Author |
Topic: OUCH (UK) (Read 7416 times) |
|
Pinkfloyd
New Board Hall of Famer
comfortably numb
  
 
Gender: 
Posts: 1406
|
 |
Re: OUCH (UK)
« Reply #25 on: Dec 19th, 2005, 5:55pm » |
 Quote  Modify
|
on Dec 19th, 2005, 5:26pm, Margi wrote:
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.
|
|
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
|
|
 IP Logged |
"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
|
|
|
tommyD
New Board Hall of Famer
Anything not impossible is compulsory.
Gender:
Posts: 525
|
|
Re: OUCH (UK)
« Reply #26 on: Dec 19th, 2005, 6:19pm » |
Quote Modify
|
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
|
| « Last Edit: Dec 19th, 2005, 6:24pm by tommyD » |
IP Logged |
www.clusterbusters.com
|
|
|
pubgirl
New Board Old Timer
The next person who calls it a migraine eats teeth
Gender: 
Posts: 396
|
|
Re: OUCH (UK)
« Reply #27 on: Dec 19th, 2005, 6:24pm » |
Quote Modify
|
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  . 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
|
| « Last Edit: Dec 19th, 2005, 6:27pm by pubgirl » |
IP Logged |
Calling all Brits (and anyone else- all welcome) Join OUCH UK and help us fight CH together
|
|
|
Beastfodder
New Board Old Timer
O2 and clusterbusters - naturally
Gender:
Posts: 294
|
|
Re: OUCH (UK)
« Reply #28 on: Dec 19th, 2005, 6:53pm » |
Quote Modify
|
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
|
| « Last Edit: Dec 19th, 2005, 6:55pm by Beastfodder » |
IP Logged |
O2 and clusterbusters - naturally
|
|
|
fubar
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 1933
|
|
Re: OUCH (UK)
« Reply #29 on: Dec 19th, 2005, 7:17pm » |
Quote Modify
|
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 Dec 19th, 2005, 5:26pm, Margi wrote: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. |
|
|
|
IP Logged |
"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
|
|
|
pubgirl
New Board Old Timer
The next person who calls it a migraine eats teeth
Gender:
Posts: 396
|
|
Re: OUCH (UK)
« Reply #30 on: Dec 19th, 2005, 7:40pm » |
Quote Modify
|
on Dec 19th, 2005, 7:17pm, fubar wrote:Margi,
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?
|
|
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!!! 
Off to bed giggling now. Thanks Fu!
Wendy
|
|
IP Logged |
Calling all Brits (and anyone else- all welcome) Join OUCH UK and help us fight CH together
|
|
|
fubar
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 1933
|
|
Re: OUCH (UK)
« Reply #31 on: Dec 19th, 2005, 7:51pm » |
Quote Modify
|
OMG Wendy... I didn't mean on the Board of Trustees... I meant on the board as in 'not banned'.
|
|
IP Logged |
"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
|
|
|
pubgirl
New Board Old Timer
The next person who calls it a migraine eats teeth
Gender:
Posts: 396
|
|
Re: OUCH (UK)
« Reply #32 on: Dec 19th, 2005, 8:01pm » |
Quote Modify
|
Thank the Lord for that Fu, thought you'd lost your marbles for a moment there, still enjoyed the visions I had though 
W
but then I have a mightily warped sense of humour
|
| « Last Edit: Dec 19th, 2005, 8:14pm by pubgirl » |
IP Logged |
Calling all Brits (and anyone else- all welcome) Join OUCH UK and help us fight CH together
|
|
|
mrs mac
New Board Veteran
I love YaBB 1G - SP1!
Gender:
Posts: 213
|
|
Re: OUCH (UK)
« Reply #33 on: Dec 19th, 2005, 9:06pm » |
Quote Modify
|
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
|
|
IP Logged |
|
|
|
fubar
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 1933
|
|
Re: OUCH (UK)
« Reply #34 on: Dec 19th, 2005, 9:29pm » |
Quote Modify
|
on Dec 19th, 2005, 9:06pm, mrs mac wrote: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 |
|
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
|
|
IP Logged |
"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
|
|
|
mrs mac
New Board Veteran
I love YaBB 1G - SP1!
Gender:
Posts: 213
|
|
Re: OUCH (UK)
« Reply #35 on: Dec 19th, 2005, 9:32pm » |
Quote Modify
|
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
|
|
IP Logged |
|
|
|
fubar
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 1933
|
|
Re: OUCH (UK)
« Reply #36 on: Dec 19th, 2005, 9:39pm » |
Quote Modify
|
Don't ever go away Sandra, and I mean that sincerely.
|
|
IP Logged |
"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
|
|
|
mrs mac
New Board Veteran
I love YaBB 1G - SP1!
Gender:
Posts: 213
|
|
Re: OUCH (UK)
« Reply #37 on: Dec 19th, 2005, 9:42pm » |
Quote Modify
|
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
|
|
IP Logged |
|
|
|
catlind
CH.com Alumnus
New Board Hall of Famer
Taz taught me the cluster dance
Gender:
Posts: 3433
|
|
Re: OUCH (UK)
« Reply #38 on: Dec 19th, 2005, 10:19pm » |
Quote Modify
|
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
|
|
IP Logged |
A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
|
|
|
Pinkfloyd
New Board Hall of Famer
comfortably numb
Gender:
Posts: 1406
|
|
Re: OUCH (UK)
« Reply #39 on: Dec 19th, 2005, 11:56pm » |
Quote Modify
|
on Dec 19th, 2005, 10:19pm, catlind wrote: 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 |
|
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
|
|
IP Logged |
"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
|
|
|
Mr. Happy
CH.com Alumnus
New Board Hall of Famer
If I can do it, it ain't art.
  
Gender:
Posts: 2217
|
|
Re: OUCH (UK)
« Reply #40 on: Dec 20th, 2005, 12:07am » |
Quote Modify
|
on Dec 19th, 2005, 11:56pm, Pinkfloyd wrote:
My guess is that he may be trying to find out what he can and can not say without getting into more trouble. |
|
Ding!
on Dec 19th, 2005, 11:56pm, Pinkfloyd wrote:| 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. |
|
Ding again, and bugger off with your capitalistic thoughts, Bob.
I saw him first.
RJ
|
|
IP Logged |
May those who don't want any
Have memories of never getting any.
|
|
|
Pinkfloyd
New Board Hall of Famer
comfortably numb
Gender:
Posts: 1406
|
|
Re: OUCH (UK)
« Reply #41 on: Dec 20th, 2005, 12:40am » |
Quote Modify
|
on Dec 20th, 2005, 12:07am, Mr. Happy wrote:
Ding again, and bugger off with your capitalistic thoughts, Bob.
I saw him first.
RJ |
|
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
|
|
IP Logged |
"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
|
|
|
Mr. Happy
CH.com Alumnus
New Board Hall of Famer
If I can do it, it ain't art.
Gender:
Posts: 2217
|
|
Re: OUCH (UK)
« Reply #42 on: Dec 20th, 2005, 1:18am » |
Quote Modify
|
on Dec 20th, 2005, 12:40am, Pinkfloyd wrote:| I see no reason to slow down if we need to secure a free flow of oxygen!! |
|
Cheesus, man. And I thought _I_ was devoted.
"A chicken in every pot, and a Clustermasx in every garage."
A Goal is a Goal.
RJ
|
|
IP Logged |
May those who don't want any
Have memories of never getting any.
|
|
|
catlind
CH.com Alumnus
New Board Hall of Famer
Taz taught me the cluster dance
Gender:
Posts: 3433
|
|
Re: OUCH (UK)
« Reply #43 on: Dec 20th, 2005, 1:24am » |
Quote Modify
|
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
|
| « Last Edit: Dec 20th, 2005, 1:25am by catlind » |
IP Logged |
A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
|
|
|
Mike_P
New Board Newbie
I love YaBB 1G - SP1!
Gender:
Posts: 31
|
|
obRe: OUCH (UK)
« Reply #44 on: Dec 20th, 2005, 4:04am » |
Quote Modify
|
Quote:| They may not have told him to stop, just that if he doesn't, he would be prosecuted....semantics |
|
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
|
|
IP Logged |
|
|
|
Flash
Guest
|
on Dec 20th, 2005, 4:04am, Mike_P wrote:| 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. |
|
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!
|
| « Last Edit: Dec 20th, 2005, 5:41am by Flash » |
IP Logged |
|
|
|
Simon
New Board Veteran
Gender:
Posts: 123
|
|
Re: OUCH (UK)
« Reply #46 on: Dec 20th, 2005, 6:22am » |
Quote Modify
|
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.
|
| « Last Edit: Dec 20th, 2005, 6:25am by Simon » |
IP Logged |
|
|
|
Flash
Guest
|
on Dec 20th, 2005, 6:22am, Simon wrote:| that ultimately has to be up to the board of trustees in terms of advice they have received |
|
They have no right to censor a treatment.
on Dec 20th, 2005, 6:22am, Simon wrote:| 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. |
|
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 Dec 20th, 2005, 6:22am, Simon wrote:| Perhaps we should let people who think that say it on the OUCH (UK) board |
|
I would love to say that on the UK board, but last time I tried they banned me.
on Dec 20th, 2005, 6:22am, Simon wrote:| They feel that by going carefully (yes they are a conservative bunch) they can achieve more in the long run. |
|
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 Dec 20th, 2005, 6:22am, Simon wrote:| 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? |
|
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 Dec 20th, 2005, 6:22am, Simon wrote:| Suggest six people who might be good, and I myself will pass those names on to the relevant people. |
|
You could start with Peter, Ben, and Richard.
on Dec 20th, 2005, 6:22am, Simon wrote:| As to them having clusters - which is monumentally irrelevant |
|
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 Dec 20th, 2005, 6:22am, Simon wrote:| Cut out the personal abuse |
|
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 Dec 20th, 2005, 6:22am, Simon wrote:| 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. |
|
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 Dec 20th, 2005, 6:22am, Simon wrote:| That does not give anyone the right to be as abusive as this |
|
I am completely justified in calling those twits, twits. Jesus you should see me when I get really abusive!
on Dec 20th, 2005, 6:22am, Simon wrote:| and consequentially makes some sort of rapprochement unlikely should the time come when the Board feels confident enough to expand their deliberations. |
|
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 Dec 20th, 2005, 6:22am, Simon wrote:| 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? |
|
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 Dec 20th, 2005, 6:22am, Simon wrote:| 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. |
|
True.
|
|
IP Logged |
|
|
|
Flash
Guest
|
on Dec 20th, 2005, 6:22am, Simon wrote:| What the fuck do you think they spend their time doing? |
|
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.
|
|
IP Logged |
|
|
|
Pinkfloyd
New Board Hall of Famer
comfortably numb
Gender:
Posts: 1406
|
|
Re: obRe: OUCH (UK)
« Reply #49 on: Dec 20th, 2005, 10:19am » |
Quote Modify
|
on Dec 20th, 2005, 4:04am, Mike_P wrote:
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 Mike |
|
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
|
|
IP Logged |
"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
Remove
test rss