happen even without our perception of having "smelled" anything. The molecules from the trees don't just go up our noses, however; they are also part of the air that goes into our lungs, and once in our lungs, some of the molecules can enter our bloodstreams. So when we walk through the forest inhaling that sweet air, the wood air, the forest actually becomes a part of our bodies. No wonder that a forest walk evokes the lines from Rainer Maria Rilke's Ninth Elegy: Earth, my dearest, I will. Oh believe me, no more of your springtimes are needed to win me over - one, ah, a single one, is already too much for my blood. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by ben_uk on Nov 8th, 2005, 10:20am Cont: Aromatherapy practitioners call these plant-produced volatile compounds "essential oils" and depend on handed-down folk wisdom to know the effects these various oils will have on the human body. Among the most abundant compounds given off by trees are monoterpenes. Aromatherapists claim that the monoterpenes in pine are antiviral and antiseptic, good for asthma and respiratory infections, but there is no medical research to back up their claim. There has been a great deal of research, however, on edible monoterpenes, and these have been shown both to prevent and to cure cancer. Many chemotherapy drugs contain monoterpenes, but we can also find them in our own kitchens; lemon rinds, in particular, have large amounts of them. Could inhaling monoterpenes be a cancer cure as well? Is shinrin-yoku a valid therapy? And a bigger question: why hasn't the western medical community been researching the physical effects of inhaling the monoterpenes so abundant in forest air? Might it be because forest air cannot be patented, and consequently no money is to be made from it? We decry the destruction of tropical rainforests, citing the wonder drugs that may eventually be found in them, but we may have miracle medicines lurking right beneath our own noses. Perhaps some day, when our physician asks us to "take a deep breath", it will be old-growth air that he or she is recommending. I hope we don't have to drive too far to find it. My discussion has wandered far from the old-growth forest I visited that clear blue day. It was a beautiful and magical place. I felt healthy and whole while I was there, and for hours afterward. Perhaps my walk even killed that cancer cell that was trying to stablish itself in my breast. Others have said it before, but I'll say it again: perhaps by trying to save the forests we are actually trying to save ourselves. We know, instinctively, that our own health, both physical and spiritual, is a reflection of the health of the Earth - for better or for worse. But we barely have words to discuss this connection, perhaps because we don't yet have all the tools needed to measure it. The strands connecting us are largely invisible. Many people are sensitive to these invisible connections; and those who are most conscious of the living web suffer the most when it is bombed, paved or otherwise disrupted. Biologists are often attracted to the study of living things because we feel these connections. Learning the details about the interactions of the myriad living things on the Earth only deepens our concern for them. Biologists frequently become champions and protectors for the organisms they study: to know them is to love them. And so biologists, like poets, have a special role to play in helping us stay aware of the connections - and a special obligation to speak out when the web of life is abused and disrupted. Joan Maloof is assistant professor of biology at Salisbury University in Maryland. This essay is extracted from her new book Teaching the Trees: Lessons from the forest (University of Georgia Press, 2005). :o |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Langa on Nov 8th, 2005, 10:35am Here’s my story: Episodic for 26 years. I always had a cycle of 6-8 weeks every summer starting June. That is until my last cycle in June 2004 which went on for 10 months. It was the possibility of me becoming chronic was enough to have me look to alternative treatment. I first dosed with Philosopher’s stones in January 2004. By this time I had already weaned off of the Depakote I was on (which I believe to this day extended my cycle as it was the only cycle in my 26 year history when I tried a preventative) and only used 02 and Imitrex injections which I used only when the clusters got bad enough because I hated the side effects. After dosing with the stones, I had 3 wonderful PF weeks – the only break in 6 months. The next dose was on Hawaiian cubensis. What I noticed about the Hawaiian cubensis as opposed to the stones is that I got hit during the dosing and I had to make it in tea or I would suffer severe nausea – a small price to pay, in my opinion, to be medicine and pain-free. Once the initial side effects subsided, I got anywhere from 4-8 days PF between dosing. Prior to that I was getting hit between 4-8 times a day. Before going higher on the dose, I spoke to Clusterbusters and we decided to have me try the LSA seeds instead – this was around mid-April 2005. The fact that they were legal was another reason to try them. I remember laughing when I first saw them. They looked like dried up capers and I remember thinking there is no way this would work and to start with 2 seeds to me seemed like such a small dose for it to do anything. In either case, I decided to try them. I cracked the outer shell, smashed the inner seed and put in water as I was instructed, let it sit for 2 hours and then drank the green slime. I sat back waiting for the nausea or the hit or whatever initial side-effects I would suffer before feeling PF again. Six hours after dosing I got a level 8 cluster that I aborted with 02 and then I shadowed for 2 days after but no hits. A week later I re-dosed and experienced some light shadowing, no hits this time and I mean NO hits or shadowing until Mid-August when I started to shadow heavy again. By the time I received the LSA seeds that I had to re-order as the ones I had leftover went bad (I kept them in a place that was too humid), I was already starting to have 2-3 low level clusters a day. The same day I got the seeds in the mail and before I dosed I got hit with a kip8. After dosing (the same recipe as before) the shadows and hits stopped and I’ve had no hits or shadowing since. I’ve been doing maintenance doses every month. For me, the alternative treatment is the only way I’ll go. I don't have to tell you how wonderful it is to take a nap and eat a meal and just plain sleep without the constant dread and fear of a hit. My advice is don’t give up trying to find ways to be PF and regain your life back. Wishing you all PFDAN's. Hugs, Langa |
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Title: Re: I've just been banned from the OUCH UK board!! Post by fubar on Nov 8th, 2005, 10:51am I want to thank Craig for his efforts. Sadly, it is probably a lost cause trying to get the puritans to ease up on their posting policy. I say this because I was finally given the answer we have all been screaming for and it came in a private message from one of the trustees. Much like the crusades, when innocent people were tortured to death in order to purify their souls in the name of God, these trustees think they are doing 'the right thing' and are completely unwilling to consider the alternatives. If I get permission (i doubt it) I will post the entire email from the trustee, but I can assure you, it's the same old song and it cannot be defended in an open and honest debate, hence the extreme desire of the group to avoid any public discussion at all, even to the point of I did respond, however, and this was my response: -clip- Shrooms are probably even more illegal (if that makes sense) here. Until recently, you could even buy them on High Street in the UK. That never was the case here in the US. I read your excuses and I understand that it is extremely unlikely that you'll ever change your views or the policy of OUCH UK. It sounds to me like you see this as black and white, meaning either it's taboo or it's full-on discussion, including OUCH UK actually endorsing the treatment. You know perfectly well that is not the case. You cling to your unfounded fears by rooting them in a falsehood, namely that there is no happy middle ground. Furthermore, you actually punish those who dare to mention the dreaded fungus, even when it was perfectly legal. How is this different from the seeds discussion? If I was to try and discuss something else that was perfectly legal (say, antihistamines for example) as a possible treatment that seems to have worked, would I be banned? Of course not. This is purely a puritanical move on your part and the justifications you give are weak and unfounded. It's a question of degrees, I guess, and you are only talking about extremes. Are you telling me that if you put up a big disclaimer (e.g. "We do not endorse this particular treatment, and it is illegal so you will be arrested if you try it, but in the interest of full-disclosure and research, we think it is important to acknowledge that there are alternative treatments being explored around the planet, and here is a link to a site that discusses them") or some such nonsense... that your charitable status would be put in danger? Sorry ----, you know that's not the case. I'm sure I could ask a solicitor something like "If OUCH UK endorsed shrooms, would we get in trouble?" and get the answer that you want, namely that it would be dangerous. I'm sure you have not asked about the 'middle ground' because if you had, you would be operating like the tens of other sites based in the UK that do allow such discussions, within reason. I stand by my accusation that you are doing an extreme disservice to a number of CH sufferers. That being said, I am thankful that you at least help some of the CH sufferers as much as you are willing. I can't help but feel angry, however, knowing that it is very likely that you are personally responsible for extended suffering by even a few people. Doesn't that weigh on your mind at all? -clip- reposted |
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Title: Re: I've just been banned from the OUCH UK board!! Post by KingOfPain on Nov 8th, 2005, 10:58am http://fs6.deviantart.com/i/2005/064/c/0/Beating_A_Dead_Horse_by_livius.gif |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jeepgun on Nov 8th, 2005, 11:03am (Donning HAZMAT suit and pulling along a firehose... Hosing all of the horse guts and bits of flesh off of the walls and ceiling, until the whole room is sparkling and pristine again... Dragging a fresh horse corpse to the middle of the tile floor) We now return you to your regularly scheduled flogging. :) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by karma on Nov 8th, 2005, 11:08am Just being able to make a comment like that about this subject is something you CAN"T do at OUCHUK Nice isn't it! Sadly some may never be able to enjoy your freedom. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Wendy on Nov 8th, 2005, 11:18am This is a question to Flash and the only reason I am posting it is someone else might have this question also. I am chronic and have had some success with the seeds. But needed to mantience dose more often I learned soon enough. My question is I am considering trying the shrooms but I have had a new problem start to happen I am now getting hit soon after being hit with a cluster. A "M" headaches too! SUCKS! Anyway I am not asking if it will work for those but I AM asking if I need meds for those will being on them interfer with the shrooms process? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Wendy on Nov 8th, 2005, 11:33am testing |
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Title: Re: I've just been banned from the OUCH UK board!! Post by thomas on Nov 8th, 2005, 11:37am on 11/08/05 at 11:08:06, karma wrote:
Please let's not forget, this is NOT the OUCH US site. So comparing this site to OUCH UK is totally irrelavant. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by fubar on Nov 8th, 2005, 11:38am Call it beating a dead horse... it's still wrong. Besides, this is apparantly the only place where anybody is allowed to take them to task for the injustice they are perpetrating on CH sufferers in the UK. God forbid they discuss it like adults on their own site. PATHETIC. "...quiet desperation is the English way" The more I learn, the more disgusted I am with the people who think they are so rightous for doing such 'charitable' work. Sorry folks, this thread is worth 100 pages if it can budge their stodgy asses off their thrones. They have no right to decide what treatments CH sufferers learn about. They don't have to endorse it, in fact they can talk shit about it for all I care... just TALK ABOUT IT. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by LeeS on Nov 8th, 2005, 12:03pm OK - sorry, long post to add to all of this flogging, but Flash did ask for it. My episodic cluster headaches started in 1999 and I became chronic a couple of years ago. It took me about six months of deliberation and research before I actually decided to attempt to get a positive grip on this illness and I have not stopped researching ever since. The thing that tipped the boat for me was actually meeting another sufferer who had successfully used psilocybin as an alternative treatment in the past (thanks Fubar, that's you – and good to see your support here – but go steady!). The only thing I regret is waiting until I was chronic before embarking on the alternative treatment. Prior to dosing, I was successfully aborting my headaches using sumatriptan jabs, nasal sprays (plus a couple of other triptans – not concurrently) and O2. My Neurologist prescribed verapamil as a preventative, but due to a number of reasons, I didn’t ever take it. The pattern of my attacks immediately before the psilocybin treatment was an average of two per day, classically mid-afternoon and a wake-me-up attack about an hour and a half after going to sleep in the evening. Prior to that it was almost as if I was ‘episodically chronic’, inasmuch as although I often had remission periods of up to 10 days, there were periods that stretched up to weeks where I could have up to five attacks a day. My first psilocybin dose was taken at end of June 2004 and since then I have taken a total of 24 doses of psilocybe mushrooms (various strains), varying in dosage of between 0.5g and 2.0g equivalent dried weight, averaging just over 1g per dose overall. All doses were taken in tea and these low doses varied in trip level from between 3 (maybe a bit more) and 1 (maybe a bit less) and despite my initial anxiety, the side effects were more than manageable. The average time between each dose was 14 days and has varied from between 3 and 73 days. The efficacy following each dose was somewhat erratic, but the general pattern was that shortly after each dose there was an increase in the number attacks, followed by a few days completely pain free, and then things would start ramping up again until the next dose. The time between dosing, however, has increased over time. As I said earlier, prior to dosing I was experiencing an average of two attacks per day. Prior to changing my dosing strategy (to LSA seeds) because of our government’s intervention, I had a total of 277 completely pain free days out of a total of 421 days i.e. 66%. I still had over 150 attacks over this period, but none of these went over a Kip 6 and I haven’t used sumatriptan as an abortive since dosing. This year I still get hit but I have now regained my episodic status, and only two attacks this year have reached a Kip 4, the remainder just Kip 3 or less. I can now drink alcohol (moderately) without any due cause for concern. I did managed to stretch out my dosing period to three months or so apart, but things began to ramp up again a few months back. Because of the new UK laws in respect of mushrooms, coupled with recent anecdotal successes from clusterbusters and elsewhere, I am now dosing with LSA containing seeds as a preventative. To date, I have had just three doses of Rivea Corymbosa seeds (10 seeds first dose then 15 seeds subsequently) all with no side-effects whatsoever (and both well below trip level 1). Since dosing with LSA I have been PF for 63 days in total (76%) and when I do get hit, this hasn’t been over a Kip 3 and never been more than one hit a day (that night time one still gets me now and then). If you’ve managed to get this far, I must say that the sad thing for me is that ever since I joined CH.com as a member I felt the necessity to use a pseudonym here so that I do not unnecessarily upset fellow members at OUCH (UK) after having decided to go down the alternative route. This is one of the reasons that I have joined this (huge!) thread so late, and although almost everyone over the other side of the pond knows who I am when posting over here, it truly is a sad state of affairs. I cannot condone the ‘bashing’ of OUCH (UK) because when I was first diagnosed with CH they were my new lifeline and gave me much needed help and support – and hopefully since then I have done my best to reciprocate. I have developed truly great relationships with many sufferers and supporters over there, including (I hope) most of the Trustees; but for the sake of advancement, I think something should change in this particular respect, and very soon. BTW, to say this treatment has changed my life is an understatement. ATB -Lee/Peter |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 8th, 2005, 12:11pm on 11/08/05 at 11:18:45, Wendy wrote:
Wendy - we need more information from you before we can reply to this. Please provide full background details. Perhaps also best to start a new thread. Place it in the "Medications, Treatments, and Therapies Forum", and entitle it "Help With Clusterbusters Treatment". |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Margi on Nov 8th, 2005, 12:11pm I have big respect for everyone posting to this thread and can certainly see both sides of the issue here. As an OUCH official myself, I've done some research into this and have found that there are, indeed, much stiffer governing rules over internet content in the UK than here in North America. It's not only the websites that risk fines and closure, it's also the ISP's that have the same exposure. As providers, THEY are the ones that impose and must enforce the guidelines. Here are just a couple samplings of European ISP agreements that all hosts and webmasters must agree to: 7.3 We are entitled to terminate your account if you commit a material breach of these terms or for a breach of our Acceptable Use Policy. We reserve the right entirely at our discretion to suspend your 1066ad.com Ltd account rather than terminating it. We also reserve the right to suspend your account if required to do so by the government, the police or other administrative, military or intelligence authority (irrespective of whether such authority is entitled to require us to do so). Unlawful behaviour 10. You must not use your 1066ad.com Ltd account for illegal or unlawful purposes. In particular you must not do anything, which may be obscene, defamatory, cause offence, constitute an illegal threat or harassment or breach any third party intellectual property rights. You must also not use your account in order to gain or attempt to gain unauthorised access to any computer system including ours nor for any other illegal purpose. " I'm sure this is pretty standard international ISP jargon and I have no idea who OUCH UK's ISP is. However, from what i've learned, these policies are policed and enforced much more agressively in the UK than over here. Folks, OUCH UK's stance on this isn't new. They've taken the position that they would rather maintain a cluster website service for sufferers and keep it alive by remaining on the right side of their local governing laws. They've chosen not to risk losing it all (and therefore providing nothing to sufferers) by flirting with the possibility of breaching their agreement with their ISP. Would you rather there wasn't an OUCH UK at all? Flash and Bob are right - Clusterbusters IS already an international site and DOES appear in many international search engines. I honestly can't believe that any cluster sufferer (regardless of nationality) wouldn't OFF THE RECORD direct a fellow sufferer to all available treatment options. Yep, even UK sufferers. Yep, even OUCH UK officials. Maybe even through email or on the phone or maybe even face to face, quietly. Frank's right. This horse is dead. This is what it is, and it isn't going to change. Both sides to this argument can co-exist peacefully. It just requires an offering of mutual respect - THAT's what's missing here. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by fubar on Nov 8th, 2005, 12:13pm Peter, WOW!!! I am so impressed with your success. Thank you so much for your post. I'm pleased to have played a part in helping you find some real help. THIS is exactly why there should be some reasonable change the OUCH UK, by hook or crook. WRT your comment on me taking it a little easier... I agree I can be a little over the top, but it really seems to me (tell me if I'm wrong) that this is the only way to get the discussion going. Every other time we bring it up, it gets successfully swept under the carpet for another year or so, and that means more suffering. This is a travesty that I feel compelled to be noisy about, and I'm sorry if I offend reasonable people like yourself. Really, I am. But not sorry enough to stop until somebody pulls their head out from the 'dark place'. -Shawn |
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Title: Re: I've just been banned from the OUCH UK board!! Post by fubar on Nov 8th, 2005, 12:21pm Margi, I have tremendous respect for people, like yourself, who go out of their way to help others. I don't buy the law enforcement argument because there are many sites that manage quite well in the UK without running afoul of the law. What you have done is take the most conservative stance and made it your own law. It's true, you won't change, but it's also true that it is wrong. Sorry to be a thorn. Please prove me wrong here. Show me a law that would prevent you from simply linking to the CB site, maybe even with a heavy disclaimer. It doesn't exist, and you would not be putting anything at risk... but it ain't going to happen. Why? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 8th, 2005, 12:26pm Margi, Your post is almost verbatum what I received in an email from MOB 2 years ago! So I'm guessing that you've been in contact with them? "7.3 We are entitled to terminate your account if you commit a material breach of these terms or for a breach of our Acceptable Use Policy. We reserve the right entirely at our discretion to suspend your 1066ad.com Ltd account rather than terminating it. We also reserve the right to suspend your account if required to do so by the government, the police or other administrative, military or intelligence authority (irrespective of whether such authority is entitled to require us to do so)." This is standard stuff and your US ISPs have pretty much the same wording. "Unlawful behaviour 10. You must not use your 1066ad.com Ltd account for illegal or unlawful purposes. In particular you must not do anything, which may be obscene, defamatory, cause offence, constitute an illegal threat or harassment or breach any third party intellectual property rights. You must also not use your account in order to gain or attempt to gain unauthorised access to any computer system including ours nor for any other illegal purpose. " Nothing we are asking OUCH (UK) to do is even remotely illegal or unlawful. If talking about mushrooms was unlawful then both The Guardian and New Scientist would have been in court by now. It's not like we're suggesting they sell the shrooms LMAO! I can also ensure you that contrary to what you have been led to believe these are no more stringently enforced in the UK than in the US. But thank you for inadventantly regurgitating their bullshit excuse. Another part of the story I got from MOB was that Ebay in france got into trouble because someone advertised Nazi war memeroblia for sale. Ummm... While I can see why they might be woried about the Nazi angle, but I don't see what that has to do with Clusterbusters! |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Margi on Nov 8th, 2005, 12:48pm Actually, Flash, I have been in contact with MOB - I wrote to him so that I could understand both sides of this issue. However, I just this morning typed into my browser "UK ISP regulations" and was able to quote the above stuff directly from that search. I didn't get them from MOB. I can't find the link again now (trust me, I've tried) but I did read about a UK ISP getting fined for allowing one of its clients to hold open discussions about legalizing marijuana. It wasn't a recent case though (I think it was dated mid 1990's?), so I honestly have no idea how relevant it was to this discussion (thus the reason why I didn't put it in my other post). The ISP in question did shut that website down. For what it's worth, Craig - I do agree with you on the aspect of illegality extremes on the internet. Nazism or child porn - THOSE subjects need to be governed. I honestly don't feel that contraband that can alleviate suffering should EVER be put in the same class. And, Shawn you said: "Show me a law that would prevent you from simply linking to the CB site, maybe even with a heavy disclaimer" ... I can't. And I do. And you're right, I am Conservative. And I'm a peacemaker too. That's honestly all I'm trying to do here. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 8th, 2005, 12:52pm on 11/08/05 at 12:11:41, Margi wrote:
Margi - OUCH (UK) is not just a cluster website. To quote myself from an earlier post: on 11/08/05 at 12:11:41]The big problem here is that not everyone who is in contact with OUCH UK is on-line. The Internet has less penetration among UK society than it does in the US. OUCH UK is not just an on-line society like CH.com. Another problem is that OUCH UK is considered to be the official voice for CH sufferers in the UK. They carry more sway with the doctors, policy makers, and drug companies than the individual sufferers do. So when I lobby my MP for dispensation on mushrooms being made illegal... OUCH UK may well end up being consulted by the policy makers. Now hopefully you see the problem. If OUCH UK deny that they have ever heard of the Cluster Buster treatment, or state that they consider it to be dangerous, harmful, of little merit, or even just a vicious Internet rumour being propegated by junkie scum... then CH sufferers in the UK are up shit creek without a paddle. There are several other CH websites in the UK that do not mention Cluster Buster treatments, and some even forbid discussion on them. But those are independent efforts not 'official' ones, so yes those are entitled to play by their own rules. But OUCH UK is the offician spokesman, it must act fairly and must be held accountable.[/QUOTE, Flash wrote:
OUCH (UK) have a real problem with this Margi, which is why some of the UK people that are using the CH treatment are under assumed names. Two years ago, I too was informed by two officials from OUCH (UK) ,that they secretly pass the shroom information under the table... like the French resistance or something. Unfortunately I have since learned that this was not entirely true. And was more than likely just a ploy to keep me sweet. And even if there was any truth to it, who are they to decide who gets this information and who doesn't. Some of the sufferers have been too intimidated to pass on the information themselves in case they are found out. on 11/08/05 at 12:11:41, Margi wrote:
No Margi the horse is most certainly not dead. The horse is this thread, and while that lives, so does the horse! Last time we put some pressure on them, they got round the table with BobW, and permitted discussion of shrooms on their public forum. They also posted details about what was taking palce at Harvard in that same forum. However the forbid their members to post to that forum LOL - seriously! But at least it was a start. Then during the whole shroom law thing they just sat on their hands. They actually had it within their power to make a good argument for special dispensation, because the government was undergoing a consultation process. Instead they did nothing. As soon as the law was passed they shut down the public forum and deleted the information. This is despite the fact that the law concerned possession of shrooms and there's nothing there that forbids us from talking about them. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by vig on Nov 8th, 2005, 12:56pm on 11/08/05 at 12:11:41, Margi wrote:
nope, this horse aint dead yet.... |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 8th, 2005, 12:59pm Margi, I know you are just trying to make peace. We were just cross posting :) I'd like to see the details of the ISP being prosecuted for discussions on MJ. I suspect there was more to it, like perhaps selling MJ seeds? It is not illegal to discuss legalising MJ in the UK. Flash |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pattik on Nov 8th, 2005, 12:59pm on 11/08/05 at 12:48:49, Margi wrote:
There's nothing wrong with being a conservative. And I too am against Nazism and ALL porn, but I firmly believe in total free speech on the Internet, including the right to publish porn and Nazism. Sorry, that's the yank in me. ::) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Margi on Nov 8th, 2005, 1:01pm Like I said earlier, Flash - I honestly do see both sides of this issue. And both sides sadden me, for different reasons. I just hope that the existence of this thread doesn't end up backfiring and undermining the real purpose - which is ultimately getting the message out to the sufferer. When as issue such as this becomes personal, both sides lose. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Margi on Nov 8th, 2005, 1:05pm on 11/08/05 at 12:59:04, Flash wrote:
Could very well have been contained on that site. Once I saw the date on it, I closed the link and didn't read any further. The case was just mentioned as "one of the ones" that this particular ISP stepped on for breaching their agreement. I suspect it truly was nothing more than the ISP getting greasy and flexing its muscle by threatening future clients to be good little doobies (you should pardon the pun). I gotta get back to work here. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by fubar on Nov 8th, 2005, 1:10pm Margi, You can be a conservative with compassion... it's the new thing, didn't ya know? How many times has OUCH UK successfully killed this horse? I say HORSE ZOMBIES FOREVER! Vive la revolution!! Seriously, even a conservative (I am a card-carrying member, btw) can understand the difference between advocating and endorsing an illegal treatment versus simply making people aware of the treatment alternatives. And, there still is the little problem of the punishment that OUCH UK inflicts on those who dare to (even by accident) mention a taboo topic. Is that required by law too? Show me. I'm sure MOB, Mike, yourself and others would love for this horse to be dead, as has been proclaimed several times, but it is not. More cowbell! |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 8th, 2005, 1:18pm So can anyone please advise me on the CH status of the people that are blocking this decision over at OUCH (UK)? Are they chronic, episodic, or do they not in fact suffer from CH at all, but are just a bunch of random people that appointed themselves in charge of us? Any insight would be appreciated. See I cannot believe that anyone that suffers from CH would withold this treatment regardless of their personal opinions stand in the way??? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Margi on Nov 8th, 2005, 1:24pm on 11/08/05 at 13:10:01, fubar wrote:
Shawn, I do have compassion. Precisely why this issue and this thread upsets me so much. I have compassion for BOTH sides here. And, I can't and don't speak for MOB. But Mike and I most certainly are NOT anti-shroom at all, I'm quite insulted by your comment, in fact. Next time you think that, please click this: http://www.clusterheadaches.ca/DesktopDefault.aspx?tabid=80 And before you suggest that I don't have my priorities straight, the links are organized alphabetically. And then, while you're still thinking that I want the shroom horse dead, click this Shawn: http://www.clusterheadaches.ca/cgi-bin/yabb/YaBB.pl?board=Failures;action=display;num=1114045933 Read ALL of my responses in that thread, would you? I, for one, realize that this issue won't be resolved by this thread. So I am going to stop trying. Finally, Flash, I have to say this - thank you for your pioneering and eternal efforts in helping cluster sufferers. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Pinkfloyd on Nov 8th, 2005, 1:24pm Just for informational purposes, there are UK sites, on UK ISPs, that not only discuss magic mushrooms and psychedelic seeds, but SELL grow kits and spores. Anyone interested, please copy and save my post here in case DJ ever takes down this thread.... I will personally pay ANY fines levied against OUCH UK by it's ISP should it EVER be fined for discussing the medical use of magic mushrooms for treating cluster headaches. Should their ISP ever shut down their site for discussing the medical use of magic mushrooms or psychedelic seeds to treat cluster headaches, I will personally pay all costs involved in switching to a new ISP, including all webmaster charges, plus pay the first year's costs for the new ISP. If they are at any point fined and ordered to stop any further discussions pertaining to the medical use of psychedelics of any kind for treating cluster headaches, I will personally pay the fine. If they start selling them (mushrooms) online, they're on their own. ;) BobW |
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Title: Re: I've just been banned from the OUCH UK board!! Post by LeeS on Nov 8th, 2005, 1:26pm on 11/08/05 at 12:13:08, fubar wrote:
WOW indeed Shawn!! Imagine what it has been like for me not being able to preach my own practice. It's probably my own fault for being too 'conservative'. I do hope this does get the discussion going (and I can report that discussions are developing quite well over the pond in respect of LSA - although unless you are a member you will not be able to follow it) and I still believe that we can solve this issue in a respectable manner. Let me know when you're next over - I'll by you a Guinness or two. ATB Peter |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jeepgun on Nov 8th, 2005, 1:26pm on 11/08/05 at 13:10:01, fubar wrote:
Oh sure... Drag defenseless cattle into it, why don't you? ;;D If we could get some clergy in on the action, maybe we could bash the bishop? [smiley=laugh.gif] |
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Title: Re: I've just been banned from the OUCH UK board!! Post by LeeS on Nov 8th, 2005, 1:28pm WOW Bob! ;) -Lee |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 8th, 2005, 2:10pm on 11/08/05 at 13:24:53, Pinkfloyd wrote:
I'll even eat the dead horse if that ever comes to pass. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by MJ on Nov 8th, 2005, 2:20pm ALL The thread has become too long!!! I say this not because I disagree in any way but simply because I and many others only have a dial up connection available. 7 minutes was the time it took to bring up a reply post as the whole thread is loaded when doing so. Some will lose interest at that speed and voices will be lost. I think it is important to keep this alive as well. I find it very sad that anyone would want to silence a well documented treatment that works for many of the worst CH cases we know of. Legal or not who among us has'nt tried an ALTERNATE therapy of some kind wether it be aspirin or LSD or simply knocking your head against a wall Oxygen has no value in my treatment yet I dont try to downgrade it. Virtually all of the doctor prescribed meds do nothing for me yet I hear they work for many. And through postings and experience I have become fairly knowledgable of them. Many meds I sincerely believe increase the pain and frequency, but others dont. Many other treatments sound like hogwash to me but they work for others. My treatment is seldom agreed to be workable by others. But often considered a maybe by those with a scientific knowledge. Not only should we be aware of possibilities in the treatment of CH but I would say that we MUST be aware to all possibilities if even only one can be helped. All voices should be heard Any authority that intentionally refuses to at the least acknowledge all options should not be seen as an authority and should then be found out and dropped by the wayside as an also ran. If indeed the much mentioned doctor is here or in any way allowing his name involved in the censorship at ouch/uk then his respectability shall wane as well. I fully understand that he or others cannot ethically and possibly legally personally support the HALLUCINOGENIC TREATMENTS of CLUSTER HEADACHE but it should again at least have notable mention at any site that claims to be there for you and I as a potential alternate for some. To bury this thread would be a greater crime. MJ |
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Title: Re: I've just been banned from the OUCH UK board!! Post by MJ on Nov 8th, 2005, 2:27pm ALL The thread has become too long!!! I say this not because I disagree in any way but simply because I and many others only have a dial up connection available. 7 minutes was the time it took to bring up a reply post as the whole thread is loaded when doing so. Some will lose interest at that speed and voices will be lost. I think it is important to keep this alive as well. I find it very sad that anyone would want to silence a well documented treatment that works for many of the worst CH cases we know of. Legal or not who among us has'nt tried an ALTERNATE therapy of some kind wether it be aspirin or LSD or simply knocking your head against a wall Oxygen has no value in my treatment yet I dont try to downgrade it. Virtually all of the doctor prescribed meds do nothing for me yet I hear they work for many. And through postings and experience I have become fairly knowledgable of them. Many meds I sincerely believe increase the pain and frequency, but others dont. Many other treatments sound like hogwash to me but they work for others. My treatment is seldom agreed to be workable by others. But often considered a maybe by those with a scientific knowledge. Not only should we be aware of possibilities in the treatment of CH but I would say that we MUST be aware to all possibilities if even only one can be helped. All voices should be heard Any authority that intentionally refuses to at the least acknowledge all options should not be seen as an authority and should then be found out and dropped by the wayside as an also ran. If indeed the much mentioned doctor is here or in any way allowing his name involved in the censorship at ouch/uk then his respectability shall wane as well. I fully understand that he or others cannot ethically and possibly legally personally support the HALLUCINOGENIC TREATMENTS of CLUSTER HEADACHE but it should again at least have notable mention at any site that claims to be there for you and I as a potential alternate for some. To bury this thread would be a greater crime. MJ |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Chuffy on Nov 8th, 2005, 2:34pm on 11/08/05 at 13:18:31, Flash wrote:
It was this exact sentiment that inspired/drove me to write my original, now deleted post on OUCH(UK) and then start this thread here. And yes, WOW Bob. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 8th, 2005, 7:56pm So... the OUCH (UK) Board of Trustees again. Please could someone advise us who they are, which of them suffer from CH, and whether those are episodic or chronic cases. Who they are is after all meant to be a matter of public record, only the records have not been kept up to date. The way I see it is that the silence is pretty damning right now. And don't come out with that invasion of privacy bullshit because, whether the trustees of an official charity / support group, actually suffer from the condition themselves, is completely within the scope of public interest. This is especially true if said individuals are witholding information on a promising treatment. This is no different from wanting to know whether the Home Secretary is a child abuser who is taking bribes from the porn lobby. So - hello??? Anyone??? This is fairly important stuff! Hello??? |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jonny on Nov 8th, 2005, 8:03pm on 11/08/05 at 19:56:02, Flash wrote:
Why even ask that here?.....except for the Brits that post here how many people do you think post there on a regular basis to know anyone? Try asking at OUCH.org, maybe they can help. ;;D |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 8th, 2005, 10:13pm on 11/08/05 at 19:56:02, Flash wrote:
Why is this so important to you that you keep posting the question when as Jonny says you are so unlikely to get an answer and probably wouldn't believe the answer you got anyway? Are you saying that their "offence" is worse in your eyes if they are CCH, and then decreases in seriousness from ECH down to supporter or none of the above? If you follow that logic, there are quite a few people here and an awful lot of healthcare professionals who shouldn't be allowed to have any involvement in OUCH. I don't see anyone involved anywhere in the OUCH organisations who has a resume detailing their CH "credentials". Wendy |
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Title: Re: I've just been banned from the OUCH UK board!! Post by ben_uk on Nov 9th, 2005, 12:45am You know, If Hollywood were ever to make a movie about “all this” Think “Lorenzo’s oil” or “Awakenings” Writers would be looking around for someone/group to portray as “the bad guys” Perhaps Brad Pit in the lead role as Flash. Wadyafink? :o |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 9th, 2005, 3:10am on 11/09/05 at 00:45:50, ben_uk wrote:
I fink seeing Flash as a Hollywood hero played by Brad Pitt is a leap of imagination too far for my personal hero worship scale ;;D |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Beastfodder on Nov 9th, 2005, 4:44am It's been fascinating to watch this run and run. I'm a UK episodic that is who's found quality of life through clusterbusters, which I found through this website so that's my colours nailed to the mast. But I'm also a member of OUCH UK and from my dealings with them got have got help and support over both O2, prescription options and re-assurance that off the record the route that I've taken is very much OK but only over the phone. Pretty well documented that Professor Goadsby has two views - on the record and off the record - and given the spurious headlines that can be generated with the topic I can respect that. If the Harvard research pans out I hope that'd he be the first to change his postion on the record. So what can be done to move this on (could even start a separate thread)? If it's a case of OUCH UK needing reassurance to at least link to Clusterbusters is OK what can be done to provide this? 1)Seems to me that an ISP who threatens to turn off a website providing help and assistance to sufferers of the most painful affliction to man is walking into a PR disaster nobody would relish. Could they clarify these terms for the satisfaction of OUCH UK ? 2)Is it a case of poor legal advice received by OUCH UK given the examples posted in this thread and can it be reviewed ? 3) Can we lobby politicians on this? Can we lobby the media to expose this more - 'Fear of prosecution witholds miracle cure ..' 4) Do clusterbusted OUCH UK members need to canvass the next AGM? 5) Do we need a new thread? But the only thing I'd really hate is an OUCH UK camping trip - due to the very high risk of people p*ss*ng in the tents!!!! |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 9th, 2005, 5:17am on 11/08/05 at 22:13:44, pubgirl wrote:
Because I suspect that whoever is/are holding this back does not suffer from CH - which makes it worse in my eyes. There are a lot of people involved in helping and supporting those of us with CH that do not have CH. The vast majority of them do a fantastic job and I'm glad they are around. Their mere presence means that at least some outsiders have an inkling of how nasty CH is and want to help. That's all good. But if one of those people were to turn round and say "No you cannot take X, even though it is the best treatment out there, because I am morally opposed to it", then that shows that person SIMPLY DOES NOT GET IT. Worse still is if such a person - one who rates their personal opinions as being more important than the suffering of others - is in a position to deny that treatment. Worse still if they are self appointed, with no may of removing them from office. That's my problem. We don't need help like that! Cheers - NOT! What if it turns out all those involved do have CH? I'll probably faint with shock. And when I come round the world will seem a very strange place :( So any chance of providing an answer to my question? I'm lying down BTW (am male and have the flu again), so don't worry about me banging my head. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 9th, 2005, 5:25am on 11/09/05 at 00:45:50, ben_uk wrote:
My preference would be Dennis Quaid. Morgan Freeman could be Bob, Tom Selleck could be pinksharkmark, and provide the voiceover. I reckon Lysette Anthony for Wendy. And Joss Ackland for the head of OUCH UK, but only because Lord Olivier is dead. George Wend could play Boob. And Gina Rowlands has enough guts and balls to be convincing as Margi, failing that Sharon Stone. I could and probably will go on... (and on... and on...) |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 9th, 2005, 5:50am on 11/09/05 at 05:17:11, Flash wrote:
Flash Mickey Rourke fits you better in my book ;;D and Lysette Anthony- I think not! (ask Fu) I think it is a very good idea you are lying down as you would hurt yourself when you fainted about the composition of the OUCH Board ;;D but I think you knew that anyway...... Wendy |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 9th, 2005, 5:57am on 11/09/05 at 05:50:42, pubgirl wrote:
Have you seen the state of Mickey these days. That man is not a good advert for the hidden virtues of recreational drugs LMAO! So are you saying categorically that everyone on the OUCH UK board suffers from CH? *stunned silence* |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Flash on Nov 9th, 2005, 6:02am So wait... you're telling us, that there are people out there with CH who are witholding this treatment from each other??? WTF? Do they like having it or something? That's sick! |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 9th, 2005, 6:35am on 11/09/05 at 06:02:00, Flash wrote:
Bloody shame there was no bookie around to take odds on that answer |
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Title: Re: I've just been banned from the OUCH UK board!! Post by DJ on Nov 9th, 2005, 6:36am on 11/09/05 at 06:02:00, Flash wrote:
I think the fact that this discussion has been allowed to carry on so long, unedited, shows ch.com's stance on this subject. As for other organizations around the world, ch.com has nothing to do with them so there's probably not much bitching about them here will do. I think everyone has made their point and it's time to move on... DJ |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pubgirl on Nov 9th, 2005, 7:08am In full agreement DJ, thank you..... for everything Wendy |
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Title: Re: I've just been banned from the OUCH UK board!! Post by pf_again on Nov 9th, 2005, 4:56pm DJ - sorry to not move on quite yet but I have to briefly set the record straight regarding UK law. I cannot do this on the OUCH UK website. This week I have consulted two lawyers (criminal and internet) regarding the discussion of illegal substances on UK websites. Neither could imagine how even the most timid interpretation of the law would conclude that no discussion nor mention of illegal substances is allowed. They both considered that such an interpretation is nonsense. A simple disclaimer would be required. Neither lawyer is aware of any prosecution in the UK under these circumstances. Providing information about illegal substances is not illegal. Discussing experiences with illegal substances is not illegal. Even linking to clusterbusters is not illegal! There is some ambiguity with allowing members to post about illegal substances. Members could relate their own experiences but could not actively incite or encourage illegal activity. Responsible moderating could easily handle this. But information is definitely allowed. This is easily confirmed by taking a few moments to search UK websites. Such as these (the first is actually a Government website). http://www.talktofrank.com http://www.thc4ms.org.uk http://www.erowid.org/general/about/about_disclaimer.shtml http://www.ccguide.org.uk/ns291002.php Hope this helps. |
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Title: Re: I've just been banned from the OUCH UK board!! Post by Jonny on Nov 9th, 2005, 6:03pm on 11/09/05 at 16:56:55, pf_again wrote:
Not as sorry as your going to be!, when he removes this whole thread. on 11/09/05 at 06:36:46, DJ wrote:
The above means....MOVE ON!! What dont you get?....Keep posting and this thread will go *POOF* |
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Title: Re: I've just been banned from the OUCH UK board!! Post by DJ on Nov 10th, 2005, 1:52am on 11/09/05 at 16:56:55, pf_again wrote:
Precisely my point about the difference between any chapter of OUCH and ch.com You may love this place for that reason, you may hate this place for that reason... bottom line is that is what makes this place what it is. Now can we move on? Jesus.... DJ |
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