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Topic: OUCH (UK) (Read 7513 times) |
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Flash
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I know that this previously has been done to death, but there have been a couple of developments that I believe are worth sharing.
First of all I would like to state that I am posting this off my own back and not on behalf of clusterbusters... I felt that this was something that needed to be brought out into the open, and was in the interests of all CH sufferers particularily those based in the UK.
MOB from OUCH (UK) has reported Ben's clustermasx to the MHRA (our Government Medicines and Healthcare products Regulatory Agency) and Ben is now under investigation. I suspect this has got a lot to do with Ben coming out of the closet with regard to clusterbusters.
The masx has been nothing short of a godsend for many CH sufferers, and my understanding is that Ben has been manufacturing them on a time and materials basis. The situation is to put it mildly - disturbing. Why on earth would OUCH (UK) come to the conclusion that it was in the interests of CH sufferers to report Ben to the MHRA???
I believe Mo Graham is set to take over as Chairperson (the person in charge). Mo is a sitting magistrate (the equivalnet of a judge) and has been the chief opponent of the clusterbusters treatment within OUCH (UK).
It should also be noted that the OUCH (UK) board of trustees is self appointed and NOT elected by their membership. In other words a bunch of self appointed people are calling themselves OUCH (UK) and pertaining to be the official mouthpiece for everyone in the UK who suffers from cluster headaches.
I am posting this here on the Worldwide Cluster Headache Support Forum because:
A) OUCH (UK) will not accept my membership.
B) This post would not be tolerated on the OUCH (UK) forum.
C) The OUCH (UK) forum is private and non-members are unable to view it.
D) OUCH (UK) members are forbidden to post on the OUCH (UK) public forum.
OUCH (UK) are permitting some discussion on RC and HBW seeds. This initiated because the BOT were unaware that these seeds were in fact a Clusterbusters treatment. By the time they were alterted discussion was well under way and several people had become PF. At that point some of the seed threads were 'accidentally deleted' and have yet to be resurrected. The BOT then decided that although the seeds themselves are completely legal in the UK (you can legally purchase them), that preparation of the seeds (soaking them in water) amounted to extraction of LSA a substance that is covered by our Misuse of Drugs legislation. Their position is still unclear at this time.
OUCH (UK) has however stated that in the event the law was changed to make the seeds illegal it would not intervene on behalf of cluster headache sufferers, and would also then ban all seed discussion on it's forums. In other words, the official mouthpiece of CH sufferers in the UK would support a change in the law to make the most promising alternative treatment for CH illegal. And then they would take that opportunity to ban all discussion of that treatment. AND THOSE PEOPLE AREN'T EVEN DEMOCRATICALLY ELECTED.
The whole deal about discussing illegal drugs being a risk to their charitable status is completely bogus. I contacted the charities commission and asked them whether (hypothetically) I could register a non-profit making organisation to promote the legalisation of crack cocaine. Answer: YES!
Now perhaps posting this will land me in the shit. Perhaps it will piss a few people off, including perhaps a few of my friends. Most likely it will ignite another war of words. BUT THAT WAR HAS TO BE FOUGHT.
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| « Last Edit: Dec 19th, 2005, 1:49pm by Flash » |
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Flash
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Sorry, just edited my original post to add this:
"The masx has been nothing short of a godsend for many CH sufferers, and my understanding is that Ben has been manufacturing them on a time and materials basis. The situation is to put it mildly - disturbing. Why on earth would OUCH (UK) come to the conclusion that it was in the interests of CH sufferers to report Ben to the MHRA???"
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| « Last Edit: Dec 19th, 2005, 1:48pm by Flash » |
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Flash
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Just for clarification: Ben is the guy that invented the clustermasx. He has been manufacturing it on a time and materials (i.e. cost basis) and supplying it to other clusterheads. The masx works wonders. This is what OUCH (UK) have reported him for, making and supplying a medical device that has not passed clinical trials.
Now while I guess strictly speaking they may legally have a point... I mean WTF? Just how fuckin anal retentive is it OK to be?
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| « Last Edit: Dec 19th, 2005, 1:48pm by Flash » |
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LeLimey
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Re: OUCH (UK)
« Reply #3 on: Dec 19th, 2005, 1:28pm » |
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Hi everyone,
This was posted earlier on at OUCH UK. Hope it helps make things a bit clearer
Take care
Helen
on 1135013498, Mike wrote:Please note this following reply from The MHRA re Clustermasx
Thank you for your letter dated 15 December, a copy of which I received by email this morning.
Your assertion in the second paragraph is incorrect in that MHRA has not directed the manufacturer to cease production or distribution of the above device.
As you are aware, following a letter from one of your colleagues, I can confirm that there is a compliance investigation into the clustermasx device. Like any medical device available in the UK or Europe this device must meet the provisions of the Medical Devices Regulations.
I understand from my colleagues in the regulatory affairs section of this Agency that this investigation is at a very preliminary stage and at the moment there is outstanding correspondence due from the manufacturer of the device. The Competent Authority has not made any decision at this stage as to whether the device is compliant with the regulations.
I have had further conversations with them following the above and they say that by law the mask has to be compliant and the manufacture (Ben Khan) would be prosecuted if this is not the case. The mask should have been sent to them for approval. This is standard practice for any piece of medical equipment. They went on to say that they have not told the manufacturer to cease distribution and the fact that he has done so is entirely his decision.
Frankly I am horrified that the facts have been so distorted by the manufacturer, which in turn has caused major upsets to many of us.
I will keep you informed of further developments.
Mike |
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| « Last Edit: Dec 19th, 2005, 1:32pm by LeLimey » |
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Re: OUCH (UK)
« Reply #4 on: Dec 19th, 2005, 1:33pm » |
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Thanks for the clarification, Helen. Most of us don't have access to these posts, and I'm hoping Ben will be allowed to continue helping us all who need and want his masx.
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Flash
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Please lets not forget that the 'manufacturer is just a CH sufferer sitting in his bedroom knocking these things up for our relief. He probably wasn't even aware of the MHRA and their compliance regulations (hands up all those that were). So yes OUCH (UK) and especially MOB, well done technically your are CORRECT! But that doesn't make what you have done right.
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Linda_Howell
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Re: OUCH (UK)
« Reply #6 on: Dec 19th, 2005, 1:47pm » |
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NO, it certainly does NOT make it right. At all.
While I admit to not knowing anything regarding the law here, I have to question the motivation and character of someone who "turns in" someone trying to help our situation as Ben has. Sad state of affairs that makes one just give up believing in PEOPLE. 
Linda
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Flash
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This would be bad enough if it were an individual acting alone that had reported Ben to the authorities. But when that individual is acting on behalf of an organisation that pertains to be helping clusterheads... well that's just plain inexcusable.
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seasonalboomer
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Re: OUCH (UK)
« Reply #8 on: Dec 19th, 2005, 2:11pm » |
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that's just freakin' sad. 
what a pitiful state of affairs.
scott
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Re: OUCH (UK)
« Reply #9 on: Dec 19th, 2005, 2:31pm » |
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Hey Flash,
Since you managed to get yourself banned from the site I assume you are giving us this information second hand (and perhaps with your own little spin)?
The OUCH UK board has a special section for alternative treatments which has many LSA posts. There are also a couple of LSA threads in the Treatments section.
From the OUCH UK message board:
Quote:At our recent Trustee meeting we had a full discussion about whether or not we should link to Ben’s Clustermasx site. We appreciate that the anecdotal evidence from those using the mask suggests that it aborts cluster attacks much quicker than any other mask currently on the market. However, our problem has always been that this mask has not yet undergone any formal Study as to its efficacy or (equally important) as to its safety in respect of its use for any oxygen therapy, not just for CH. The fact remains that until such a Study is carried out, Ben’s mask remains an unlicensed piece of medical equipment. It therefore cannot legally be sold in the UK or purchased via oxygen suppliers, through pharmacies or given out on NHS prescriptions.
We have had no issue with the mask being discussed on the message board where personal experiences are shared. All we’ve ever asked is that it isn’t ‘sold’ as an officially OUCH UK endorsed piece of medical equipment whilst it remains unlicensed (and therefore illegal) to do so. Rightly or wrongly we felt that by allowing the clustermasx link to be put up on the message board so people could go straight to it to purchase a mask, this would imply that we were officially endorsing it.
But in view of your strong feelings on the subject, we voted on the 19th to change our mind about blocking any mention of - or link to – the clustermasx site in the future. We agreed we would put in place a method that would clearly indemnify us as regards OUCH UK endorsing the mask, but which would at the same time meet your request to link people over to Ben’s site.
So in future, whenever the clustermasx link is typed in it will change to a Disclaimer page from OUCH UK. The clustermasx link will appear at the bottom of this Disclaimer page, and just another click will take people direct to the mask site for them to read more about it/decide to buy one if they so wish. This will satisfy our concerns, we hope it will satisfy yours as well.
Chris Willis
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| « Last Edit: Dec 19th, 2005, 2:53pm by Bob P » |
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Margi
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Re: OUCH (UK)
« Reply #10 on: Dec 19th, 2005, 3:04pm » |
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Just my two cents, which I'm sure are unwelcomed but...too friggin bad. Respectfully, Flash - and I mean that - I have to disagree with your position on this.
Medicines Healthcare Products Regulatory Agency. Um, maybe I'm taking this wrong, but isn't OUCH U.K. supposed to ensure safety of products used by cluster patients? Isn't that their job? To act as advocate for their users?
I know Ben's mask is getting rave reviews and I personally will be ordering one for Mike before his next cycle.
But what if one person, just one person smothered as a result of using Ben's mask? Wouldn't the public then have the right to scream that OUCH U.K. was liable for recommending this mask? You bet your ass they would!
I've been following the thread at OUCH UK too and I can't see where they've acted incorrectly. Yes, they have talked to the governing authority, the MHRP, about the mask - with the intent and attempt to someday BE able to promote it. How does that equate to "turning Ben in"? In my opinion, they're trying to help him get it approved for public use.
Doesn't EVERY product we buy have to be tested for safety? Especially if a patient advocacy group is going to recommend it to its users?
Let's not make a mountain out of a molehill here, people. Bureaucracy is what it is - it has its merits and its pitfalls. This is an instance of a pitfall because of the time required to make a product better, the red tape that needs to be cut. We all know that, in the mean time, cluster sufferers ARE able to freely purchase the mask on their own. It will just take time to get OUCH UK's endorsement of it. Which, by the way, should hugely increase sales for Ben.
As to the deletion of the seeds thread...hey, it happens. As a webmaster myself, I've made mistakes in trying to archive or clean up our message board. Once something is accidentally deleted, it is gone for good. All you can say is "oh shit" and I'm sure MOB has used that expression in his lifetime more than once. If they (OUCH) were trying to censor the discussion - there would be no subsequent threads on the LSA seeds. And there are. So don't let yourselves be led down the OUCH UK bashing road again here without knowing ALL the facts, ok?
edited to ad: BobP and I were posting at the same time. I was going to quote Mo Graham's post about the masx from that same thread - it's very similar to Chris' post here so I won't take up any more of DJ's bandwith by doing that. Bob illustrated my point with his quote.
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| « Last Edit: Dec 19th, 2005, 3:06pm by Margi » |
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Flash
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on Dec 19th, 2005, 3:04pm, Margi wrote:| I know Ben's mask is getting rave reviews and I personally will be ordering one for Mike before his next cycle. |
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No you won't Margi because Ben is no longer in a position to manufacture and distribute his mask. Now Mike will have to wait however many years it takes the mask to become available through the correct channels. But hey - at least he won't smother.
I hope the reality is sinking in now?
Sorry if those last 2 sentences read sarcastic, but there are people over here breathing welders O2 through firemans masks - do we report them to the authorities as well, just in case they smother?
I hope the reality is sinking in now?
As for the seeds - I think you are missing my point entirely. They are permitting seed discussion because their backs were against the wall. In the event the government changes it legislation the OUCH (UK) will not lift a single finger to dissuade them or lobby for cluster headache dispensation. And when was the last time someone died through ingesting LSA? Err never???
Also I think you'll find that the clustermasx issue has arisen subsequent to the official statement that BobP posted. In other words, due to pressure from their members they backed down and permitted the link, then stabbed Ben in the back.
I used to wonder why the US fought a war of independence. But now I realise that it was to get away from a bunch of anal retentive, self pointed twits making up the rules as they go along, and ensuring that anyone who doesn't bend to their will is suitably punished.
Do not defend these idiots because there is no excuse for their actions.
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| « Last Edit: Dec 19th, 2005, 3:30pm by Flash » |
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seasonalboomer
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Re: OUCH (UK)
« Reply #12 on: Dec 19th, 2005, 3:54pm » |
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on Dec 19th, 2005, 3:04pm, Margi wrote:
In my opinion, they're trying to help him get it approved for public use.
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Yeah, right! That's what it must be. They're helping him help himself and others by their actions. What a crock.
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Margi
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Re: OUCH (UK)
« Reply #13 on: Dec 19th, 2005, 3:55pm » |
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Have I missed something? Has there been an injunction placed to STOP Ben from producing the masks? Or has he just stopped on his own because of waiting for a ruling?
Scott? Are you a member of OUCH UK? Or are you just going by what you're reading in this thread?
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| « Last Edit: Dec 19th, 2005, 3:56pm by Margi » |
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fubar
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Re: OUCH (UK)
« Reply #14 on: Dec 19th, 2005, 3:55pm » |
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OUCK (UK) needs new leadership. The current leaders (and those that defend them) suck ass. I'm sorry I can't be more polite about it.
Anyone who knows what CH is all about (do they?) should be fighting like crazy to help CH sufferers. Instead, I see a bunch of uptight moral police who only accept treatments that are 'acceptable' rather than effective. These fuckwits should be tossed out on ther ear and replaced with people who genuinely seek relief for sufferers, no matter how close to the edge of legality they have to come. Instead, they use their position to impose a moral dogma that is in conflict with the true nature of their purpose. Sad and disgusting. Much like the post I just had to write.
Sorry folks, this kind of treachery brings out the ugly in me. They could do plenty more than they do without risking anything. Their strict interpretations only serve their moral agenda, not the CH sufferers.
Fuck off OUCH UK.
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Jonny
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Re: OUCH (UK)
« Reply #15 on: Dec 19th, 2005, 4:05pm » |
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Margi,
A couple of years ago Ben sent me two prototypes of his mask, I dont think he made any major changes to it. I sent one to mr Happy and have only used the one I kept once to try it out for two reasons, my mask works just fine and I have not had more than a shadow in about a year.
If you cant get one....your welcome to the one I have 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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Margi
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Re: OUCH (UK)
« Reply #16 on: Dec 19th, 2005, 4:12pm » |
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yeah, ok - WHATever. 
I'm not getting into a pissing match here again in defense of OUCH UK - I will always defend EVERY OUCH organization, even though that does apparently mean that I suck ass. Thanks for that, by the way, Shawn.
To my knowledge, Helen, Johnny, Bob and I are the only ones in this thread who are members of OUCH UK, with access to the message board. And therefore, the only ones here who have actually seen these threads in their entirety. Instead of only the parts of it that are being brought to this forum.
I'm done.
p.s. Thanks, Johnny - you and I were posting at the same time. I appreciate your offer. Thanks very much for that! I'm planning on getting in touch with Ben after the holidays about a project OUCH Canada is thinking of undertaking anyway, so hopefully we can help this project get back on track. Seriously, Johnny, thanks.
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| « Last Edit: Dec 19th, 2005, 4:15pm by Margi » |
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seasonalboomer
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Re: OUCH (UK)
« Reply #17 on: Dec 19th, 2005, 4:31pm » |
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on Dec 19th, 2005, 3:55pm, Margi wrote:
Scott? Are you a member of OUCH UK? Or are you just going by what you're reading in this thread? |
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No Margi, not a member of Ouch UK, but you knew that didn't you?
Yes, I'm going by what has been written in this thread and in previous threads regarding Ouch UK's seemingly twit-like policies.
Direct answers to underhanded questions - how's that?
I simply said that the idea that that they're "helping" Ben seemed like a "crock" to me. No reason for the claws Margi.
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totka2
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Re: OUCH (UK)
« Reply #18 on: Dec 19th, 2005, 4:40pm » |
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In my opinion OUCH UK leader's function is not to denounce Ben but help him in official approval of Clustermasx.
Do you know that inspired "gas'" oxygen-concentration is higher in Clustermasx than in a common non-rebreather mask? Therefore works Clustermasx perfectly.
Canadian Summit Technologies Inc. developed a HiOx (high oxygen concentration) mask and made a comparisation vs. non-rebreather mask.
http://www.summittechnologies.ca/products/hiox_graphs.htm
Clustermasx is similar: separated in- and out valves but Cmasx's face mask is more comfortable.
I love Clustermasx because it works in 5 minutes and MOB of OUCH UK ...  no comment.
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| « Last Edit: Dec 19th, 2005, 4:44pm by totka2 » |
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fubar
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Re: OUCH (UK)
« Reply #19 on: Dec 19th, 2005, 4:46pm » |
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Margi,
Are you on the BOT at OUCH (UK)? If not, the comment was not directed at you.
-Shawn
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Margi
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Re: OUCH (UK)
« Reply #20 on: Dec 19th, 2005, 4:48pm » |
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on Dec 19th, 2005, 4:31pm, seasonalboomer wrote:
No Margi, not a member of Ouch UK, but you knew that didn't you? |
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nope, didn't know either way, Scott - there are over 400 members over there, I honestly had no idea if you were one of them.
on Dec 19th, 2005, 4:31pm, seasonalboomer wrote:| Yes, I'm going by what has been written in this thread and in previous threads regarding Ouch UK's seemingly twit-like policies. |
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"seemingly" is the key word there, Scott - if you're not a member there reading the boards then how can you speak to a subject intelligently if you're not hearing the WHOLE story?
on Dec 19th, 2005, 4:31pm, seasonalboomer wrote:| Direct answers to underhanded questions - how's that? |
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mmm, pardon? Nothing underhanded in my intent.
on Dec 19th, 2005, 4:31pm, seasonalboomer wrote:| I simply said that the idea that that they're "helping" Ben seemed like a "crock" to me. No reason for the claws Margi. |
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No claws here. I was simply asking you a question, Scott. I honestly don't understand why this seems like a crock to you, especially if you're only reading one side of this issue. How CAN you form a judgement of anything if you don't know the entire issue at hand?
Edited to add - no, Shawn, I'm not on the BOT - but I did interpret your insult to include me, because I do defend ANYONE who volunteers their time to form or participate in an OUCH chapter ANYwhere. So, yeah, I guess that means I still do, indeed, suck ass.
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| « Last Edit: Dec 19th, 2005, 4:53pm by Margi » |
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fubar
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Re: OUCH (UK)
« Reply #21 on: Dec 19th, 2005, 4:59pm » |
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Margi,
I'm sorry I may have inadvertantly included you on the 'sucks ass' comment, it was not intentional *unless* you actually think they are doing everything possible to support CH sufferers. I concede they provide support to *some* people and that this is 'a good thing'(tm) BUT it is not nearly enough. Their policies are derived from puritanical interpretations of British law and they show no willingness to push the envelope in favor of the CH sufferer. I'm not advocating breaking any laws, but they could certainly operate legally and still provide access to much needed information. They do not. This is indefensible.
-Shawn
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Re: OUCH (UK)
« Reply #22 on: Dec 19th, 2005, 5:12pm » |
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One last question Margi...
How can anyone defend an organization that BANS sufferers? I don't care why they are banned... they are banned. Think about it. You can get help here IFF you follow our rules and never violate the holy laws we have formed in a vacuum. Fucking unreal. OUCH (UK) BOT are a bunch of fuckwits who have lost their compass. I wish all of them would have KIP 10 headaches until they actually NEED the kind of help they deny others.
-Shawn
edited for spelling
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| « Last Edit: Dec 19th, 2005, 5:16pm by fubar » |
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Margi
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Re: OUCH (UK)
« Reply #23 on: Dec 19th, 2005, 5:26pm » |
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Shawn, I can't comment on that - I wasn't there when it happened, and I don't know the circumstances surrounding the decision, nor is it any of my business how security issues are addressed by the webteam.
From what I understand, though, Flash is cured of his clusters now so it should be a non-issue for him that he can't access a forum for which he personally has no need.
Has anyone else, to your knowledge been banned from OUCH UK? You said "sufferers" (plural). Who else has been banned?
I don't know about you, but I'd much rather actually take out a membership at OUCH UK and learn about them from ALL sides before making arbitrary judgements based on biased threads I read here. In fact, I've done that already, so I do feel completely justified in speaking to this subject because I HAVE spent time over there to see both sides of these issues. Trust me, there IS more to this picture than is being represented here.
edited to add: I've NEVER seen a cluster sufferer wish a Kip 10 on ANYONE. That's pretty low.
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| « Last Edit: Dec 19th, 2005, 5:28pm by Margi » |
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Re: OUCH (UK)
« Reply #24 on: Dec 19th, 2005, 5:47pm » |
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I'm a member of Ouch UKand have seen 'all sides'. Totally unfair to Ben past and present in my opinion.
Also I feel that the LSA thread will not last for much longer. I stated on the boards recently that I would be delighted for ANYONE that got painfree with anything regardless of which 'label it comes under, also that I'm not ashamed or embarrassed about taking LSA seeds!
I'm painfree, haven't dosed in nearly five weeks and feel really strongly. The aim is to get painfree isn't it?
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