|
||
|
Title: Clusters and Shrooms in The Guardian newspaper Post by Flash on Aug 2nd, 2005, 2:54am http://society.guardian.co.uk/drugsandalcohol/story/0,8150,1540653,00.html Hope the link works! |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by BikerBob on Aug 2nd, 2005, 3:35am on 08/02/05 at 02:54:05, Flash wrote:
Works for me ;) Thanks. BB |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by Topical on Aug 2nd, 2005, 4:28am Great article. "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. " How are blind trials going to be conducted to convince the medical establishment that it is a viable treatment? He favors testing LSD. Giving micro doses of that without tripping is going to be fairly hard, if not impossible. My point is, will we ever get past being able to rule out a "placebo effect"? |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by Flash on Aug 2nd, 2005, 4:58am Would have helped if you'd accurately quoted what he'd said... Personally, after 12 1/2 years I am very past the whole placebo thing, and I know another 100 or so people that are too. The bottom line is that the message is properly out at last, and people have the means to treat themsleves should they so desire. It's not easy, it takes some commitment, and it's illegal - but the results are worth it. |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by E-Double on Aug 2nd, 2005, 6:07am Quote:
Let him read the reports! Skeptical does not mean against which could be seen as a blow considering he is "the man" The fact that he suggests that a study is "deserved" is positive as well as the fact that he states that essentially people will go to great lengths to alleviate pain.....Doesn't that suggest that any treatment be studied? You guys rule!!! Ex2 |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by Jasmyn on Aug 2nd, 2005, 9:07am Great article, glad the message is out there and that means HOPE! [smiley=thumb.gif] |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by lionsound on Aug 2nd, 2005, 9:10am Excellent article! Thanks, Flash! |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by nani on Aug 2nd, 2005, 9:55am Great article!! Thanks to those who participated. :-* ~nani |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by Flash on Aug 2nd, 2005, 10:18am I think that's as positive as Goadsby could safely be talking to a national newspaper. You have to read between the lines. If he though it was bullshit he would have said so. He can hardly come out 100% in support of the treatment with what little information he has to go on. Also remember that his contact is mainly through OUCH (UK) and shrooms don't even make their list at present. So personally I consider his quoted position to be positive, and I believe we should focus on the positive parts of his quote rather than placebo and natural remission. Remember that he did not have to mention the fact that it was related to ergotame, or say that it was worthy of further investigation. But he did - and that, above all, is what counts. |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by vig on Aug 2nd, 2005, 10:19am On the whole, I think it's a great article... and the quoted part is excellent, it's the veracity of the unquoted part that I'm questioning and I can understand his professional reluctance... but anybody thinking this is a placebo is just wrong.... ;;D |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by pubgirl on Aug 2nd, 2005, 12:20pm on 08/02/05 at 09:48:25, vig wrote:
Vig I'm afraid he has been asked, asked and asked again by many different people in many different ways. I suspect as Flash says that this is as far as he is prepared to go, and truthfully I think it is further than we might have expected. I have never even heard him say he thinks it is worth further investigation before and at least he didn't say what he has said before that he feels there are real dangers involved with people with undiagnosed mental health conditions. Flash is right on another count, if PG thinks something has no value at all, he will say so very clearly. You should hear him on the subject of capsaicin, it's very funny! Wendy |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by Bob P on Aug 2nd, 2005, 3:21pm When I presented him with the preliminary results of fungi 3 or 4 years ago his response was, "Hmmmm, I'll have to take another look at the pharmicology there". Another doctor from Diamond Clinic said it could very well help but "why mess with it when there is a legal version, Sansert." Fact is Halpern & Sewell are the only hope for any legitimization at the moment. Nobody else is going to take a bunch of yahoos tripping on shrooms very seriously. It is, after all, only a headache. |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by Flash on Aug 3rd, 2005, 7:34am on 08/02/05 at 12:20:41, pubgirl wrote:
Wendy - Bob has been trying to contact PG for some time. We'd like to send him copies of our case reports, and give him access to all the same data that the guys at Harvard have. It's not really fair for anyone to put the guy on the spot when he doesn't have much to go on. The data we have is from personal testimony and was not gathered under anything approaching scientific conditions. So while we would not expect anyone to jump off the fence on that basis, several things do stand out. Firstly it's worth mentioning that every clusterbuster has been assigned a case number. We each periodically update our case reports. We keep track of treatments, dosage, and whether we were taking any other medicines. Of course we also provide the results. The stand out things are that: 1) The success rate is much greater than you'd expect to see with a placebo, and in fact significantly greater than you see with any other cluster medication. AND remember this is a bunch of people literally groping around in the dark working with inconsistant doses and infrequent treatments! 2) The treatment works over a much longer term than would typically be expected of a placebo - several years in many cases. 3) Most people embarking on this treatment, especially back in the early days, did not expect it to work and were shocked when it did. This is still true in many cases. 4) Natural remission can pretty much be ruled out due to the sheer scale of the coincidence. 5) The overwhelming majority of clusterbusters now use this as their sole method of treatment, and many of those have been doing so for a long time now. CH is such a painful condition that it is unlikely so many people would choose to suffer ANY treatment that was ineffective. So we would be grateful if you (or anyone that has contact with PG) could persuade him to take us up on our offer. Surely the data itself, from so many CH-ers, over such a long period of time, would be useful to him regardless of the mushroom angle. |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by vig on Aug 3rd, 2005, 8:39am on 08/02/05 at 15:21:00, Bob P wrote:
Just curious... DID he look at the pharmacology after saying that? I think he'd be doing us all a great service by doing that. |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by pubgirl on Aug 3rd, 2005, 8:59am Flash Why don't you just send it to him? His work address is a matter of public knowledge. If you want more than this, tell Bob to ask Mike. He talks to and sees PG regularly. Bob has Mike's email. W |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by Bob P on Aug 3rd, 2005, 9:08am Quote:
I doubt it. The tone I read into the response was more one of a mild blow off. |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by Flash on Aug 3rd, 2005, 9:52am on 08/03/05 at 08:59:44, pubgirl wrote:
No point in sending this unless he's going to look at it. Some dialogue would be nice. Also, assuming he is prepared to look at it then it would be much easier to email, since it's all already in electronic form and runs to a lot of pages. |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by Pinkfloyd on Aug 3rd, 2005, 10:37am on 08/03/05 at 08:59:44, pubgirl wrote:
Hiya Wendy!! ;;D I have already sent him quite a bit of information in the form of a synopsis. Offered him access to all our data and records. Contact info with all the doctors involved if he'd rather deal just through professional ranks. All his responses could be boiled down to...."interesting" We have reams (and I mean reams) of data and reports. I would venture a guess of in excess of 2000 pages. It's also available on cd. This does not include anything already generated at Harvard, which is also substantial. It would be not only presumptuous on our part to send it all to him and ask him to "read this", it would also be counterproductive IMHO, without his asking for specific data. You can lead a horse to water.....blah blah blah... When he's ready, so are we. I think that he may feel that when he makes that request, which he will at some point, he will be "officially" interested and in this case, that carries with it, some baggage. As to his remarks in the article, this is my official response to his official response ;-) The placebo effect is just something we will need to prove inconsequential. Just as with these being spontaneous remissions. We knew all along that those would be the first two bridges to cross with cluster specialists. All the doctors involved and I have been discussing this very subject for two years now in anticipation. I'm sure Prof. Goadsby, if asked under normal circumstances (read: not in the context of magic mushrooms) he would tell you that clusters are one of the very few conditions where placebos are all but non existent. Sort of like a placebo for a broken leg. He knows it's not a problem but it IS one thing that needs to be eliminated as a possible cause. He also knows the numbers we are talking about, but again, these are not "officially" scientifically gathered conclusions (yet). The same is true for spontaneous remissions. Yes, anyone of us could have (and have most likely had) spontaneous remissions, where cycles end (or begin) when we didn't expect it. When 200-300 people experience remissions (of varying lenghts) at very high percentages....it changes the landscape. In "general" headache treatment discussions, placebos can account for 30-50% of positive results with newly studied drugs. Its just the first thing that is asked. We need to be prepared to answer all the same questions that Glaxo is asked, and we are. This is a dance we must continue, and are prepared to finish. One step at a time and knowing which toes we need to step on, and which ones we need to avoid. Flash is correct. Goadsby's statement that this (psychedelics) should be investigated is huge, and far outweighs his stated reservations which is no more than a CYA addendum, IMHO. Bobw P.S. Hope you're well Wendy |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by pubgirl on Aug 3rd, 2005, 6:17pm I'm good Bob, thanks for asking. I don't know where we go from here because as you know, PG has been asked informally and formally on lots of occasions for his opinion. Because of the person he is, his private replies tend to be exactly the same as his public ones i.e. he is honest in his reservations in both. As far as getting him to review your data, I do not have his ear, Mike does as he is closely involved with QS and PG very regularly as their main ONSI subject. I can't speak for him, so suggest you request Mike's help directly. Wendy |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by Flash on Aug 4th, 2005, 3:24am I think maybe you've got this the wrong way round. We have an open offer to PG to provide him with our data. It's his loss if he doesn't take us up on it. After 12 1/2 years with only 2 months of total CH time instead of the anticpated 25 months then I couldn't care less for anyone's opinion on what is going on inside my body... regardless their qualifications. So to make the point absiolutely crystal clear: We are neither seeking PGs opinion or endorsement. Those things have no impact on the PF status of anyone at Clusterbusters. As the foremost expert on CH we would EXPECT him to take a look at our data, because it is something that he should, by all accounts, be interested in. Assuming he really does give a shit. Sorry to be blunt! Flash |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by Pinkfloyd on Aug 4th, 2005, 9:14am on 08/04/05 at 03:24:52, Flash wrote:
Yes, this is true....to a point. To borrow a phrase.....Neither sleet nor rain nor heat of PG shall deter us from our rounds. We will continue to move forward. We do know that PG's endorsement will help bring this to more people, and that is obviously our goal. We won't be waiting on any establishment though. Bobw |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by pubgirl on Aug 4th, 2005, 6:16pm Too funny Flash [smiley=laugh.gif] [smiley=laugh.gif] Your pig headed arrogance always was your weak point and probably your strength. PG gives more of a shit about CH'ers than anyone here will ever know, and don't tell me his opinion doesn't matter to you, because if he supported you, you'd be shouting it from the rooftops. |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by mynm156 on Aug 6th, 2005, 9:26pm WOW!! ITs about time! I am very happy to see a story like that. Hopefully Harvard will have more to add soon. |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by Bob P on Aug 9th, 2005, 1:47pm Hey Craig, my cluster is over. I think the fungi finally kicked in. Kind of a delayed reaction. It's the only possible explaination for the attacks stopping! ;;D |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by tommyD on Aug 9th, 2005, 6:01pm Well, gee Bob, you're right again. You always are. |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by Bob P on Aug 9th, 2005, 6:21pm Thanks Flash |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by Flash on Aug 10th, 2005, 12:05pm on 08/09/05 at 18:21:53, Bob P wrote:
Well Bob I'm about done here anyway. I started posting on this back in July 1999 (I think). Today there are at least 100 people actively using this treatment. According to our various surveys they are experiencing a large measure of success. Word is well and truely out. There are now many people experienced in this treatment, and they are doing a great job of helping and advising others. There's the beginnings of scientific research on the horizon. Lately it even got a mention in the media - both in New Scientist and The Guardian. And there's information all over the internet now, including the Clusterbusters own website which is packed with information. This treatment has a life of it's own now, there's no longer a requirement for me to contribute to this board. Life is too short to visit here and exchange unpleasantness with trolls. I've done my bit. Bye. |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by Bob P on Aug 10th, 2005, 3:27pm Thanks Flash. |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by rextangle on Aug 10th, 2005, 4:13pm FLASH, please come back. You've provided a lot of us some really good info and helped a lot of folks achieve some pain free time. Don't let anybody run you off!!! >:( Amen, Rex |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by Chillrmn1 on Aug 10th, 2005, 4:45pm Hey Flash, If you feel you must resign from this Board I think I can understand why. But before you go, you should know that your advice and the experiences shared by you in regards to the ClusterBuster Treatment has helped me tremendously in relief and treatment for my cluster headache disease. I'm very grateful for that and to you and sure many other sufferers and their supporters feel the same. I felt it important you know this. If you decide to leave, then I wish you the best my friend! Namaste, Bob |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by SteCo on Aug 10th, 2005, 4:57pm on 08/10/05 at 12:05:36, Flash wrote:
You have done your bit and then some. Much appreciated! If this is the final door....so be it, but much to the sadness of the majority. After realizing success with the alt. therapy, too many have been run off after hitting frustrations on the board. But with the knowledge gained from your investigations and theories, these same people have found freedom from the beast. I think I can speak for all the past, present and future alt. therapy users and wish to express a big THANKYOU! for all you have done. SteCo |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by E-Double on Aug 10th, 2005, 6:21pm Ditto all!!!!! Sincerest thanks for all you and the other pioneers have done! PF wishes and continued success. |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by nani on Aug 10th, 2005, 7:08pm on 08/10/05 at 16:45:21, Chillrmn1 wrote:
I second that, Craig. Thank you for all you've done. Spreading the word about this treatment won't stop... and I'm very grateful to be one of the ones to do so. hugs, nani |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by Flounder on Aug 10th, 2005, 8:04pm http://www.clusterbusters.com/cblogo.jpg Long Live The Grandmaster Flash Thanks dude. I'll be seeing you! |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by Kris_in_SJ on Aug 10th, 2005, 8:32pm Just keep educating, Flash ... whether on this board or the Clusterbuster's. It's friends like you that I depend on to see me through the next time around! Hugs, Kris |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by vig on Aug 10th, 2005, 9:13pm I usually just try to say: It's been the most effective medicine with the least amount of side effects I was pretty desperate 2 years ago when I found this site and the first tips I got.... the CH had just about totaled my life... laid off, recently separated, broke, no place to live... delivering pizza... not good not good. I'd been prescribed plenty of the stuff that doesn't help much but makes you a retard, (me anyway) so as I read and found that psilocybin might help, I knew it was worth a try, FOR ME. I got to do it within a few weeks and right away, I knew it was 'hitting the spot'. It even hurt at first, but, as Nani says, my head felt clear. Not just muted like most of the medicine does, but as if it had stopped the condition. Over the next month or so, I did it a few more times and the depression lifted, my memory started coming back, I slowly improved on sleeping. it was fantastic. I won't go back. You can't make me. I just won't. thanks Craig/Flash |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by godsjoy777 on Aug 10th, 2005, 10:02pm Ditto Craig.....This board is the one board that I come to in season and out....and though I haven't yet tried the alternative treatmentm it will most deffinately be my next choice when the beast comes around again....AND....I'll need all the help I can get..... Stick around...we need you! Blessings, Karen |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by rextangle on Aug 11th, 2005, 1:08pm BUMP |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by SteCo on Aug 12th, 2005, 2:14pm This thread deserves another bump! This article is a huge step, which will hopefully lead to many others....... and getting the good word out! |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by rextangle on Aug 12th, 2005, 2:50pm RE-BUMP! ;) |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by Bob P on Aug 15th, 2005, 1:43pm No, really Flash, thank you. |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by tommyD on Aug 15th, 2005, 3:57pm Thanks for the bump, Bob. Oh, and Mrs. Barlow says she doesn't believe you. -tommyD |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by Pegase on Aug 16th, 2005, 10:07am THANKS... really... :) just sorry some just dont seem to appreciate :( Phil |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by LeeS on Aug 18th, 2005, 9:00am "a 41-year-old father of two who asked to be identified only as Lee" LMAO ;) Are you still out there Flash? Well organised mate. -Lee |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by BobG on Aug 18th, 2005, 2:26pm Damn! I feel like I just got kicked in the gut. Flash is leaving? Please say it ain’t so. I can remember when Flash first mentioned an alternative treatment and I admit I was skeptical of it. But as time went on and more and more people tried it and the positive reports started coming in I changed my mind. Now I’m all for it. I have never tried the treatment but if I ever go into a cluster and need help you can bet your butt it will be Flash I want to talk to. Flash, thank you for being here. Thank you for sticking with your advice. It would have been so easy to just give up trying to convince us skeptics. Take a break. Be good to yourself. Please come back and visit. |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by rextangle on Aug 18th, 2005, 3:40pm BUMP |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by Bob P on Aug 18th, 2005, 4:15pm No, really! |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by Jonny on Aug 18th, 2005, 5:50pm positively, absolutely without doubt ;;D |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by Pinkfloyd on Aug 18th, 2005, 8:41pm on 08/18/05 at 16:15:43, Bob P wrote:
"Great spirits have always encountered opposition from mediocre minds. The mediocre mind is incapable of understanding the man who refuses to bow blindly to conventional prejudices and chooses instead to express his opinions courageously and honestly. " ~Albert Einstein |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by Bob P on Aug 19th, 2005, 9:01am Thanks Bob, really. |
||
|
Title: Re: Clusters and Shrooms in The Guardian newspaper Post by rextangle on Aug 19th, 2005, 1:01pm STFU Bob P**** of S*** [smiley=finger.gif] BUMP |
||
|
Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1! YaBB © 2000-2003. All Rights Reserved. |