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seasonalboomer
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Re: OUCH (UK)
« Reply #50 on: Dec 20th, 2005, 10:28am » |
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on Dec 19th, 2005, 4:48pm, Margi 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?
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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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Bob P
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Re: OUCH (UK)
« Reply #51 on: Dec 20th, 2005, 10:48am » |
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Hey Bob, this is posted on the UK site:
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.
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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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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
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Flash
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on Dec 20th, 2005, 10:19am, Pinkfloyd 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. |
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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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Flash
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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"
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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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thomas
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Re: OUCH (UK)
« Reply #54 on: Dec 20th, 2005, 10:57am » |
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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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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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Bob P
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Re: OUCH (UK)
« Reply #55 on: Dec 20th, 2005, 11:03am » |
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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:| To stop the rumor mill from propagation further misinformation in this matter I will say this. Yes it was ME that contacted these authorities. I asked them two questions and received two answers. The questions were about members liability and OUCH (UK)'s liability. This information is what led us to find a way of passing on information to ALL members without putting the charity at risk. I know from the countless people who I have spoken to about this masx that it is very, very effective. But no matter how effective it is the BOT cannot CHANGE the circumstances surrounding it (although we have tried). |
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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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| « Last Edit: Dec 20th, 2005, 11:10am by Bob P » |
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
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seasonalboomer
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Re: OUCH (UK)
« Reply #56 on: Dec 20th, 2005, 11:19am » |
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on Dec 20th, 2005, 11:03am, Bob P wrote: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:
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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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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Mike_P
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Re: OUCH (UK)
« Reply #57 on: Dec 20th, 2005, 11:40am » |
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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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seasonalboomer
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Re: OUCH (UK)
« Reply #58 on: Dec 20th, 2005, 11:51am » |
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on Dec 20th, 2005, 11:40am, Mike_P wrote: In retrospect I have to admit we have subsequently not handled the negotiations very well with Ben. .........................
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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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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Bob P
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Re: OUCH (UK)
« Reply #59 on: Dec 20th, 2005, 11:53am » |
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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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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
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seasonalboomer
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Re: OUCH (UK)
« Reply #60 on: Dec 20th, 2005, 12:52pm » |
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on Dec 20th, 2005, 11:53am, Bob P wrote:| 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. |
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....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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Flash
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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!
 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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| « Last Edit: Dec 20th, 2005, 1:09pm by Flash » |
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Flash
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on Dec 20th, 2005, 11:40am, Mike_P wrote:| I accept that maybe we were a bit too keen to confirm the legality of the mask |
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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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| « Last Edit: Dec 20th, 2005, 1:18pm by Flash » |
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E-Double
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Re: OUCH (UK)
« Reply #63 on: Dec 20th, 2005, 1:38pm » |
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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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I can't believe that I have to bang my
Head against this wall again
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Space in-between them
Gonna take a breath and try again.
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Changeling
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Re: OUCH (UK)
« Reply #64 on: Dec 20th, 2005, 1:57pm » |
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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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| « Last Edit: Dec 20th, 2005, 7:03pm by Changeling » |
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pubgirl
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Re: OUCH (UK)
« Reply #65 on: Dec 20th, 2005, 2:33pm » |
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on Dec 20th, 2005, 1:14pm, Flash 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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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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| « Last Edit: Dec 20th, 2005, 2:38pm by pubgirl » |
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Calling all Brits (and anyone else- all welcome) Join OUCH UK and help us fight CH together
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pubgirl
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Re: OUCH (UK)
« Reply #66 on: Dec 20th, 2005, 2:47pm » |
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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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catlind
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Re: OUCH (UK)
« Reply #67 on: Dec 20th, 2005, 2:48pm » |
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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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Bob P
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Re: OUCH (UK)
« Reply #68 on: Dec 20th, 2005, 3:50pm » |
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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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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
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Jonny
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Re: OUCH (UK)
« Reply #69 on: Dec 20th, 2005, 3:54pm » |
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Bens mask
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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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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floridian
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Maybe the Clustermasx can be sold as "a work of art" instead of as a medical device.
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Flash
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on Dec 20th, 2005, 2:47pm, pubgirl wrote: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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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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Bob P
New Board Hall of Famer
Shut up Bob!
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Posts: 3436
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Re: OUCH (UK)
« Reply #72 on: Dec 20th, 2005, 6:39pm » |
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I used to joke about paranoia being a side effect of alternate treatments.
Now, all joking aside ........
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Flash
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on Dec 20th, 2005, 6:39pm, Bob P wrote:I used to joke about paranoia being a side effect of alternate treatments.
Now, all joking aside ........ |
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It's OK - you're not being paranoid, the troll reference was directed at you.
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cazman
New Board Veteran
if ya dont like it take a walk
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Posts: 223
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Re: OUCH (UK)
« Reply #74 on: Dec 20th, 2005, 8:49pm » |
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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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