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Pinkfloyd
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Psilocybin Study Update
« on: May 25th, 2004, 2:58am » |
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Update on the Psilocybin Study
MAPS has added the Psilocybin research for Cluster Headaches to their website.
http://www.maps.org/research/index.html#PSILOCYBIN
More information will be added within the next week. The project is also mentioned in their most recent MAPS email news, that is sent to all their members and is listed again on their home page.
The study is also mentioned in the MAPS Bulletin that is at the printers. When it comes out in a few weeks, it will be archived on the MAPS website.
This begins their, and our, public appeal for additional funding. MAPS has already begun mailing information to potential donors. In addition to coordinating the entire project and handling all the paperwork submissions, they are also donating all their time and their overhead costs of the project. This is a substantial donation by MAPS.
It is also my pleasure to announce the identity (as it were) of the donors that came forward and invested not only a large sum of cash but also a large vote of confidence in this research. Had this donation, in this sum, not been made, we would have been far removed from the point of progress we now find ourselves.
Marsha and David W. (Marsha posts here under the name maria9) have made a $50,000.00 donation that has already been received by MAPS. For those of you that know Marsha and Dave or discover their last name at MAPS or elsewhere, I (and they) would appreciate all due respect for their privacy and not posting it on this or any public message board. Had they been able to make this completely anonymous, they would have. Since it can not be so, we would prefer their names not to come up on google searches.
We at Clusterbusters can not thank them enough for not only the donation, but the confidence they have shown in Clusterbusters, the research, and the treatment possibilities in the future.
If you would, or know anyone that would, like to make a donation, a link can be found currently at:
http://www.maps.org/cgi-bin/thatsanorder_LE
You do not have to join MAPS. All donations should be marked as being specifically intended for use in the cluster headache study only. "Cluster Headache Study" in the notes on paypal or checks mailed directly, will be sufficient to guarantee that all funds will only be used for this research.
We will shortly be added to a priority funding page that is currently being reworked on the MAPS site to include this project.
If you know of anyone that might be interested in making a substantial donation or wishes to discuss funding, they should contact Rick Doblin directly at MAPS. His email address can be found on the linked page.
Dr. Halpern, Dr. Sewell and Rick Doblin are in receipt of over 300 pages of detailed anecdotal reports on the treatment. They are currently reviewing the data and information. It's first use will be for publishing a paper in a peer reviewed journal(s). These collections of anecdotal testimonials will be culled through and a representative sample will be contacted for follow-up and further evaluation. If anyone is interested in being interviewed, and have not yet given me your contact info, let me know and the information will be forwarded to the doctors. They will then select the people to be interviewed.
There is still much work to be done and a long road ahead. I want to thank everyone that has had a part in bringing us to this point. I promise to post a more detailed thank you to those that have done so much and have supported us. It deserves its own place in the archives. Thank you all very much.
Please keep those surveys coming!!!
BobW
Clusterbusters
www.clusterbusters.com
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Bob P
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Re: Psilocybin Study Update
« Reply #1 on: May 25th, 2004, 8:40am » |
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Cool deal.
Thanks to Marsha and Dave, sincerely hope it is money well spent, for the sake of all clusterheads.
PS - How's the golf game Marsha?
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Leesa
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Re: Psilocybin Study Update
« Reply #2 on: May 25th, 2004, 2:16pm » |
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This is good news!!! Thanks Pink and Marsha & David W. Keep up the great work yall!!!
Leesa 
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Cerberus
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Re: Psilocybin Study Update
« Reply #3 on: May 25th, 2004, 5:20pm » |
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Kudos! 
Ramon
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Donna
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Re: Psilocybin Study Update
« Reply #4 on: May 25th, 2004, 5:45pm » |
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Proud of what you are doing and impressed with your progress.
Don't forget that some of knew you way back when.......
Keep up the good work.
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JDH
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Re: Psilocybin Study Update
« Reply #5 on: May 25th, 2004, 10:47pm » |
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VERY impressive.
Huge props to Marsha & David...and you too Pink.
Jim
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maria9
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Re: Psilocybin Study Update
« Reply #6 on: May 26th, 2004, 5:16pm » |
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Hi,
Thanks to all of your replies and interest in this study. As some of you may know I am an episodic cluster sufferer that has dealt with this horror for over 30 years now. My cycles used to occur once a year, whereas the last two cycles I have had remission periods up to 4-5 years. Last year my husband and I made a verbal commitment to MAPS to fund a clinical trial, when this last cluster cycle hit this Spring, it reinforced in my mind how important it is to find an effective treatment for this disorder.
Like many of you, each cycle I tried various medications to attempt to eliminate the headaches, some medications were complete failures, some years a medication seemed to help, then the next year it did nothing to help, some years a medication would seem to work for awhile, and then the beast found a way around it. I know you all are familiar with this scenario. What convinced my husband and I to support this research is the high levels of success that have been reported using the alternative treatment and I really felt that it would take a fellow sufferer to step forward to get the research going.
I don't think this alternative treatment is for everyone, nor do I think it is necessarily the magic bullet for curing all cases of cluster headaches. Because CH is such a complex disorder and poorly understood I think there are always going to be some cases that are refractory to treatment.
The money that we donated will only cover the initial clinical trial that will involve 8 to 12 subjects. The next part of the research will be to conduct a larger study I think involving 30 subjects. I hope that many of you will consider a tax deductible donation to MAPS in order to help raise funds for the larger study. I know that it may seem daunting to raise the kinds of funds needed for the larger study, but remember the journey of a thousand miles begins with a single step.
Marsha
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UN_SOLVED
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Re: Psilocybin Study Update
« Reply #7 on: May 26th, 2004, 5:32pm » |
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on May 26th, 2004, 5:16pm, maria9 wrote:| The money that we donated will only cover the initial clinical trial that will involve 8 to 12 subjects. The next part of the research will be to conduct a larger study I think involving 30 subjects. |
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Anyone know who will be part of this study or how those individuals will be picked ?
Unsolved
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I'm STILL alive ?
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BlueMeanie
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Re: Psilocybin Study Update
« Reply #8 on: May 26th, 2004, 5:48pm » |
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THANK YOU Marsha & Dave. You are wonderful people.
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Roxy
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Re: Psilocybin Study Update
« Reply #9 on: May 26th, 2004, 6:25pm » |
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Marsha and Dave, thank you so much for what you have given.
Bob...thank you for the hard work you have expended, and still are, for the sake of all sufferers.
Tracey
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ave
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Re: Psilocybin Study Update
« Reply #10 on: May 26th, 2004, 6:58pm » |
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One tiny problem.
If you don't live in the USA you cannot donate...
Stupid form does not recognize my phone number (well, of course not) so the form is invalid and I cannot contribute.
Sorry guys.
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Flounder
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Re: Psilocybin Study Update
« Reply #11 on: May 26th, 2004, 11:12pm » |
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(((((((((((((((((Marsha and David)))))))))))))))))
You guys are amazing!!!
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Pinkfloyd
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Re: Psilocybin Study Update
« Reply #12 on: May 27th, 2004, 1:26am » |
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on May 26th, 2004, 6:58pm, ave wrote:One tiny problem.
If you don't live in the USA you cannot donate...
Stupid form does not recognize my phone number (well, of course not) so the form is invalid and I cannot contribute.
Sorry guys.
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Thanks for trying Ave...
I'll contact MAPS and check into the problem.
PF
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"Nothing is so firmly believed as what we least know."
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[Michel de Montaigne
www.clusterbusters.com
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Turts
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Re: Psilocybin Study Update
« Reply #13 on: May 27th, 2004, 6:45am » |
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Thank you all,
we are truly grateful for your donations of both time and money!!
I for one, am quite willing to test this alternative method of prevention, however availability is an issue I am trying to overcome.
Turts
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'I'm very brave generally,' he went on in a low voice: 'only today I happen to have a headache.' (Lewis Carroll)
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ave
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Re: Psilocybin Study Update
« Reply #14 on: May 27th, 2004, 7:02pm » |
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update on donations from afar...
Although maps rejected my form twice, it apparently accepted the donation twice over! at least I got 2 emails a few seconds apart thanking me for donating.
But: I wonder how they are going to collect. Because the form was rejected, I never got to fill out my Paypal password...
Somebody will need to do some rethinking there.
(Oh, the doubling of the donation is not a problem.
I just got paid for a horribly big product, that kept me chained to the galley benches for 6 months... Let's spend that money on something useful, right?)
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maria9
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Re: Psilocybin Study Update
« Reply #15 on: May 27th, 2004, 11:41pm » |
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Oops, Bob P,
I forgot to answer your question about golf. I went from 5.5 to a 10.1 USGA handicap. I lost some distance as well as direction during the last cycle. What can you expect after not getting a good night of sleep for 7 weeks and having over 130 CH's? Thanks for asking and I hope you are well.
Marsha
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"All you have to do is the best you can. A high wave comes, a crashing wave comes, a gentle swell follows. Whatever comes, stay in your boat. And enjoy the ride. And row." Peggy Noonan
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Pinkfloyd
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Re: Psilocybin Study Update
« Reply #16 on: May 28th, 2004, 12:49am » |
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on May 27th, 2004, 7:02pm, ave wrote:
Although maps rejected my form twice, it apparently accepted the donation twice over!
Somebody will need to do some rethinking there.
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Oh, I don't know, sounds like its working GREAt to me!!!
LOL
Just kidding Ave. I suggest you write directly to MAPS and ask them to clarify if any donation went through. I would but wouldn't know any personal info they could look at to check.
It should say though on your paypal account. My guess is it didn't go through but you got a computer generated thank you. We can never say thank you enough!!
Here is what Rick Suggests until they get the kink worked out.
Fill in a fake USA phone number, which would be...
XXX (three digit area code)-XXX-XXXX (seven digit number) and then put your correct phone number in the "comments" section. The same place you designate the donation for the psilocybin/cluster headache study.
Something like: 555-867-5309
Thanks very much Ave.
PF
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"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
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Pinkfloyd
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Re: Psilocybin Study Update
« Reply #17 on: May 28th, 2004, 1:51am » |
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on May 26th, 2004, 5:32pm, UN_SOLVED wrote:
Anyone know who will be part of this study or how those individuals will be picked ?
Unsolved
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Yes I do.
The criteria parameters will be discussed and decided upon by Dr.'s Halpern and Sewell, MAPS and Clusterbusters.
Based up many things, which will be decided upon during the time the protocol is written. Data collected from the surveys will help in this stage. (data, not names)
Volunteers will then be advertised for, and asked to complete a questionaire and the research team will make the final selections.
PF
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"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
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maria9
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Re: Psilocybin Study Update
« Reply #18 on: May 28th, 2004, 8:28pm » |
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shameless bump, because I think this study could potentially positively affect the lives of numerous cluster sufferers. Ave, thank you for your donation, if it got through, you may be the first, I hope other sufferers will also support this study.
Marsha
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"All you have to do is the best you can. A high wave comes, a crashing wave comes, a gentle swell follows. Whatever comes, stay in your boat. And enjoy the ride. And row." Peggy Noonan
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maria9
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Re: Psilocybin Study Update
« Reply #19 on: May 31st, 2004, 12:22am » |
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,
Marsha
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"All you have to do is the best you can. A high wave comes, a crashing wave comes, a gentle swell follows. Whatever comes, stay in your boat. And enjoy the ride. And row." Peggy Noonan
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Bob P
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Re: Psilocybin Study Update
« Reply #20 on: May 31st, 2004, 11:48am » |
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Marsha,
I just focus on the distance. Better to be long and in trouble than to be short and in trouble.
Thanks again for your unselfish giving.
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| « Last Edit: May 31st, 2004, 11:48am 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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maria9
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Re: Psilocybin Study Update
« Reply #21 on: Jun 1st, 2004, 8:19pm » |
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Good Advice Bob P,
My last two rounds have been 4 over and 7 over par, so it is coming back. But it has definately taken me a longer time to recover from this last CH cycle than when I was younger. I do know that the mushroom treatment is not necessarily a magic bullet or cure, but at the very least we will be getting some publicity about this very obscure disorder and I really do believe that there is an answer/cure to this. I really do hold on to the hope that there is something out there to irradicate these horrific headaches and I really hope that the small step my husband and I took in supporting this research will lead us towards a potential cure.
Marsha
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"All you have to do is the best you can. A high wave comes, a crashing wave comes, a gentle swell follows. Whatever comes, stay in your boat. And enjoy the ride. And row." Peggy Noonan
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Flounder
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Re: Psilocybin Study Update
« Reply #22 on: Jun 3rd, 2004, 9:41am » |
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maria9
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Re: Psilocybin Study Update
« Reply #23 on: Jun 3rd, 2004, 8:30pm » |
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"All you have to do is the best you can. A high wave comes, a crashing wave comes, a gentle swell follows. Whatever comes, stay in your boat. And enjoy the ride. And row." Peggy Noonan
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Pinkfloyd
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Re: Psilocybin Study Update
« Reply #24 on: Jun 3rd, 2004, 8:44pm » |
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on May 27th, 2004, 7:02pm, ave wrote:
... Let's spend that money on something useful, right?) |
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Ave,
I want you to know that I wouldn't do this for just anyone, but for you...
Just got back from a 2500 mile round trip to MAPS to check on your donation(s). How's THAT for personal service with a
Your donation did not go through either time and the letters you received were computer generated when you hit submit. It appears there is a problem when you (anyone) enters an 11 digit phone number. Your CC was not charged. I discussed the problem with the webmaster and it was being worked on when I left yesterday's meeting.
We (clusterbusters study) has been added to their priority funding page.
anyone that decides to donate, please do remember to mark it as restricted for cluster headache research in the notes section.
http://www.maps.org/cgi-bin/thatsanorder_LE
thanks,
PF
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"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
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