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Title: OUCH (UK) Post by Flash on Dec 19th, 2005, 12:52pm 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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Title: Re: OUCH (UK) Post by Flash on Dec 19th, 2005, 1:03pm 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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Title: Re: OUCH (UK) Post by Flash on Dec 19th, 2005, 1:23pm 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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Title: Re: OUCH (UK) Post by LeLimey on Dec 19th, 2005, 1:28pm 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:
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Title: Re: OUCH (UK) Post by pattik on Dec 19th, 2005, 1:33pm 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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Title: Re: OUCH (UK) Post by Flash on Dec 19th, 2005, 1:33pm 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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Title: Re: OUCH (UK) Post by Linda_Howell on Dec 19th, 2005, 1:47pm 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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Title: Re: OUCH (UK) Post by Flash on Dec 19th, 2005, 2:03pm 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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Title: Re: OUCH (UK) Post by seasonalboomer on Dec 19th, 2005, 2:11pm that's just freakin' sad. :-[ what a pitiful state of affairs. scott |
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Title: Re: OUCH (UK) Post by Bob P on Dec 19th, 2005, 2:31pm 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:
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Title: Re: OUCH (UK) Post by Margi on Dec 19th, 2005, 3:04pm 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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Title: Re: OUCH (UK) Post by Flash on Dec 19th, 2005, 3:27pm on 12/19/05 at 15:04:09, Margi wrote:
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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Title: Re: OUCH (UK) Post by seasonalboomer on Dec 19th, 2005, 3:54pm on 12/19/05 at 15:04:09, Margi wrote:
[smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] 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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Title: Re: OUCH (UK) Post by Margi on Dec 19th, 2005, 3:55pm 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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Title: Re: OUCH (UK) Post by fubar on Dec 19th, 2005, 3:55pm 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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Title: Re: OUCH (UK) Post by Jonny on Dec 19th, 2005, 4:05pm 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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Title: Re: OUCH (UK) Post by Margi on Dec 19th, 2005, 4:12pm 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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Title: Re: OUCH (UK) Post by seasonalboomer on Dec 19th, 2005, 4:31pm on 12/19/05 at 15:55:50, Margi wrote:
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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Title: Re: OUCH (UK) Post by totka2 on Dec 19th, 2005, 4:40pm 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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Title: Re: OUCH (UK) Post by fubar on Dec 19th, 2005, 4:46pm Margi, Are you on the BOT at OUCH (UK)? If not, the comment was not directed at you. -Shawn |
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Title: Re: OUCH (UK) Post by Margi on Dec 19th, 2005, 4:48pm on 12/19/05 at 16:31:01, seasonalboomer wrote:
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 12/19/05 at 16:31:01, seasonalboomer wrote:
"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 12/19/05 at 16:31:01, seasonalboomer wrote:
mmm, pardon? Nothing underhanded in my intent. on 12/19/05 at 16:31:01, seasonalboomer wrote:
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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Title: Re: OUCH (UK) Post by fubar on Dec 19th, 2005, 4:59pm 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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Title: Re: OUCH (UK) Post by fubar on Dec 19th, 2005, 5:12pm 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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Title: Re: OUCH (UK) Post by Margi on Dec 19th, 2005, 5:26pm 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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Title: Re: OUCH (UK) Post by Kateeast on Dec 19th, 2005, 5:47pm 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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Title: Re: OUCH (UK) Post by Pinkfloyd on Dec 19th, 2005, 5:55pm on 12/19/05 at 17:26:41, Margi wrote:
I'll try to stay out of this main ring match, since I have several of my own at the moment but I thought I'd comment here. Hopefully it'll be taken as food for thought and not kindling for the flames...a couple side-points... I suppose the fact that the OUCH's have given honorary memberships to people that do not have clusters, should attest to the fact that one must not be currently suffering from clusters, to participate. That would sort of cut down on doctors and researchers participating. I guess supporters also should feel it a non-issue if they couldn't access a site about clusters? I have seen some comments from Prof. Goadsby where he felt psilocybin should be further studied for the treatment of clusters. If he publicly states psilocybin (correct me someone if I am wrong and he hasn't done so) merits further research, and hasn't been banned from participating at OUCH UK, then it must be something else that gets people banned, and not calling for research or having to be in cycle to be a member in good standing. If the threads were open to everyone to read, then it would be easier to discuss this all properly Margi. I agree it's difficult. But since they are closed, how else would someone begin a discussion on a topic? Without bringing over the entire threads, it makes it difficult. I guess if there ARE two sides (and there always are) then it has to be done just like all discussions, with people submitting their own "evidence" I guess. Besides that, I know its all in english but half the things I read from across the pond need a bit of translation. They just don't talk us 'mericans. Maybe its easier for Canucks? My point, I think some things may be lost in translation. Bobw I think I stayed out of it but...probably not |
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Title: Re: OUCH (UK) Post by tommyD on Dec 19th, 2005, 6:19pm The OUCH UK Board has allowed discussion of LSA seeds for a while now. But there are no LSA threads in the Medications Diagnosis board anymore. MOB (Mike O'Brien) set up an alternative threapies board, but in the process of transferring the threads two long ones, 9 or 10 pages each, were lost in the transfer. A third thread on LSA is still up and active in the alternative treatments section, along with 6 or 7 threads on LSA research, and other topics. MOB apparently tried to replace the two lost threads, but it seems you can't just drop pages back onto a YABB board, you must rebuild them post-by-post. But that task looks like a real, long tedious chore, and only a few posts are availabe. Then the shit hit the fan over the clustermasx, and I think MOB stopped work on this, and apparently a lot of other things. Why the lost pages are not just placed as straight web pages on the OUCH UK site with links from the message board, I don't know. One of the sources of conflict seems to be a misunderstanding on what was asked of the OUCH UK trustees - though I suspect the "misunderstanding" was something else... Margi - the request was NOT to have OUCH UK endorse the clustermasx... posting a link is NOT an endorsement, and no one with knowledge of Internet law truly thinks it can be construed that way. The trustees and their allies kept returning to this argument, however...its a tactic that reminds me of certain politicians I will not mention (to avoid even more conflict), and I don't buy it. Not only do I not buy it, it damaged their credibility with me. There are a couple things that should be understood here. One is that there seem to be some personality things going on, and there are a lot of things going on behind the scenes - none of which I know, or really care to know, anything about. But they seem to have been going on a long time. And Margi - you wouldn't be Margi if you didn't defend OUCH UK and every other OUCH there is. That's why we love you. But your defense here may be misplaced. OUCH UK set up quite an organization, and has done some great things...but the censorship of information has been going on a long time, and threatens to undo the positives. Example - the OUCH UK telephone help line is an excellent service to sufferers, one I hear OUCH US wants to emulate. But the other day, a help line volunteer was upset - he said he couldn't take the bad taste in his mouth anymore when advising a sufferer about oxygen because he was not allowed to mention the Clustermasx. There may well have been legal threats to the OUCH UK charter (though I doubt it...these arguments sound overblown) and organization over shrooms, LSA and the Clustermasx...but so what. Charters, organizations, web sites can all be replaced. Should some fellow see no hope and off himself when a tryptamine or a better mask could have ended his pain...all the charters and organizations in the world won't make up for that. It takes courage and sacrifice to buck the status quo. Many folks have put their freedom and careers on the line to make sure clusterheads find relief in spite of bureaucrats and lawyers and government authoritarianism. The OUCH UK Trustees are not willing to do that, and I wouldn't blame them (I'm a little wimpy myself sometimes) except they cling to a position of leadership when what they are is IN THE WAY. It's nice to have a good organization, but its better to help folks overcome the Beast. If it's a choice between following the rules or going out to take on the BEAST, I say, "Let's roll..." -tommyD |
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Title: Re: OUCH (UK) Post by pubgirl on Dec 19th, 2005, 6:24pm Forgive me if I understand this wrongly but this is how I see it right now. Helen's pasted quote from the MHRA communication says that Ben HAS NOT BEEN PROHIBITED from supplying the masx by the MHRA. What this means to me is that: 1: Ben has decided, for reasons he may well explain here perhaps, that he will not for the time being supply the mask openly. These may be very good reasons but I would like to understand them. 2. That if the MHRA decides that the masx isn't safe we are probably scuppered 3. That if the MHRA decide that the mask is great and ratify it, the masx is an even more powerful piece of equipment for CH'ers than it ever was as it will not only work but could be PRESCRIBED AND RECOMMENDED as well, and by this I mean by all the medical profession as well as just by sufferers. I am not justifying or defending anything which as happened, as unlike Kate I KNOW that even as a member of OUCH I DO NOT know all that has transpired and I think it wholly naive for anyone to imagine that they do, even those personally involved. What I AM sure of is that we need to look for ways to make this situation come out well in the end for CH sufferers as no-one wins at the moment. Wendy yeh, and Merry Fucking Christmas to you too Flash :P. Timing stinks from a human point of view, but also because actually your message will be lost on lots of people who you might have wished to reach and communicate with and influence at this time of year as they have little time to read or post. modified only to stick my tongue out at Craig |
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Title: Re: OUCH (UK) Post by Beastfodder on Dec 19th, 2005, 6:53pm I do remember finding the 'shroom disclaimer statement on the OUCH UK website and still thank my lucky stars I did. Because of that, care of Google and I arrived here last year along with visiting the clusterbuster site and for the first time ever I've broken a cycle. Year after that I've had four headaches in a brief cycle, swear by the clustermasx as an abortive and am pretty close to being as happy as clusterheads get. I'm also not unhappy with OUCH UK. I've spoken to Mike Pollock who's a decent guy and gave me loads of time and his experience - genuinely pleased and not shocked clusterbusters worked etc. On getting me O2 fast when I wanted they were great. As was Ben getting me a mask - and the whole prospect of testing and approval sounds time consuming and expensive but necessary if court cases fly about. I can't honestly see a sufferer not being able to get hold of one in the interim - so long as the cluster community continues to beg, borrow and steal on behalf of fellow sufferers. As for psychedellics and OUCH - who knows? That they've moved in the year to support LSA threads is excellent news - as is that the treatment is, I believe, working for sufferers. As a clusterhead you gravitate to reading success stories and now the truth is out there it's hard to run away from. I've even been invited to post there so we'll see. Isn't it supposed to be Christmas anyway ? Have a bloody good pain free one - all of you, go on now, stop squabbling or Santa will be very cross |
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Title: Re: OUCH (UK) Post by fubar on Dec 19th, 2005, 7:17pm Margi, I did join OUCH UK a long time ago. I have chosen not to go there anymore because of their stance on discussing HELP for CH suffererers. I have even visited OUCH UK members in the UK and personally talked to one ONSI patient and spent some time with the infamous Wendy, which I enjoyed very much. I have no desire to alienate you are cause you to view me as the enemy. If that's where we end up, then it's only because you can't accept that I have a very legitimate criticism of the OUCH (UK) BOT. You don't run the show there, so I have no problem with you. However, I fail to understand how this kind of behavior can be defended. Yes, I said I wished a KIP 10 on them until they NEED the same help they DENY others. So, that makes me a bad person I guess. I stand by it. By denying access to all forms of help they know about, they deserve that kind of hell. It's not like anyone is asking them to do anything illegal. Furthermore, since when did all of the OUCH (UK) BOT even have clusters? I have never seen anybody attest to that. Are you telling me that the BOT at OUCH (UK) all have clusters? And for Goid's sake, who better to include on a board like OUCH (UK) than a person who has found something that CURED him? As far as I know, Flash is not cured anyway, he has found a TREATMENT that works. How does that escape you? You want me to produce a list of people who have been banned from OUCH (UK)? Why? You know it happens, we have more than one person on this board and clusterbusters that has been banned. What is the point of the question? This is exactly how every attack on the BOT at OUCH (UK) goes... it's like a script: 1) Some infadel brings up a valid gripe about their dumbass policies 2) Some defender jumps in to misdirect the conversation with personal attacks and pointless questions having nothing to do with the policy. Also, many other points are refferred to but not ever clarified, leaving even more questions in people's minds to cloud the issue 3) OUCH (UK) keeps up the misdirection until the thread fizzles out 4) Wait several weeks 5) Repeat I'm sure it just chaps their hide that they can't DELETE these threads here like they do there. on 12/19/05 at 17:26:41, Margi wrote:
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Title: Re: OUCH (UK) Post by pubgirl on Dec 19th, 2005, 7:40pm on 12/19/05 at 19:17:27, fubar wrote:
Shawn Now THAT'S funny. I cannot tell you how many little visions and scenarios of OUCH BOT meetings that are now running around my head. Get your drift and agree wholeheartedly that the BOT needs some less conservative blood but Flash oooooeeeerrrrrr!!! :o :o :o :o Off to bed giggling now. Thanks Fu! Wendy |
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Title: Re: OUCH (UK) Post by fubar on Dec 19th, 2005, 7:51pm OMG Wendy... I didn't mean on the Board of Trustees... I meant on the board as in 'not banned'. :) |
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Title: Re: OUCH (UK) Post by pubgirl on Dec 19th, 2005, 8:01pm Thank the Lord for that Fu, thought you'd lost your marbles for a moment there, still enjoyed the visions I had though ;;D W but then I have a mightily warped sense of humour |
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Title: Re: OUCH (UK) Post by mrs mac on Dec 19th, 2005, 9:06pm just love how you guys love to slate OUCH UK (NOT)!!!!!!!!!!!! Flash, get a life, and leave ours alone, you obviously don't like ouch uk, so just butt out!!! sorry know it sounds a bit harsh, but am pissed off with some people who think they can have a go whenever they feel like it!!! if u don't like us, then just stay away!!! merry christmas, and hope it's a pf one to all of you sandra xxx |
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Title: Re: OUCH (UK) Post by fubar on Dec 19th, 2005, 9:29pm on 12/19/05 at 21:06:17, mrs mac wrote:
That about sums it up. If you don't like us, stay away. That's how DJ runs this site. The important difference between CH.com and OUCH (UK) is we don't censor or ban those who WE don't like. The difference is lost on you, Sandra. Support sites are there to support the agenda of the sufferer, not the hybrid agenda of stuffed shirts and the sufferers. I know that's an unpopular view with those in control at OUCH (UK), but it doesn't make it invalid. And as long as OUCH (UK) keeps weeding out those that violate the cruel an inhumane denial-of-information rules that are in effect, I'm sure we'll see a long line of supporters from OUCH (UK) who agree with the policy. Understand? If you keep removing the posts and memberships of those who disagree, all you have left are supporters of the agenda. Lastly, it amazes me that you think it's OK to run a 'support' site like a friends-only club. "If you don't like us, stay away" is a lot different than "If we don't like you, we'll censor you and ban you". -Shawn |
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Title: Re: OUCH (UK) Post by mrs mac on Dec 19th, 2005, 9:32pm seems to me that some of you guys forget that we are here to support each other, you will not drive me away, i am bigger than that!!! you guys all love to slag off OUCH UK, ok go ahead, but you guys keep going on about freedom of speech, so i am just having my say sandra xxx |
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Title: Re: OUCH (UK) Post by fubar on Dec 19th, 2005, 9:39pm Don't ever go away Sandra, and I mean that sincerely. |
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Title: Re: OUCH (UK) Post by mrs mac on Dec 19th, 2005, 9:42pm i won't ;) would take more than this shawn, believe me, i am here for the long haul, these sites mean too much to me and my cluster head!!!! sandra xx |
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Title: Re: OUCH (UK) Post by catlind on Dec 19th, 2005, 10:19pm The advocacy team with OUCH US is in the process of supplying researchers and neuro's with Ben's masx to begin a process of clinical study to get the mask endorsed and prove it's efficacy, (or not as the case may be). If Ben is no longer producing the masx because of being under investigation, how will this affect us trying to get clinical studies moving on it? Does this mean that we are at a standstill and won't be able to continue to pursue the trials? I have no wish to get involved with whether OUCH UK is or is not anything, I am asking genuine and sincere questions that I need answers to before the advocacy team can move further on this. Randy is in contact with Ben, but as of now, we have not heard anything back, and if anyone here can shed some light on my questions it would be much appreciated. Cat |
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Title: Re: OUCH (UK) Post by Pinkfloyd on Dec 19th, 2005, 11:56pm on 12/19/05 at 22:19:56, catlind wrote:
Can't shed any light...my batteries ran out, but... My guess is that he may be trying to find out what he can and can not say without getting into more trouble. This passage that was posted here... 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. They may not have told him to stop, just that if he doesn't, he would be prosecuted....semantics. He may be able to argue ignorance of the law before but not after being told. Sounds more like a, "go ahead, just keep selling them, I dare you" from the MHRA. If I were you, besides being Canadian and much younger....I'd keep on keeping on with your project. I'm (pretty) sure Ben will find a way to supply masks for research.....even if he has to sub out the manufacture to some willing US conglomerate. ;) Bobw |
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Title: Re: OUCH (UK) Post by Mr. Happy on Dec 20th, 2005, 12:07am on 12/19/05 at 23:56:35, Pinkfloyd wrote:
Ding! on 12/19/05 at 23:56:35, Pinkfloyd wrote:
Ding again, and bugger off with your capitalistic thoughts, Bob. I saw him first. RJ |
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Title: Re: OUCH (UK) Post by Pinkfloyd on Dec 20th, 2005, 12:40am on 12/20/05 at 00:07:05, Mr. Happy wrote:
[smiley=laugh.gif] Bugger off??? LOL...Bloody hell, you're already talking with a British accent. Well, if we can invade places for oil, I see no reason to slow down if we need to secure a free flow of oxygen!! Be well my friend, Bob |
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Title: Re: OUCH (UK) Post by Mr. Happy on Dec 20th, 2005, 1:18am on 12/20/05 at 00:40:22, Pinkfloyd wrote:
Cheesus, man. And I thought _I_ was devoted. "A chicken in every pot, and a Clustermasx (http://clustermasx.com) in every garage." A Goal is a Goal. RJ |
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Title: Re: OUCH (UK) Post by catlind on Dec 20th, 2005, 1:24am Well Blimey! You two are bloody brilliant! Now if the Limey's will just sit back, have a fag, a trip to the loo and put masx in everyone's boot we'll be good to go! My mother was born in Nottingham ;) Cat Edited to add: Translations available upon request ;) |
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Title: obRe: OUCH (UK) Post by Mike_P on Dec 20th, 2005, 4:04am Quote:
Bob, sorry not correct, Ben has apparently stopped supplying the masx for his own reasons. I have been assured by the MHRA they will not take any action against him at all other than possibly asking him not to sell the product until they have granted a license or decided that the mask is a dangerous piece of equipment. However at the moment he can sell it if he wants They made the point to me that all pieces of medical equipment need to be checked, this includes all medicinal drugs. They said that if there were no laws in force to stop people inventing drugs there would obviously be dire consequences. Not unreasonable in my opinion. I found the MHRA very sympathetic and most unlike a government body. I’m sure that Ben will end up with a licensed product and will be able to sell it legitimately Mike |
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Title: Re: obRe: OUCH (UK) Post by Flash on Dec 20th, 2005, 5:38am on 12/20/05 at 04:04:20, Mike_P wrote:
LMAO. So Ben had APPRENTLY stopped supplying the masx for some reason of his own. Wow what an amazing coincidence! And this obviously has NOTHING WHATSOEVER to do with being reported to the MHRA. It's just Ben being unreasonable... right? I think that your personal interpretation of what the MHRA have told you is taking a few liberties with the truth. What the MHRA have quite clearly stated is, that Ben stopped supplying the masx BEFORE THEY TOLD HIM TO STOP SUPPLYING THE MASK. If Ben continued to supply the masx, then the MHRA would tell him to stop, and this would be viewed in a dimmer light than if he had ceased voluntarily! That is absolutely crystal clear from the MHRA's statement. So Mike - if you were in Ben's position, under investigation and threatened with the possibility of prosecution, would you continue making the masx? I just love how the blame here is being shifted onto Ben! Who reported him in the first place? Would it really have been so DIFFICULT just to turn a blind eye and let him continue producing the masx for those in need? Ben was already seeking to have a manufacturer of medical equipment take over ownership and production of the masx. And here there is some interesting politics also if I'm not mistaken. Is it not true that OUCH (UK) had some 'interest' in the outcome of those proceedings? What next - report the seed resellers to the MHRA and have them closed down? A trend appears to be developing. Someone finds out a means of more effectively treating their clusters. Said person then notifies other sufferers through message board, and offers to help others achieve the same. OUCH (UK) construes a way for this activity to be deemed illegal, and focuses on having access to this information shut down. SOMEONE then reports said person the the authorities. Margi - please stop defending these twits. They are wrong. They are NOT a properly elected body, they are self appointed. Here in the UK we have no easy means of removing them from office, and appointing people that will better represent us. The best we can do is bring them to task here. And thank God we have that option! |
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Title: Re: OUCH (UK) Post by Simon on Dec 20th, 2005, 6:22am Hi Flash, I have stayed away from OUCH (UK) for a while as, as is well known, I disagree with the policy of censorship of the message board, in terms of trivial things like taste and language. As far as more weighty matters are concerned, that ultimately has to be up to the board of trustees in terms of advice they have received etc. I may not agree with them, but I am no longer involved at that level. Right? I'm not a lackey. However, the idea that they withhold stuff in order to prevent treatments reaching clusterheads is so ridiculous as to question the sanity of anyone saying it. What the fuck do you think they spend their time doing? Perhaps we should let people who think that say it on the OUCH (UK) board simply so we can sue them and end the matter. They feel that by going carefully (yes they are a conservative bunch) they can achieve more in the long run. Question methods not motives! Other points: self-appointed is a rather pejorative and loaded phrase. Certainly, they were not elected, but who would have elected them? They started the organisation. Were the framers of the US Constitution self-appointed in that sense? (Remember I was there at the outset of OUCH (UK) and remember the care taken to get a balance of skills and interests from what we had at hand.) Does election guarantee success? - is OUCH itself an advert for that? (Though curiously I was appointed to that board not elected...) Suggest six people who might be good, and I myself will pass those names on to the relevant people. There will be some vacancies on the board within the next year. As to them having clusters - which is monumentally irrelevant (imagine if that rule were imposed on mental health, or children's charities..) - to my knowledge all but one do (the remaining character is in place because of his knowledge of charities). If people are going criticise an organisation it behoves them to get their facts straight. Cut out the personal abuse, and what you say may have more impact, other than just irritating those of us who know, and winding up those who don't. I appreciate all that Flash has done. If he has worked with the BoT to follow up his researches and they have turned him down, for what they see as valid reasons, so be it. That does not give anyone the right to be as abusive as this, and consequentially makes some sort of rapprochement unlikely should the time come when the Board feels confident enough to expand their deliberations. Finally - I don't know all the ins and outs of the mask case - but even if Ben's interpretation is that he can't/won't/daren't risk selling in the UK, can he not continue to supply to the US? Bewildered and pissed off, Dolly modified to add: It might be worth remembering that it was through the pressure/support of OUCH (UK) tht oxygen was added to the approved list in the first place. Without that discussions of mask to dispense it become somewhat irrelevant. |
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Title: Re: OUCH (UK) Post by Flash on Dec 20th, 2005, 9:40am on 12/20/05 at 06:22:23, Simon wrote:
They have no right to censor a treatment. on 12/20/05 at 06:22:23, Simon wrote:
They have a well established track record of doing this. Although the seeds are similar (and identical to the status on shrooms before the change in the law), there are people who experience much better results with the shrooms; discussion of shrooms is still valid. on 12/20/05 at 06:22:23, Simon wrote:
I would love to say that on the UK board, but last time I tried they banned me. on 12/20/05 at 06:22:23, Simon wrote:
Censoring this treatment is not being careful. This treatment has been known about for 11 years. What do you consider careful? 20 years, 100 years? In our childrens lifetime? on 12/20/05 at 06:22:23, Simon wrote:
No, but correct me if I'm wrong - didn't those founding fathers then draft a constitution that included free democratic elections and freedom of speech? In fact were those not the central points underpinning that constitution? A constitution that is admired the world over. I cannot believe you choice of analogue! on 12/20/05 at 06:22:23, Simon wrote:
You could start with Peter, Ben, and Richard. on 12/20/05 at 06:22:23, Simon wrote:
I agree with you on this one, but find it incredible that one clusterhead would censor information of a treatment and by doing so deny others relief from the same condition. on 12/20/05 at 06:22:23, Simon wrote:
Simon - have you actually read any of the posts by people from OUCH (UK) directed at me? The worst I have done is call them twits, which I feel is completely accurate and justified. At least the bulk of content in my posts are reasoned arguments. on 12/20/05 at 06:22:23, Simon wrote:
Let's not have "SO BE IT". Let's have some democratic elections and permit ALL clusterheads in the UK to elect a new board that will do the right thing instead of imposing their own uber conservative moral veiwpoint on the rest of us. on 12/20/05 at 06:22:23, Simon wrote:
I am completely justified in calling those twits, twits. Jesus you should see me when I get really abusive! on 12/20/05 at 06:22:23, Simon wrote:
You are kidding right? You mean that because I called them twits, they might just decide to withold information of a cure even longer to punish us all for my sin??? WTF??? Wow it must be amazing to have that POWER! on 12/20/05 at 06:22:23, Simon wrote:
There are not ins and outs. If he attempts to supply the masx again then he will be told to stop. If you were Ben would you risk supplying the masx at all? Let's just get this straight. The people that grassed him off in the first place are now suggesting he continues to manufacture it??? Or is this just your idea??? Very brave of YOU Simon! on 12/20/05 at 06:22:23, Simon wrote:
True. |
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Title: Re: OUCH (UK) Post by Flash on Dec 20th, 2005, 9:42am on 12/20/05 at 06:22:23, Simon wrote:
Deleting information on a promising alterative treatment. This inlcudes an entire thread that, for some reason, is impossible to replace... although a monkey could have re-typed the fucker by now. They have banned several people for disagreeing with them. In my case this came after an exchange of 2 emails each way. They have reported Ben to the MHRA. And now it appears discussions of clustermasx are also being censored. All of this is factual. On the plus side they have setup a helpline, and made O2 available on prescription. Both of which are commendable. But they did not lift a finger to seeks dispensation for clusterheads on the mushroom law. And they have not helped persuade anyone to have some proper research done on the shrooms/seeds. |
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Title: Re: obRe: OUCH (UK) Post by Pinkfloyd on Dec 20th, 2005, 10:19am on 12/20/05 at 04:04:20, Mike_P wrote:
OK Mike, thanks. That's different than the previous statement upon which I based my "guess" I suppose the best thing is to wait for an official word from Ben before I make my next guess. Since I'm not privy to all the facts, can I ask anyone that might know. Did anyone ask Ben if he was working for approvals with the MHRA before asking the MHRA if they had certified the mask? Did anyone say to Ben, (and honestly, I don't know) hey; "we'd really like to support and promote its use but need to make sure it's been certified by the MHRA, is it?" It's not like he was some unknown spammer trying to sell something know one knew anything about. JMHO. It reminds me a bit of the officials in New Orleans not allowing doctors to apply CPR to people until they went through an approval process. They actually stopped a doctor in the middle of CPR because he hadn't filled out a form. I know this is just my perception but it seems a reason people are upset. "You can't save that man's life until you fill out this form." Should the form be filled out, yes. Do you even ask him if he has a form, in the middle of CPR? Timing is everything in health care and fan dancing. Bobw |
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Title: Re: OUCH (UK) Post by seasonalboomer on Dec 20th, 2005, 10:28am on 12/19/05 at 16:48:11, Margi wrote:
Yeah, sure Margi, no claws, that's a good one. As far as the ability to form a judgement, if I don't "know" the issue at hand.... I guess I'm just gifted. Ben now needs to find himself a barrister and file the paperwork to protect his rights to this little invention, and protect himself from those that will one day be smoking a cigarette while sucking down 02 and end up burning the house down. I don't need to know anything else to state what I first said, "what a pity" and followed up with "what a crock". Scott |
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Title: Re: OUCH (UK) Post by Bob P on Dec 20th, 2005, 10:48am Hey Bob, this is posted on the UK site: Quote:
I haven't seen the mask firsthand. Is it more than just cutting the original bag off a non-rebreather and taping a bigger one on? |
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Title: Re: obRe: OUCH (UK) Post by Flash on Dec 20th, 2005, 10:52am on 12/20/05 at 10:19:26, Pinkfloyd wrote:
Bob - I suspect that this is the MHRA: "they will not take any action against him at all other than possibly asking him not to sell the product until they have granted a license or decided that the mask is a dangerous piece of equipment." And this is Mike: "However at the moment he can sell it if he wants Mike" To me it appears that Ben was oblivious to this requirement. As soon as they contacted him he voluntarily halted supply of the mask. Had he continued supply then it's a fair bet the MHRA would have 'asked' him to stop. Had he continued supply of the mask thereafter then he would have probably left himself open to a more serious prosecution. The wording is merely the polite English way of telling you to do something. Over the pond they would have said "FREEZE MUTHAFUCKA - STOP OR WE'LL SHOOT". This letter from OUCH (UK) to the MHRA asking for confirmation on whether Ben stopped of his own accord is OUCH (UK)'s way of trying to pass the blame for break in supply onto Ben. OUCH (UK) blew the whistle in the first place. So the situation is more like this: OUCH (UK) - Attention authorities that man is supplying unlicensed medical equipment. MHRA - Ben are you going to stop supplying that OR ARE WE GOING TO HAVE TO TELL YOU TO STOP. BEN - Oops sorry I've stopped. UK CHers - That's terrible of OUCH (UK) to stop Ben supplying his mask. OUCH (UK) - Dear MHRA please could you confirm that Ben stopped supply his mask before you had to tell him. MHRA - Yes Ben voluntarily ceased supply of his mask without before he was TOLD to do so. OUCH (UK) - The MHRA say "Ben voluntarily ceased supply of his mask", the MHRA never told him to stop. See - it's all Ben's fault! Unfortunately as OUCH (UK) are well aware, Ben is unable to comment on any of this because doing so might land him deeper in the shit. |
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Title: Re: OUCH (UK) Post by Flash on Dec 20th, 2005, 10:56am Quote: "Neither have we ever had any ‘secret agenda’ in trying to stop this mask from being produced. Quite the contrary. We told Ben months ago when he first invented the mask that we thought it was brilliant and that he should a) take out a Patent on it as soon as possible (he offered to let OUCH UK have this Patent, but we said right from the start that it was not within our charity remit to get involved in anything like that) - and b), we urged him at that time to have a Study carried out on it and get it properly licensed. We told him if he did this we would then be able to sell it on his behalf through OUCH UK. Mike P even approached Intersurgical on Ben’s behalf to ask if they would be prepared to carry out such a study since their components were already being used in the prototype. They told Mike that they would not be prepared to do this as they said the cost would be prohibitive for such a small return. We then asked Peter Goadsby if he would be prepared to carry out a trial, offering to ‘advertise’ this on our site to get volunteers for it. He said he was definitely interested, but that he needed funding in order to carry out such a Study. So we introduced him to the Medical Director of Air Products, who’s based in Madrid. Having put them in touch with one another, we then stepped out of the picture as we felt we’d done what we could to help Ben get his mask recognized. We know that the AP Director flew over to the UK specifically to discuss funding for this proposed mask study with PG. We heard it was a good meeting and that it was highly probable Air Products would find the money. (Naturally, having funded it, AP would expect to produce the mask if the study found it to be both efficacious and safe.) However, Ben has since been telling people that Intersurgical have agreed to manufacture/sell the mask on his behalf, and that they will be doing this in the very near future. The last we heard, Air Products were concerned about putting up funding for a study if Intersurgical were already in an Agreement with Ben. We don’t know what the current situation is - whether Intersurgical are indeed working with Ben, whether or not Air Products have now pulled out of any proposed trial of the mask at Queen Square. Unfortunately, our dealings with Ben have always been like this. He tells us he’s doing one thing, then does the opposite. We don’t know why Ben has been castigating OUCH UK or its Trustees regarding his mask as we did everything we could to help him in the early days to get it properly licensed and he knew exactly where we stood about advertising it on our site until this was obtained. The Trustees" *** This only misses out the part where they reported Ben to the MHRA. Obviously nothing more than an oversight on their part. |
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Title: Re: OUCH (UK) Post by thomas on Dec 20th, 2005, 10:57am And people are terrified by the bickering on the political threads. ::) Speaking as one on the recieving end of rhetoric like this, I find it amazing, the number out there who think we have secret agendas. I can't speak for OUCH UK, but as part of OUCH US I know that each and every one of the BOD and officers has every cluster sufferer's best interest at heart. There are lots of hoops we must jump through as an Org. to get treatments studied and approved. It takes time and effort. |
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Title: Re: OUCH (UK) Post by Bob P on Dec 20th, 2005, 11:03am Everyone blew past Totka's post whcih reveals that there already is a "legal" high flow mask on the market: http://www.summittechnologies.ca/products/nr_hiox80.htm Maybe you just need to have your doc prescribe it (even if it is Chanuckian). Flash, This also is on the OUCH board from MOB: Quote:
Looks like he talked with the authorities to make sure they weren't getting in deep caca and in doing so inadvertantly alerted them to the mask's existance. Doesn't sound like he talked to them to "report" Ben. |
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Title: Re: OUCH (UK) Post by seasonalboomer on Dec 20th, 2005, 11:19am on 12/20/05 at 11:03:56, Bob P wrote:
sure was a lot easier just going to Ben's site though and knowing he was a fellow clusterhead..... don't you think? |
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Title: Re: OUCH (UK) Post by Mike_P on Dec 20th, 2005, 11:40am Bob, you asked if the mask was different from the original ones available. Well, I have one of Ben’s units but mine has a mouth piece rather than a mask as I find this more comfortable. Ben very kindly delivered one to me at home some 15 months ago and I can’t see a great deal of difference from the original other than the fact that it has a much larger bag than on the standard bag and the effect is fantastic. I would suggest I would rather give up my wife than part with the mask! Everyone should, and can have one. I find that the pain rarely gets worse once I start using it, it is much, much quicker and it uses a lot less Oxygen. I have nothing but admiration for Ben’s ability to understand the way the original mask worked and making a massive improvement on it. In fact I was so impressed with it I took it, with Bens permission, and showed it to Peter Goadsby. I had a long conversation with Ben in August at a small meeting of Cluster Sufferers and suggested that we (subject to BOT approval) would promote his mask on OUCH UK. This was in company with one other poster to this site which I am sure if asked she would confirm. I did ask if it had official approval from the relevant authorities and got a very non-committal answer. In retrospect I have to admit we have subsequently not handled the negotiations very well with Ben. Both parties’ have not been very communicative. However for some posters on this thread to hint that we were withholding the availability from our members is ridiculous. I, and other trustees have been pushing the mask to all the members we know. I work every week on our helpline and always tell callers when discussing O2 therapy to consider Bens mask, as indeed I know other helpliners do too. I also admit to the fact that I tell sufferers that the mask is not licensed I accept that maybe we were a bit too keen to confirm the legality of the mask but I can only repeat that the MHRA are not even suggesting that he stops supplying the mask. Posters can put a spin on it if they so wish but they have had no contact as far as I know with the MHRA and I have. Mike |
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Title: Re: OUCH (UK) Post by seasonalboomer on Dec 20th, 2005, 11:51am on 12/20/05 at 11:40:31, Mike_P wrote:
Lesson to all is to think about the implications of being overly "keen" when it comes to contacting authorities about any shit like this. The end result, whether MHRA did not "suggest" he stops or not, is that Ben has stopped. Why? Because his feelings were hurt?....I doubt it. He must have sensed something...who are we to argue with that. In any case, with most stuff like this is that it is generally easier to ask for forgiveness than permission. And don't think that is naive. It just is. Scott |
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Title: Re: OUCH (UK) Post by Bob P on Dec 20th, 2005, 11:53am The "spin" is what I thought Mike, since I've seen it so many times before. For some people, their pet project is all they can see and if everyone else doesn't drop everything and champion their cause, then they're a bunch of a**holes. Keep up the good work OUCH-UK. |
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Title: Re: OUCH (UK) Post by seasonalboomer on Dec 20th, 2005, 12:52pm on 12/20/05 at 11:53:44, Bob P wrote:
....is this what the president meant after 9-11 when he said "you're either with us or against us"........ ;) scott |
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Title: Re: OUCH (UK) Post by Flash on Dec 20th, 2005, 1:08pm OK let's forego the spin and look at the facts (relating to the masx): 1) The masx is wonderful. Of this we are all aware. 2) Ben designed and built it. 3) While Ben and OUCH (UK) were still pals OUCH (UK) championed the masx. 4) Ben came out of the closet regarding using the shrooms. 5) OUCH (UK) delete the link to Ben's masx. 6) Ben comes on here a sticks the boot into OUCH (UK). 7) MOB calls up the MHRA to check any legality issues with the masx and asks them 2 questions. Somehow, during the course of those 2 questions Ben's name and address crops up. Ooops! 8) The MHRA decide to investigate Ben. 9) Ben halts supply of his masx. Mike has been implying two things that I for one consider unlikely: A) That despite the masx not being approved, MHRA are quite happy for Ben to continue supply of it in the meantime. Hey ho. Oh wait this doesn't smell quite right. B) That most of this was Ben's fault, and now he has thrown a strop and taken his toys away. Well hang on... if Ben were merely pissed off then why is he not posting on this thread? Are we expected to believe that Ben is such a sulker that he prefers silence to defending himself? No this doesn't smell quite right either. Yeah keep up the good work OUCH (UK). When is the Kudzu ban coming through BTW? |
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Title: Re: OUCH (UK) Post by Flash on Dec 20th, 2005, 1:14pm on 12/20/05 at 11:40:31, Mike_P wrote:
You know WOW this is an amazing co-incidence. A similar thing happened to me 19 months ago. Some anonymous caller was so keen to check the legality of possession of mushrooms, that they accidentally let me name and address slip to the poilce... who duly paid me a friendly visit. As it turns out the police were more interested in who had it in for me, than whether or not I had any mushrooms. (BTW for future reference THEY ARE STASHED IN THE TOP LEFT HAND DRAWER OF THE UNIT IN MY BEDROOM, just in case that helps.) Hey - da ya thunk it could be the same person ugh huh ugh huh ugh huh? You know this was right after the time that we had our first public ding ding. Funny that :) |
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Title: Re: OUCH (UK) Post by E-Double on Dec 20th, 2005, 1:38pm I would really like to think that people would not do that do someone/anyone who is trying to help us. I've been wrong before. I'm glad I have a Clustermasx. It's made a world of difference for me and I have not used any other abortive in over a month. Surely hope others do not get shut out from such a wonder. Peace! E 2 |
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Title: Re: OUCH (UK) Post by Changeling on Dec 20th, 2005, 1:57pm Well i am a member of ouch-uk adn have just (re)joined here, and i just think it is incredibly sad that the fighting there has spread to here too, it was putting me off there,,,, at least here it's only a smalll thing among many others ::).... ....on the whole ouch-uk has been helpful to me, but i am aware that some of the trustees and officers, i won't name names, there is enough name calling already,,,,anyway some of them seem to have a rather stuffy and legalistic view of their duties, which i believe sometimes gets in th way of their true purpose, which is of course to support th SUFFERERS in their quest for better treatments..... As for clustermasx, i got one from Ben before he stopped doing them , and i am very happy with it, much better than the one i tried to use before. .....th whole LSA/psilocybin thing is tainted by our (and your??) governments stupid and counterproductive 'war on drugs'........but ouch -uk as a whole is a diverse group as you would expect, th attitude, misguided in my opinion, of those at the top is not necessarily a reflection of how th majority feel. tony |
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Title: Re: OUCH (UK) Post by pubgirl on Dec 20th, 2005, 2:33pm on 12/20/05 at 13:14:28, Flash wrote:
Shame that every time you open your mouth Flash you can't just stop at reasoned arguments and information, you get carried away and seem to feel you have use innuendo and slander and vile accusations. You accused me of faking that I had CH which was despicable, but this above is even worse. I think you probably lost about 100 people who might have been supporting you here when you did this above and will be left with the usual die-hards who don't give a shit what you do or damage you cause or what lies you spread. I always understand activism to achieve ends and often participate but your brand of it here makes me sick to my stomach If you truly believe what you have written then I suggest you have just become the BEST advert ever for those who think hallucinogenics engender paranoia Wendy |
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Title: Re: OUCH (UK) Post by pubgirl on Dec 20th, 2005, 2:47pm and Flash- suggestions like that aren't even tolerated on HERE! I don't advocate banning people but by Christ I'd make an exception in your case |
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Title: Re: OUCH (UK) Post by catlind on Dec 20th, 2005, 2:48pm BobP, I don't know the full mechanics of the O2 masks on the current market, or whether Ben's is that much different. I have one, and it is entirely different to any others I've had. It has a face cushion for one, that seals around your nose and mouth (hence the reason there's no strap) ensuring no ambient air, it has the larger bag (but I used mine with the regular bag and it still got O2 working for me again when it had stopped) and I believe the valve is different, it is a one way valve each way, only allowing O2 in the mask, and an exit valve only to expel air. Again, I know very little on the mechanics of the various mask types, I just know that I've used 3 different types prior to Ben's, and O2 had simply stopped working for me until I tried Ben's masx. It now aborts a shadow in what feels like a blink of an eye, and will take a hit down rapidly. Cat |
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Title: Re: OUCH (UK) Post by Bob P on Dec 20th, 2005, 3:50pm Thanks Cat and the others who IM'd me. I just got a regulator from E-bay that will do up to 25 lpm. One of Ben's masks was next on the list. I hope this all gets cleared up soon so the sufferes can make use of Ben's mask. I'll get one or build one before my next cycle, that's for sure. |
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Title: Re: OUCH (UK) Post by Jonny on Dec 20th, 2005, 3:54pm Bens mask http://im1.shutterfly.com/procserv/47b5df01b3127cce9fbec13b5f3600000016108AZM2bNk5bM6 http://im1.shutterfly.com/procserv/47b5df01b3127cce9fbec138de0500000016108AZM2bNk5bM6 This is one of the prototypes he sent me, not sure if he made any major changes since then. You can either breath through the mask or the tube at the top. Once you stop sucking thru either the 02 stops flowing so you dont lose any. |
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Title: Re: OUCH (UK) Post by floridian on Dec 20th, 2005, 5:14pm Maybe the Clustermasx can be sold as "a work of art" instead of as a medical device. |
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Title: Re: OUCH (UK) Post by Flash on Dec 20th, 2005, 5:25pm on 12/20/05 at 14:47:32, pubgirl wrote:
Yes if I got banned from both sites then no doubt the whole thing could just be swept under the carpet. You are unable to make any properly reasoned arguments, and your sole agenda is to get this thread closed. Am I right? In the meantime would you please be so kind as to answer a question for me. A long time ago, in a thread far away, MOB told me that someone within the OUCH (UK) BOT was a judge, and that this person had ordained that it was illegal to talk about shrooms, and that shrooms threads would cause the charity to lose it's charter. Is the person he was referring to Mo Graham? Mo Graham from what I gather is a magistrate. Now I'm not sure what the US equivalent of a magistrate is, but in the UK it's certainly not quite the same as a judge. To the best of my knowledge a judge is someone with a law degree. A magistrate on the other hand is some fine upstanding pillar of the community that sits on on minor hearings such as vandalism, the dropping of litter, people not paying their TV license, etc. So my question is this: does Mo Graham have a law degree, and if not, is there another 'judge' who is a member of your BOT? Sorry about the timing BTW - athough it obviously didn't deter you with regards to Ben and his family. Another point I'd like to clarify while we are on the subject. You accuse me of claiming that YOU do not have CH. Try reading my previous post again and explain to me why on earth you would think I was referencing you? Just to recap, here are the main points of contention: 1) Your BOT are self appointed, and there are no means for your members to remove them. OUCH (US) has periodic elections, that keeps them honest, otherwise they might have ended up with a troll installed as dictator. 2) Your BOT have, and are still censoring information on the most promising alternative treatment. 3) Your BOT are doing nothing to press for proper scientific research on said treatment. 4) Your BOT will do nothing to lobby for dispensation in the event of said treatment becoming unlawful. 5) Your BOT (or member(s) of it) have been vindictive towards Ben, and possibly also in my case although we'll never know for sure. Ben invented/innovated on the O2 mask front and has helped a lot of people. I drew attentiont to the use of hallucinogenic substances to prevent/terminate CH cycles. Both Ben and myself are UK citizens. 6) You BOT have banned several UK CH sufferers from the OUCH (UK) organisation. In my case the ban came after 2 posts which were both deleted without any warning or notification, then 2 emails - the 2nd of which advised me not to attempt any future correspondance. My email did not contain anything that could be viewed as contentous or incongruous. Also banned is Richard who gamely appeared in The Guardian's feature on the alternaive treatment. In doing so he risked his job. I'd put to you that the individual efforts of Ben, Richard, and myself have done more to help people with CH than the combined efforts of the OUCH (UK) organisation. So um yeah, wouldn't it be great if we all got banned. Doh! |
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Title: Re: OUCH (UK) Post by Bob P on Dec 20th, 2005, 6:39pm I used to joke about paranoia being a side effect of alternate treatments. Now, all joking aside ........ |
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Title: Re: OUCH (UK) Post by Flash on Dec 20th, 2005, 7:45pm on 12/20/05 at 18:39:54, Bob P wrote:
It's OK - you're not being paranoid, the troll reference was directed at you. |
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Title: Re: OUCH (UK) Post by cazman on Dec 20th, 2005, 8:49pm i never thought id say this but the people that have brought this bullshit forward as in the rat selfish whinny pukes that reported it i hope you go into a permenant kip freaking 10 for the rest of you miserable little life. my 14 year old daughter has recived this mask and before it o2 didnt help her, well she called me today and she used it and in 7 min she killed the beast .it is worth 1 million times its cost and wieght. second i kick the shit outa anyone that calls me a druggy cause i use the seeds the end the hell i live in kiss off you pain loving freaks mabey you wanna support the criminal drug companies that dont mean i gotta . this is all bullshit and totally wrong those seeds have saved my life. i fully support clusterbusters and would go to the end of the earth to make that known and if any one has a problem with it go straight to hell . |
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Title: Re: OUCH (UK) Post by Mr. Happy on Dec 21st, 2005, 1:00am on 12/20/05 at 20:49:34, cazman wrote:
THAT's the spirit... on 12/20/05 at 20:49:34, cazman wrote:
If that ain't worth it, what is. on 12/20/05 at 20:49:34, cazman wrote:
Man, when you New Hampshirites get pissed off, you don't let go, do you. Just passin thru. RJ |
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Title: Re: OUCH (UK) Post by fubar on Dec 21st, 2005, 1:28pm I think Flash makes very valid points. The OUCH (UK) BoT is simply not operating in the best interests of their constituants, regarless of the egos and personal fights going on. They are allowed to continue this because they do actually help some of the CH sufferers. Others, they censor or ban. Any way you look at it, they are serving a subset of the whole, and we are justified in voicing our horror at the situation. Oh the horrors... this thread has bumped it's way to the top again. I wonder how the issue will be misdirected this time... |
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Title: Re: OUCH (UK) Post by cazman on Dec 21st, 2005, 6:15pm i wanna apoligize for blowing my top like that i just get emotional when control freaks think that there opinion is the only way it should be. i dont wish permanant ch on anyone but a kip 10 everyday might smartin them up. and yes we in new hampshire take live free or die very seriously for the most part thou we are layed back till stired up. happy holidays everyone. long live lsa!!!!! |
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Title: Re: OUCH (UK) Post by boybath on Dec 22nd, 2005, 9:13am fLASH Whilst I applaude your spirit you methods are alittle poor 1. Shrooms are as you are aware a class A drug that , for our world wide friends, is the same level as heroin, cocaine, and crack. Personally I think this is way out of order but the law is the law and if we want it to change we have to get smart and it will take time. If the site was found to be connected to the providing of shrooms it would be shut down and or persons prosecuted. 2. I think this is sad but there is no getting away from it, I beleive that they ought to be able to talk about it but the site has taken a desicion not to. Seeds are discussed and has been pointed out are subject to interpretation as to which side of the law they fall in. I beleive this to be the case as a member who is a cop is trying these at the moment and he has seeked advice from his employers. 3 As you are aware the litigation culture which has infussed from this side of the Atlantic in now endemic in the uk. When a person is worried about the legal side of devices he has to err on the side of caution. I appreciate you say bollox to that but the individuals involved can loose there house if they are sued and there arent many people who would make their kids homeless to fight the cause like you do. 4. For the record I am a family man from a familly of clusterheads, I care not about my own pain but worry what will happen to my kids in later years. I do wish I could get a cluster masx and I do used treatments that would not be approved by the authorities. BUT I do this with a bit of savvy and sense and do try to push it down other peoples throat ergo I have not the Police Raid my house. 5. I too think the uk ouch people can be a bit conservative at times but I unlike some people dont seem to be always right or know every thing. I do not know you but you do appear to come on here and not be persuaded by any arguments to the contrary. I applaude your commitment but that is nt the only thing you need in life good luck with the treatments. wishing you all avery merry PF xmas |
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Title: Re: OUCH (UK) Post by Margi on Dec 22nd, 2005, 10:09am AWESOME, post, Boybath! I wish I had your class and way with words. My sentiments, exactly! Flash, for the record, I do deeply respect your commitment and always will. edited to add: apparently my words above here have been interpreted to be condescending, as pointed out to me in an IM. ::) They're most certainly NOT meant to be. I am just agreeing with what Boybath says, and passing along my respect for Flash and the work he has done over the years to help clusterheads. |
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Title: Re: OUCH (UK) Post by zanychef on Dec 22nd, 2005, 11:45am on 12/22/05 at 09:13:21, boybath wrote:
sorry mate clusterbusters etc do not provide 'shrooms nor would they and discussing something illegal is not illegal in itself |
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Title: Re: OUCH (UK) Post by boybath on Dec 22nd, 2005, 3:41pm FIRST OF ALL LET ME SAY I BELEIVE CLUSTER BUSTERS PREFORM A USFuLL ROLE IN SOCIETY I really dont want to go there the vast majority of what Ive seen is he said she said. And doing the old gutter press trick of partial quoting. I mean come on rise above it the next line says. I think this is sad but there is no getting away from it, I beleive that they ought to be able to talk about it but the site has taken a desicion not to. I guess they take the veiw that if they allow discussing it the next step their members will do is give advice on how to collect .... it is the natural progression since no one is going to say yes they are really good but I wont tell you how to get them. can I draw you attention to section 4(2) of the misus of drugs act 1971 which is I agree very which statesit is an offence for any person.........or to be concerned in the production of a controlled drug. or as per the cps charging standards supply offences supplying a controlled drug - s.4(3)(a) of the Act being concerned in a supply - s.4(3)(b) of the Act; offering to supply - s.4(3)(a) of the Act; being concerned in an offer to supply - s.4(3)(c) of the Act this is the really floppyand scarey vague bit if your any way connected LOOK I AGREE A GOOD BRiEF WOULD PROBABLY GET YOU OFF BUT WHO WOULD WANT TO GO THERE NOT ME FOR ONE I do admire the cluster busters dedication but that is not the role of OUCH UK. That is the role of ClusterBusters and whilst MOB of ouch uk can be alittle dare I say it conservative and sometimes anal....hell they even make me roll my eyes from time to time. They are doing their best but they dont claim they are perfect and like all humans occaissionally they dont make, with the benifit of hindsight, the best descisions all the time. So they ERR on the side of caution so they cant be charged or sued or anything else. And I am objective and I can imagine that some of the abuse they have got is very nasty for what are good people trying to do as best as they can. And lets be honest if you want to find your way from OUCH to Cluster Busters way of life there is enough hints on the site to find your way there. take care keep fighting the fight but they are not your enemy they are just another sufferer with a different approach all the best Mad from BATH |
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Title: Re: OUCH (UK) Post by cazman on Dec 22nd, 2005, 4:54pm simple simple lsa seeds ---- works its been proven clustermasx ----- works its been proven why the hell should anyone suffer anymore with this horrible condition . if either one of theses cured cancer or aids and someone did whats been done to ben and the people at clusterbusters and tried to stop the suffers of those condition from getting either one of those the whole freaking world would be in a fit of rage. its a fact that people have taken thier own lives from the hell this condition puts them in dont they deserve to access to theses treatment arent theirs lives worth that. nodoby has to think that now. the shame is the people pulling the strings are more concerned with the money they would lose when we find something that is free or cheap to do what there fucking over priced drugs and warez cant do. they dont wanna help us they want our money, a peice of the action and keep there shareholders investing in thier poisons. and your goverments let them doit to us as long as they get thier peice of the action. and plese dont shoot off about how they just wanna make sure they are safe treaments "alieve" the OCT drug will turn your kidineys into rocks over time more that half the drugs out there will kill ya just as fast as a bullet yet our goverment turns the other way. so dont go there. never mind the fact if they ever do find a drug to cure aids ya better have alot of money cause if ya dont you will still die cause nothing in this world is free. |
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Title: Re: OUCH (UK) Post by boybath on Dec 22nd, 2005, 5:54pm your right both of those do seem to work fine. And I dont take the preventatives either for the same reasons that they will screw your body up. And alot of your ideas would work fine in an ideal world but that is not the world I live in. You come from a country with more lawyers per capita than any other country and they dont worry about the rights and wrongs of who they sue or convict they are just after the money. My country is also turning this way. Change this world by all means but dont take out yur aggressions on well meaning suffferers who give lots of their spare time to help other sufferers. what you have given me is alot of rhetoric but where is the reasoned logic to back it up. Most/some of the feelings you have most people can relate to i know i do but you have to apply it with guile to acheive change. The bull in the china shop approach acheives little and can allienate many. I really apreciate where you come from I just differ in my veiw of the world take care and have a merry PF xmas Mad |
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Title: Re: OUCH (UK) Post by cazman on Dec 22nd, 2005, 9:45pm a bull in a china shop so whats your approach sit back let a seriously currupt group of people that run everything make the decision for ya and when they screw up yell foul for a couple days till the general public forgets about it, not to sound crule 90 percent of the people on this planet have the attention span of a nat. you have to be a bull in china shop so they dont look out the window see a shinny object and go what were we talking about. man just pay attention for more than one second . the people in charge do not care about the small guy they work for$$$$$$$$$$$$$$ and that is there cause and religion and that will be what kills us all in the end. who told you lsa is bad for you body or the clustermasx must be nice to sit with a kip 8 waiting for permision to be pf by the pros, its not gonna happen till they can package it and make millions off it or ban it cause the top 1% DISAGREE WITH IT . that is reality thats the truth and if ya got the time to say something then you should have the time and the good sence to see it. ill bet ya that if they tell ben he cant make or sell them that within a year some multimillion dollar company will come out with the same damn thing made the same damn way and youll pay out your ass for it . they arent focusing on helping us we are to small in #'s its not profitable its reality if we dont help our selves it will not happen clusterbuster are on the frontlines of finding relief they are doing what merc and the big drug companies are not doing and in return they and we that use alternatives are called druggies looking for an excuse to get high . but ya know what thats ok im pf im happy im not in a closet screaming to nobody my daughter is not in pain and can get back to her school grades. you have a good time sitting there in painturning your insides into a chemical dump waiting for them to say its ok to live. i choose to live now nad so far with 3 months of treatments i feel great with ZERO side effects. if i added up all the money ive thrown away treating this condition with thier pills ,shots and what not i could take a couple years off from working and enjoy all the time i lost being in a closet praying for death , cost of treatments over the past three months hummmm $7.50 that is 45% of the cost of 1 relpax thats good for 1 attack. now why do you think they dont wanna us talking about alternatives. think about it!! |
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Title: Re: OUCH (UK) Post by Simon on Dec 22nd, 2005, 10:16pm So how precisely does that relate to this thread? Or anything that happens in the United Kingdom? Or for that matter anything resembling life on planet Earth? ...assuming that I was able to make any sense out of it whatsoever. Sorry, I've been here for all but eight days of this board's existence and I have never come such a load of crap in that entire time. But then again, I was brought up to expect civilised behaviour and coherent discourse. Perhaps I should just say "fuck off". S |
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Title: Re: OUCH (UK) Post by fubar on Dec 22nd, 2005, 11:06pm ya, we're the bad guys |
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Title: Re: OUCH (UK) Post by seasonalboomer on Dec 23rd, 2005, 10:19am on 12/22/05 at 22:16:28, Simon wrote:
...and just what are your expectations for discourse on an internet message board?...that everyone stay "on message" and provide only dispassionate, relevant input? by accident that sometimes happens, but if you've been around here as long as you say you have, aren't you use to it? rage on, rage on Cazman. this is the only forum that exists for all input to be displayed on the subject of CH. the blackmarket for info on CH. as it should be... rage on, rage on Cazman Merry Christmas and good cheer, Scott |
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Title: Re: OUCH (UK) Post by boybath on Dec 23rd, 2005, 2:50pm I beleive this can be explained by a class of cultures. We have a different way of doing things whilst I sort of appreciate your style in the UK its just not the done thing to go of on a rant if your not prepared to put up. In the case in question the people who are the anti christ who deserve crucifying and a permenat kip10. spend the vast majority of their time proactively working to help the awareness of the condition and providing an unbiased starting point for suferers. where as you beleive shouting at the wind is more productive. Its a cultural thing I just hope your not endemic of the rest of your continent. In my book actions do speak louder than mere words. ps I can provide a summation in sylabuls of lesss than 2. In fact I can reffer the learned Gentleman to the to the ulmimate post of my eloquent friend Simon.....with bells on lo0ve n kisses Mad |
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Title: Re: OUCH (UK) Post by cazman on Dec 23rd, 2005, 2:53pm hey simon happy holidays and a happy new years to ya ;) and if you want read this book, kevin trudeau "natural cures they dont want you to know about" thats if they alow you to read books like this in the uk better get permmsion first. |
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Title: Re: OUCH (UK) Post by CHTom on Dec 23rd, 2005, 4:06pm [quote author=boybath shouting at the wind is more productive. "ps I can provide a summation in sylabuls of lesss than 2." [/quote] Perhaps you should learn how to spell first: "lesss(?)"; "sylabuls(?)" [smiley=laugh.gif] |
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Title: Re: OUCH (UK) Post by Jonny on Dec 23rd, 2005, 4:29pm on 12/23/05 at 16:06:29, CHTom wrote:
Nice quote [smiley=laugh.gif] http://i3.photobucket.com/albums/y86/meena1/idiot.gif |
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Title: Re: OUCH (UK) Post by boybath on Dec 23rd, 2005, 4:42pm That would be due the addition of numerous glasses of red. the fact remains you have still not put forward a valid coherent point. In short quis a attero of viaticus vestri erudio eram quare dont vos vado fuck vestri sanctimonialis ut is videor solus res vestri brain est validus ut intellectum and your retort is? love n kisses Mad |
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Title: Re: OUCH (UK) Post by cazman on Dec 23rd, 2005, 9:27pm bathboy get alife will ya better yet go join back with your herd of sheeple and follow them into the closet and cry about being in pain , me im going out tonight pf and having blast thanks to lsa . nuf said fool. |
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Title: Re: OUCH (UK) Post by MJ on Dec 23rd, 2005, 10:56pm on 12/23/05 at 16:42:53, boybath wrote:
Translation from latin; anyone a to weaken of pertaining to a journey your to polish was wherefore dont you go fuck your nun when this to be seen alone occurrence your brain is mighty when to understand. Brilliant simply brilliant. No wonder everybody cant just get along. MJ |
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Title: Re: OUCH (UK) Post by Kevin_M on Dec 23rd, 2005, 11:13pm on 12/23/05 at 16:42:53, boybath wrote:
The fact or valid coherent point you have made by a message not undertandable is that you prefer to be incoherent to others without a discernable valid point in the last message, then invite sharp, retaliatory, and contradictary return. The logic of your reasoning fails me but I'll take it as a terse, consistent opinion on the issue. I guess that's where some people have said, "excuse my French." |
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Title: Re: OUCH (UK) Post by Chuffy on Dec 26th, 2005, 6:12am Quote:
Lets try and get this back on topic shall we. Just found this thread and am absolutely blown-away, gobsmacked, shocked and stunned and amazed!!! As I'm sure many of you know my views on CULT (UK) but this is unfuckingbelievable, how do these people sleep at night? |
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Title: Re: OUCH (UK) Post by Kevin_M on Dec 26th, 2005, 8:24am on 12/26/05 at 06:12:27, Chuffy wrote:
The possible good intentions may have been that UK OUCH is an avid advocate of oxygen and would have liked to fully endorse Ben's masx due to its excellent results augmenting oxygen usage. The fallout is the length of time for approval, availabilitiy in the meantime, his consequences IF he may empathetically continue supplying, and if he will be scooped on design. Problems seem to outweigh any good intensions presently. I like Cat's first post and will take that as advocasy in action. The problems she posts are real concerning the issue, there were good things in the works which need to be worked out. I'm sticking my neck out attempting to summarize, so other opinions can say I'm comprehending this inaccurately and they are welcome. For the time being, I'll understand the voice of Cat's first post, motivation with good intensions and an idea that are meeting a difficult situation, which we need to pull together on what is the reality now to be overcome. |
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Title: Re: OUCH (fUcKed up) Post by dennisoc on Dec 27th, 2005, 7:11am Regarding persons who have helped Clusterheads in the past...think you are involved in helping them now...are or are not clusterheads: I don't care if you are jesus fucking christ...if you now withold treatment or information about treatment or defend those who do...you are sleeping with the Beast and deserve his worst fucking. I'm so glad to see this thread. When DJ called a halt to a similar one on the "chat" board, I pulled my name from the board in disgust at him joining the censorship...stayed gone 5 minutes...official member of the "Hello/Goodbye" club now. I guess you could get banned here too Flash...but that crucifiction gig has been proven to be great for publicity. love den |
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Title: Re: OUCH (UK) Post by seasonalboomer on Dec 27th, 2005, 10:29am 3 1/2 minutes...... I got to use Ben's Clustermask for the first time yesterday when I was hit by something that felt like a CH hit after running. I went in, used the mask for 3 1/2 minutes and came out, to which my wife said, "is that what that mask can do for you?" Enuff said by me. Thank you Ben. Rage on against the system on this one. Your mask is the cat's pajamas!!!!! ;;D --- Scott |
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Title: Re: OUCH (UK) Post by Chuffy on Dec 27th, 2005, 1:19pm A big pisser for me, and a few other people no doubt, is that buying one of Ben's masks was on my New Year 'to do' list, thanks for that OUCH (UK) >:( |
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Title: Re: OUCH (UK) Post by dennisoc on Jan 9th, 2006, 1:36pm bump Let noone be without full knowledge and access to all Cluster treatments. den |
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Title: Re: OUCH (UK) Post by Beastfodder on Jan 11th, 2006, 7:02am Can we move on from ranting? I've stayed away till I learnt more - and do think there's a middle ground now. Nothing's perfect. Ouch UK said it could have handled the mask business better, but rather than these people being the spawn of Satan they're mostly overworked volunteers and sufferers simply motivated to help fellow CH sufferers. I've posted about my success with alternatives on the board - and (some of) the posts are still there. The new message board still has alternatives listed (of the seeds variety) and even a post on Albert Hoffman's big birthday which referenced Andrew Sewell's work on CH @ Harvard with LSD and psilocybin. Thing is before Xmas when their board last fell over the alternative remedy section (seeds) had more views by an order of magnitude than just about any other section. As long as I'm posting there the information will get out to UK sufferers to make their own minds up. Of course I'd like to see links to the clusterbusters website on there now - but if this Harvard stuff gains traction and Peter Goadsby gets more enthusiatic on record it's getting more likely to happen. As long as Clusterbusters keeps its No 1 Google ranking as the alternative CH therapy - people will find it. I did. |
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Title: Re: OUCH (UK) Post by vig on Jan 11th, 2006, 10:12am good work to all! keep fighting the good fight. everyone will benefit from the free flow of information. |
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Title: Re: OUCH (UK) Post by SteveY on Jan 11th, 2006, 11:05am Free flow of information is exactly what we are NOT getting on OUCH UK. You wouldn't believe it. Steve |
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Title: Re: OUCH (UK) Post by Roxy on Jan 11th, 2006, 11:47am It seems that ranting and raving and trying to make changes in OUCH UK doesn't work.....why don't the members that aren't happy just LEAVE! Join OUCH US. We can sure use some active members. Show your displeasure by deserting in droves. Start an underground email campaign, actively encourage members to withdraw their memberships and join an OUCH site which welcomes any and all participation......and allows discussion about all topics which might remotely help this condition. Just my stupid thoughts on the matter. Roxy |
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Title: Re: OUCH (UK) Post by Beastfodder on Jan 11th, 2006, 3:55pm on 01/11/06 at 11:05:07, SteveY wrote:
I think every poor sod who's suffered with these threads knows this by now. |
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Title: Re: OUCH (UK) Post by Flash on Jan 19th, 2006, 2:25pm FYI - I am no longer a member of Clusterbusters as I would not like my outspoken criticism of OUCH (UK) to reflect badly on that organisation. *** The BOT OUCH UK will be delighted to note that this is my last post on this (or any CH related) subject. You win Mo! Keep up the good work :) *** This is how the situation has concluded: OUCH (UK) has issued a statement this time prohibiting all talk of LSA, RC seeds, HWB seeds, and MG seeds in addition to mushrooms and LSD. They also (inadvertantly) acknowledged that 1/3rd of their membership do not have Internet access. The have stated that if 50 people were to compile detailed DAILY diaries of their LSA usage over a 3 year period, then they'd pass these on to Goadsby to review, and depending on the outcome they might change their minds and support this treatment. LMAO. Where do they expect to get 50 people with LSA experience from, when nobody is permitted to mention LSA??? They have repeated their trick of sending a letter to the Home Office, and posting the reply along with their interpretation of that reply, yet ommitting the original letter. They've done likewise with reference to MS charities, although it should be noted that cannabis is now a legal a prescribed drug for MS in the UK... thanks mainly to MS campaingers, so that statement is somewhat null and void. You may also be interested to know that OUCH UK had 1600 members. Given that a third of them do not have Internet access then that's AT LEAST 500 PEOPLE THAT OUCH UK IS WITHOLDING INFORMATION ON A PROMISING TREATMENT FROM. What if one (or more) of those 500 people were to take their own life? Word on the street is that their next step will be to ban all proponents of this treatment from their membership. So, back to square one. To reiterate (just one last time), my personal issues with this are: 1) The BOT at OUCH UK are self appointed, and there is no means of deselecting them unless they choose to resign. There are no elections. 2) OUCH UK pertains to be the official mouthpiece for CH in the UK. Yet they do nothing to support this promising treatment, and if anything they appear to do everything to undermine it. 3) They have banned their own members. 4) As has been demonstrated, there is no legal issue whatsoever with discussing this treatment on an Internet forum. This is a matter of fact not a matter of opinion. 5) As has also been previously demonstrated, charities in the UK already exist to promote the use of illegal drugs, and to campaign for changes in the law. Campaigning for research on these substances, would not risk OUCH UK's charitable status. That is also a matter of fact not a matter of opinion. Now, to all you lurkers from the UK, who contact me by phone, email, or PM... it's time to stand up and be counted. I refuse to do this anymore. Fight your own battles. DJ - please delete my account like I previously PM'd asking you to. I really mean it. I have nothing constructive left to offer the world of cluster headaches. Thank You. |
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Title: Re: OUCH (UK) Post by Peppermint on Jan 19th, 2006, 2:41pm Flash - on 01/19/06 at 14:25:40, Flash wrote:
I will digress from your statement just to say this: You have put a lot of informational posts on the board. Asking DJ to delete your account will make it hard for those who are interested in your posts and findings, and cannot find their voice to express it as many do not, to access your posts. If you want to leave, then so be it, but to pull the rug out from all those that believe in or are interested to know your methods..... look in your heart and think that one over. PFDAN's to all, Pep |
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Title: Re: OUCH (UK) Post by Bob P on Jan 19th, 2006, 3:06pm Flash - just click on "Profile" at the top of the page, scroll to the bottom of your profile page and click on "delete user". It's good to do for oneself. |
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Title: Re: OUCH (UK) Post by nani on Jan 19th, 2006, 7:56pm I'm with Patti, Flash. Stick around so those who need your knowledge can get it. Onward and upward... :) |
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Title: Re: OUCH (UK) Post by Sandy_C on Jan 19th, 2006, 8:24pm Flash, I don't give a rats a$$ what OUCH UK says or does. All I know is that you have given me so much great information that is helping right now, this very minute. I've dosed with rc seeds trying to ward off a cycle, as you said it might help. Well, Goddamnit! It's working. Since you've helped me, I think you need to stick around so that others can be helped too. Just my [smiley=twocents.gif] [smiley=twocents.gif] And that's four, just in case you can't count. Sandy |
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Title: Re: OUCH (UK) Post by fubar on Mar 14th, 2006, 7:56pm I'm just bumping this to: 1) find out if anything has changed wrt OUCH UK 2) to irritate those who would keep it the same as in the past any news? -Shawn |
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Title: Re: OUCH (UK) Post by Linda_Howell on Mar 14th, 2006, 8:20pm I'm waiting to see if anyone can answer Roxys question above. I thought it was a good one. Linda |
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Title: Re: OUCH (UK) Post by Jonny on Mar 14th, 2006, 8:31pm Just a waste of bandwith rehashing this! |
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Title: Re: OUCH (UK) Post by fubar on Mar 14th, 2006, 8:44pm No offense Jonny, but I worry about our brothers and sisters in the UK that are subjected to to this kind of righteous information denial that OUCH (UK) perpetrates on them. They suffer as much as we do, they *are* worth talking about, and if anybody should be bitching about it, we should. That's my opinion, and luckily I am free to express it here. And bandwidth never gets 'wasted' in the process anyway. People here are free to read it or not. In my opinion, this topic is WAY more relevant to CH than other things we talk about here. -Shawn |
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Title: Re: OUCH (UK) Post by Lizzie2 on Mar 14th, 2006, 8:52pm As far as I know, people had been able to talk about things a lot more openly on OUCH UK, but I haven't been on the site in awhile. I know there were some active threads when I was there before about alternatives, though. Carrie |
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Title: Re: OUCH (UK) Post by MJ on Mar 14th, 2006, 8:59pm on 03/14/06 at 20:44:24, fubar wrote:
Amen Fubar. Seems to me that more understanding and knowledge has come out of threads like this than many others. Some see them as counterproductive but I find them otherwise. Miss ya Flash and appreciated your knowledge in the past. |
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