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Pinkfloyd
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Clusterbusters visit Boston
« on: Oct 27th, 2004, 2:11am » |
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This past weekend, Oct. 21-24, a team of Clusterbusters visited the facilities that will host the psilocybin/lsd clinical trials and met with the doctors & administrators that are working hard on making this a reality.
At this point, a feasable timetable seems to point towards the first legal administration of psilocyin to treat cluster headaches taking place around this time next year. We have much to do to make that happen but the entire team is dedicated to relieve pain in cluster sufferers as soon as humanly possible.
Dr. Andrew Sewell is currently collecting additional information from people that have already used the treatment (both successfully and unsuccessfully) via phone calls and faxes. This additional information, most of which revolves around past medication use and some basic information is very important in the process.
The faster we get this information, the faster we can get this study operational. It is essential that people that have been assigned case history numbers, and want to help, contact Dr. Sewell via email so he can call you and speak with you. This does not mean you will be in the program, it means we will be able to offer this treatment to someone else that is currently suffering and is waiting for this trial to take place.
If you have your case number and Dr. Sewell's email address, please write to him with your contact information.
If you do not know your number or his email address, please write to me and I will supply you with either or both.
We are working with Dr's Sewell, Halpern and Doblin in designing the tools needed to begin the selection process for admission into the trials. I expect this to be available shortly. For those waiting for this trial to begin, you may want to begin gathering your medical records or at least begin to find out what you will need to do to be able to send them to Dr. Sewell. No need to write me, or anyone, now about admission into the study. I will give additional details as they occur.
Due to the uncertainty of cluster cycles, this will most likely be a "rolling" admission into the study, meaning they will be ready and waiting for you when you go into cycle.
The protocol design work (the hows, whys, whos, whats) is in process and in draft form at this point so I can not comment on too many details only because they are still being discussed. I will give more updates as different points are finalized.
I can say that the more funds we can find, the more people and expenses we can cover. So please feel free to click on the following link if you'd like to help.
http://www.maps.org/support.html
and remember to mark "for cluster research" in the comments.
peace~
PF
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"Nothing is so firmly believed as what we least know."
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[Michel de Montaigne
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vig
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Re: Clusterbusters visit Boston
« Reply #1 on: Oct 27th, 2004, 9:46am » |
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FANTASTIC!
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eileen
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Re: Clusterbusters visit Boston
« Reply #2 on: Oct 27th, 2004, 10:07am » |
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How do I get involed in this? I have tried mushrooms on my own and it seems to be the only thing that works for me. I am running low on them and have had a break through headache took more and they are gone but I am afraid they will be back. I would do anything to stop these things. Please let me know how to help.
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manana
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Re: Clusterbusters visit Boston
« Reply #3 on: Oct 27th, 2004, 11:39am » |
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Very very cool. You guys & gals have done so much to get this far in such a short time (by research & development standards). Please keep us posted!
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miapet
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Re: Clusterbusters visit Boston
« Reply #4 on: Oct 27th, 2004, 5:55pm » |
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*YAY* *happy dance* Thanks for working so hard, and for making this happen!!!!!
CLUSTERBUSTERS ROCK!!!!!!!!!!!!!!!!!!!!!!!!
*positive light and energy*
miapet
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Clusterbusters Rock
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Kris_in_SJ
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Re: Clusterbusters visit Boston
« Reply #5 on: Oct 27th, 2004, 8:09pm » |
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Thank You .... Thank You!
My feet are doing a happy dance for the possibilities this study might offer.
I'm holding nothing but positive thought!
Many, many hugs to Clusterbusters,
Kris
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D
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Re: Clusterbusters visit Boston
« Reply #6 on: Oct 30th, 2004, 2:02am » |
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Excellent Post! Busters Rock!
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Cluster Busters Rock !
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Flash
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Re: Clusterbusters visit Boston
« Reply #7 on: Oct 30th, 2004, 9:21am » |
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Now that we have come this far I think it's time there was a button on the menu of the LHS of this site with the word Clusterbusters on it.
It's also time that OUCH got behind this in a big way. It's ridiculous that we have a clinical trial in the offing IN SPITE of the 'official' CH charity. OUCH's lack of enthusiasm for this treatment is a major hinderence. Don't doubt that when push comes to shove, and we face a major political battle, the fact that the 'official' CH charity does not openly support this project will be cast up and used as an argument against the treatment.
Personally I think that OUCH should redeem itself by working at raising funds for this research. I realise that this is not what OUCH is currently set-up to do, but IMO this would be a more productive use of it's resources.
The bottom line is that we stand a far better chance of producing a legal, effective treatment that's low cost and readily available on prescription if EVERY clusterhead gets behind us.
If everyone started treating themselves with shrooms (and the sip method is viable for pretty much everyone), and then donated the money they'd saved on medication and treatments to this trial... we'd be there in no time!
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Flash
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Re: Clusterbusters visit Boston
« Reply #8 on: Oct 30th, 2004, 9:22am » |
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LOL what a total bastard I am!
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maria9
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Re: Clusterbusters visit Boston
« Reply #9 on: Oct 30th, 2004, 10:22am » |
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Flash,
You brought up some interesting points.
To my knowledge, this is the first cluster headache research ever that was initiated by cluster headache sufferers and I agree it would be beneficial to have the backing and support of OUCH.
And then there is this from the OUCH mission statement:
"We encourage, support, and and participate in research to develop new and improved therapies and practice for treating cluster headaches."
"We will strive to be a catalyst for finding a cure for cluster headaches by encouraging and participating in research into the condition."
Hmmm??.... I would be interested in hearing from some of the OUCH board members on this. I don't believe that I have heard a definitive answer one way or another from the OUCH board regarding this research.
Marsha
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mynm156
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Re: Clusterbusters visit Boston
« Reply #10 on: Oct 30th, 2004, 5:07pm » |
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 Rock On PF.
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miapet
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Re: Clusterbusters visit Boston
« Reply #11 on: Oct 30th, 2004, 5:23pm » |
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Great points (both Flash and Marsha). It would be wonderful if all CH sufferers would stand together on this (even if they aren't ready/willing to try the treatment right now). If we stand together we are much stronger! Si Se Puede!!!
*positive light and energy*
miapet
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Clusterbusters Rock
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forgetfulnot
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Re: Clusterbusters visit Boston
« Reply #12 on: Oct 31st, 2004, 6:49pm » |
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Rock on Bob, wish I could help with the $ but that fcking dog is eating my lunch.
Lee
PS Send me a email, my system crashed and I lost all that stuff.
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| « Last Edit: Oct 31st, 2004, 7:00pm by forgetful » |
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D
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Re: Clusterbusters visit Boston
« Reply #13 on: Oct 31st, 2004, 10:19pm » |
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Busters Rock!
Case # 115 & miapet will always be grateful for the dedication and kindness all Busters have shown; being supportive in everyway possible.
Peace & Positive Energy
D
PS Great job!
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Cluster Busters Rock !
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magman
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Re: Clusterbusters visit Boston
« Reply #14 on: Nov 1st, 2004, 2:34pm » |
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on Oct 30th, 2004, 10:22am, maria9 wrote:Flash,
You brought up some interesting points.
To my knowledge, this is the first cluster headache research ever that was initiated by cluster headache sufferers and I agree it would be beneficial to have the backing and support of OUCH.
And then there is this from the OUCH mission statement:
"We encourage, support, and and participate in research to develop new and improved therapies and practice for treating cluster headaches."
"We will strive to be a catalyst for finding a cure for cluster headaches by encouraging and participating in research into the condition."
Hmmm??.... I would be interested in hearing from some of the OUCH board members on this. I don't believe that I have heard a definitive answer one way or another from the OUCH board regarding this research.
Marsha |
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This is one OUCH BoD member that is coming out stronlgy in support of the CB/Harvard study.
PF's message at the top of this thread was quoted and placed on the OUCH site this morning. See http://www.clusterheadaches.org/members/cgi-bin/yabb/YaBB.cgi?board=new_ main_board;action=display;num=1099321119 for details.
Kind regards and peace,
-dan
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manana
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Re: Clusterbusters visit Boston
« Reply #15 on: Nov 1st, 2004, 4:16pm » |
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I'm sure others will comment but, I would like to thank this Bod member for his support. manana
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BillyJ.
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Re: Clusterbusters visit Boston
« Reply #16 on: Nov 1st, 2004, 5:38pm » |
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In this BoD members opinion,if we do not support this
research in every way we can,then we are NOT following
the mission statement.If we do not follow that,,,,well
then the whole org. is kind of pointless isn't it?
**This is my personal opinion and is not intended to be
a statement of the views of OUCH**
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cathy
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Re: Clusterbusters visit Boston
« Reply #17 on: Nov 1st, 2004, 6:11pm » |
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It's great to come back and read that some real research into a real possible alternative treatment is maybe going to be going on next year, in the middle of a bad cycle with Wes I don't give a flying duck who does what, the fact that someone is doing something makes me smile when there's little to smile about right now.....lets not start slinging mud amongst ourselves lifes to short.
Cathy
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Flash
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Re: Clusterbusters visit Boston
« Reply #18 on: Nov 1st, 2004, 6:11pm » |
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On the OUCH board BobP has replied:
"I trust you have some official document showing that this is official/legal research (FDA approval or whoever approves this kind of thing) and not just acting on someones word?"
I quote from the MAPS page:
"This project is being directed by Dr. John Halpern and Dr. Andrew Sewell, Harvard Medical School, and is currently in the early protocol design stage."
Pinkfloyd was sent several copies of a letter from Harvard Medical School that verifies this. It's laid out on beautifully engossed official Harvard headed paper. Pinkfloyd thoughfully mailed one of these to me in recognition of my contribution. I believe Pinksharkmark also recieved one. It's better presented than my own Degree Certificate LOL. I've framed it and hung it on my office wall.
I have also personally exchanged telephone calls, emails, and faxes with Dr Sewell. His faxes arrived on Harvard headed fax paper from a Harvard fax machine.
Several clusterbusters recently met with Dr's Sewell and Halpern in person, and also Rick Doblin from MAPS. They toured the Harvard Medical School Facility.
Some people may consider MAPS to be a controversial organisation but it's also a reputable one and a non-profit making one.
How much proof does OUCH need?
Time to shit or get off the pot IMHO!
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| « Last Edit: Nov 1st, 2004, 6:28pm by Flash » |
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Flash
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Re: Clusterbusters visit Boston
« Reply #19 on: Nov 1st, 2004, 6:27pm » |
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on Nov 1st, 2004, 6:11pm, cathy wrote:| lets not start slinging mud amongst ourselves lifes to short. |
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Unfortunately the sooner we get any 'issues' out of the way, the better chance this trial has of leading to a viable treatment.
OUCH is seen to speak for ALL sufferers of cluster headaches. It is the official mouthpiece of cluster headache sufferers.
At present any politician , lawyer, judge, reporter, etc contacting OUCH requesting it's official position on this treatment will get exactly what response???
Therefore I'd personally feel a lot more comfortable if I knew categorically that we had OUCH on-side... for OUCH to officially recognised and support this as a legitimate and promising treatment.
At present, most chapters of OUCH fail to officially reflect, the views of the vast majority of clusterheads, with regard to this treatment. That MUST change. FAST!
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Flash
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Re: Clusterbusters visit Boston
« Reply #20 on: Nov 2nd, 2004, 8:15am » |
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On the ongoing question of the legailty of this study on the OUCH message board, and the old red herring of jeopardising OUCH's charitable status...
I doubt very much if McLean Hospital / Harvard would undertake any study illegally. They have THEIR status to consider also.
AND please note that MAPS has a non-profit making charter, and they sail a lot closer to the wind than we're advocating!!!
ALSO there are many MS charities in all countries that openly back cannabis research without endangering their status. In fact without the involvement of those MS charities I very much doubt that the cannabis research would be taking place at all. In fact this has probably helped our cause a little too since they've already crossed that bridge.
Here in the UK the Home Office has once again officially confirmed the legality of selling fresh mushrooms. The police actually raided some vendors, but the authorities declined to press any charges and later issued a statement that the vendors activities were in fact lawful. In fact the only place in the UK that fresh shrooms are not deemed lawful is within the OUCH (UK) community. Any progress on that front?
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Bob P
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Re: Clusterbusters visit Boston
« Reply #21 on: Nov 2nd, 2004, 9:47am » |
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I realize you have your agenda Flash and that you feel it is justified. I think OUCH is just as justified in their wanting to be sure they aren't crossing any lines that they shouldn't be. OUCH has legal cousel and I'd hope that they will get verification there before they they leap.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
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magman
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Re: Clusterbusters visit Boston
« Reply #22 on: Nov 2nd, 2004, 10:08am » |
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Not to worry.
OUCH is getting behind a proposed clinical trial that must be FDA/DEA approved. Without such approval, there is no study. Therefore, there is no liability in supporting a "proposed clinical trial" or "the trial itself", once approval is received.
Respectfully,
-dan
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D
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Re: Clusterbusters visit Boston
« Reply #23 on: Nov 4th, 2004, 11:11pm » |
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I agree with jmin 100%
Peace & Positive Energy
D
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Cluster Busters Rock !
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Mark C
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Re: Clusterbusters visit Boston
« Reply #24 on: Nov 5th, 2004, 6:50pm » |
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on Nov 2nd, 2004, 10:08am, Magman wrote:Not to worry.
OUCH is getting behind a proposed clinical trial that must be FDA/DEA approved. Without such approval, there is no study. Therefore, there is no liability in supporting a "proposed clinical trial" or "the trial itself", once approval is received.
Respectfully,
-dan |
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I agree completly.
Mark
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