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New Message Board Archives >> Jan-Mar 2004 >> Official Clinical Trial of ClusterBusters Underway
(Message started by: Flash on Mar 7th, 2004, 10:32am)

Title: Official Clinical Trial of ClusterBusters Underway
Post by Flash on Mar 7th, 2004, 10:32am
Bob Wold (pinkfloyd) of Clusterbusters.com has given PinkSharkMark and myself the honor of making a joint announcement of historic import to cluster headache sufferers.

Clinical studies on the effectiveness of psilocybin and LSD in the prevention and treatment of cluster headaches will soon take place!

Bob's tireless efforts have finally born fruit. Below is an excerpt from the confirmation letter received by Bob from Rick Doblin Ph.D., the president of the Multidisciplinary Association for Psychedelic Studies (MAPS):



Quote:
Dear Bob,

As the President of the Multidisciplinary Association for Psychedelic Studies (MAPS), I'm writing to confirm our agreement to work together to conduct FDA-approved research into the use of psilocybin and LSD in the treatment and prevention of cluster headaches. This research will be coordinated by MAPS and will be directed by Dr. John Halpern, McLean Hospital, Harvard Medical School, in association with Dr. Andrew Sewell.


Many of you have read on this board over the years of the spectacular successs clusterheads have achieved with psilocybin (the active compound in magic mushrooms) and of the equal success of the few LSD experimenters from whom we have reports. We express our heartfelt thanks to all those who had the courage to post their experiences with these controversial -- and in most countries, illegal -- substances in this public forum. Without the convincing evidence gathered from so many reports, there would have been no possibility whatsoever of enlisting any credible researcher -- let alone researchers connected with Harvard Medical School -- to embark upon a clinical study presenting as many challenges as this one does.

We would also like to thank DJ for allowing a full and frank discussion of this therapy to be carried out for so many years in this forum, and a special thanks to Ueli for investing countless hours in compiling his archive of links to every post ever made on this bulletin board regarding the use of psilocybin and LSD. Ueli's archive made the task of presenting convincing case histories to the interested parties a manageable one.


Bob will be releasing further details as the project unfolds, including posting additional information regarding time frames.  He will also answer the question, "When & where do I sign up?"

Thanks also to PinkSharkMark for drafting the bulk of this posting.

HERE WE GO!


Flash

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by 357Mag on Mar 7th, 2004, 10:39am
Big Congrats to all involved!!!

A new idea is often met with great resistance. Overcoming the obsticles makes announcements like this mean so much more.

Looking forward to further info as it becomes available.

Thanks for you dedication to our affliction.
-dan

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by Jimmy_B on Mar 7th, 2004, 10:48am
Excellent!!!

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by jonny on Mar 7th, 2004, 10:55am
Sounds like the ball is finally rolling, Flash....Good for you all that got it started....A fucking plan coming together....YES!!!!! ;;D

..............................jonny

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by Sean_C on Mar 7th, 2004, 11:50am
WOW..........Thats great news guys

;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D

Sean

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by Flounder on Mar 7th, 2004, 12:00pm
;;DYes Indeedio ;;D

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by fubar on Mar 7th, 2004, 12:38pm
This is truly incredible news.

I am highly skeptical that this treatment would ever become legal, but it's certainlyt a step in the right direction.  As someone who suffered CH for 18 years, and 3 years chronic, I know full well how effective the clusterbuster method can be.  I have now been blissfully happy for almost 6 months.  Even if my CH comes back, the fact that I now know what works for me is a great comfort.  Before, I used to worry about the onset of a cycle.  Then I went chronic, and all I could think about was various creative ways to kill myself.  Now, I know CH will never rule my life again.  NEVER.

This country has such a stigma attached to this type of treatment, it's never going to be accepted to the point of being legalized.  I just can't see that happening.  However, this research will provide answers for a lot of people who need them, and that can't be a bad thing.

-Fu

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by Flounder on Mar 7th, 2004, 12:53pm
Fubar,

Glad to hear this treatment has worked so well for you. It's a great feeling to not fear the Beast anymore!

Finding out why this treatment works so well and developing a new prescription Med that we can all take legally is what this is all about. Legalization is not the objective here.

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by catlind on Mar 7th, 2004, 1:19pm
Congratulations on seeing all your hardwork get you to this point!

Cat

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by t_h_b on Mar 7th, 2004, 1:27pm
WOW!!!!  [smiley=sayyes.gif]

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by kissmyglass on Mar 7th, 2004, 1:33pm
Congrats!

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by Giovanni on Mar 7th, 2004, 1:43pm
Painfree John saying Congradulations!! ;;D

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by Giovanni on Mar 7th, 2004, 1:44pm
oops..........Congratulations !

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by ShariRae on Mar 7th, 2004, 1:56pm
Yayyyyyyyy!!!
Congratulations to all those involved for all your hard work & dedication.
Huggs
Shari

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by Belle on Mar 7th, 2004, 2:04pm
That's terrific news guys.  Snaps to your hard work!

Belle
::)

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by Alan on Mar 7th, 2004, 2:12pm
It's about time!  It's like modern-day approval for use of something that has been used effectively for centuries.  Oh well.....

And a MASSIVE thank you to all who have pushed to get it to this point.  

Kudos!
Alan

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by broomhilda on Mar 7th, 2004, 2:13pm
Congrats!!!!! ;;D ;;D ;;D ;;D

Andrea

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by Linda_Howell on Mar 7th, 2004, 2:38pm


   I know how much hard work went into this by msny and I think is fantastic news.

   I would give my firstborn to have seen Bob's face when he opened that letter.   :o

LindaH

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by Melissa on Mar 7th, 2004, 3:17pm
Way to go and Congratulations!!!!  Perhaps this is just the 1st step on a road to LEGAL medical use!  I'll be keeping my toes, fingers, knees and eyes crossed!  Anyhow, THANK YOU for all your hard work Bob and everyone else who has participated in moving this cause forward.

:)mel

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by miapet on Mar 7th, 2004, 8:25pm
YAY!!!!  thank you all for all your hard work!!!

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by bobkip on Mar 7th, 2004, 10:07pm
Thank all of you so very much. Hope this bears fruit.
Kip

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by Mark C on Mar 7th, 2004, 10:22pm
http://www.drfeller.com/Mark/01.gif


http://fusionanomaly.net/psychedelic.gif (http://www.clusterbusters.com)


Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by JDH on Mar 7th, 2004, 10:37pm
Come in here, dear boy, have a cigar.
You're gonna go far, fly high,
You're never gonna die, you're gonna make it if you try;they're gonna love you.
Well I've always had a deep respect, and I mean that most sincerely  
The band news is just fantastic, that is really what I think.
Oh by the way, which one's Pink?  ;)
And did we tell you the name of the game, boy
we call it Riding the Gravy Train.
We're just knocked out!

WTG Clusterbusters!!!

Jim



Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by DJ on Mar 7th, 2004, 11:04pm
EXCELLENT NEWS!

Way to go guys & gals!

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by Flounder on Mar 7th, 2004, 11:20pm
Great Post JDH,

I Know Bob's Grinnin from Ear to Ear! ;;D

Mitch

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by Kevin_M on Mar 7th, 2004, 11:27pm
I know nothing of this method of treatment because personally I have had a biased aversion to mind altering drugs, so have not kept in step.  
 I do applaud the efforts it would have to take to make a case for approval of research in such an intriguing area of drugs.  Approval means money will be thrown at a worthy cause which to my surprise, will benefit us.  
 It is the approval of research to market bridge of which the length of is unknown.  However, work will be started and I am grateful that in the future this may come to fruitation for cluster sufferers.  We don't get many positive hopes likes this.  An improvement in drugs for us is an important as well as overdue windfall.
 I will be very much enthralled to see an eventual outcome arise to our benefit.  This is worthy of it, I need to pray more.

Kevin M

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by Mastifflvr28 on Mar 7th, 2004, 11:36pm
WHOO HOOOO AND A FUCKENEH CLUSTERBUSTERS!!!!

Good job ALL!!
Mast

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by Charlie on Mar 7th, 2004, 11:43pm
This is, like you know, way cool.

Nice going kids. If it works out, it would be nice if it isn't like what Bill Maher says about medical marijuana: Legal to own but pretty illegal to obtain. ( ::)

Nice job everybody. 8)

Charlie

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by Eeyore on Mar 8th, 2004, 12:51am
Me thinks me just shat meself....
Hey Flash, I hope you don't mind if I copied your post and showed everyone over at Nansnook (here (http://www.nansnook.com/forum/index.php?s=2b22a0450fbac5340bd81442755a2484&act=ST&f=21&t=18803&st=0#entry200481)) and the Shroomery....well actually, the Shroomery is down, but they will know soon. Thank you so much for the good news!
- Eeyore -

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by Callico_Kid on Mar 8th, 2004, 2:13am
Thank you so very much to all involved.  I have looked at the growing amount of anecdotal evidence from fellow clusterheads and have wanted to try, but due to my daughter's position with the Police Dept. would not use it for her sake.  This gives hope that I had frankly given up on.  Thanks again.

Jerry

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by Pinkfloyd on Mar 8th, 2004, 2:33am
For an up to the minute reporting on this subject, please see my post in the Treatments/Medications Section.

Thank you all for the kind words. I will be checking and replying in the other section. I just get myself into trouble over here! ;-)

PF

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by Woobie on Mar 8th, 2004, 7:15am
OH MY GOODNESS!!!!


CONGRATULATIONS to everyone !!!!


Get it??  PINK for PinkFloyd and PinKSharkMark.... (i am so VERY clever!)


way to go guys!!!
Tina :-*

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by Bob P on Mar 8th, 2004, 9:39am
Floyd,
Read your other post and just want to be clear.  

The FDA has not approved this research yet?

What you have is an agreement with MAPS to conduct this research if they can get the FDA to approve the protocol?

Seems to me we had this same agreement with MAPS a few years back, I think it was Rick who I was talking to then.  They would conduct the trials and provide the psilocybin if we could cough up $20,000.  It looks like you've found someone to front the money now but it is still a ways from being "FDA Approved Trials"?

Just don't want to see people get all worked up before it is warrented.  Are my interpretations correct?

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by fubar on Mar 8th, 2004, 10:38am
Bob,

I read it the same way.  They agree to coordinate FDA-approved research, but they don't say this specific study is FDA-approved yet.  I do think it's important people aren't misinformed, so it would be nice to know for sure if the FDA has actually approved something in this regard.

No matter what it's still a cool step.

-Fu

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by Tiannia on Mar 8th, 2004, 10:47am
Very Cool, Grats everyone who pushed this so hard.

Tia

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by Roxy on Mar 8th, 2004, 10:47am
FUCKENEH

Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by Pinkfloyd on Mar 8th, 2004, 2:11pm
Please view my response for BobP and Fu, et al.,over in the medications section.

PF

Title: Re: Official Clinical Trial of ClusterBusters Unde
Post by Flash on Mar 8th, 2004, 2:37pm
Sorry I fucked that up, as I interpreted the letter from MAPS incorrectly.  However... FDA approval is actually much closer than you'd expect.  I can't go into the details because A) I'm in a hurry, and B) They are still confidential, but watch this space.

Title: Re: Official Clinical Trial of ClusterBusters Unde
Post by thomas on Mar 8th, 2004, 2:41pm
Glad that you guys kept up the hard work, I know your reception at the old board was a little cold to say the least, but you all stayed with it and kept putting the word out.  You've really made a difference in a lot of people's lives that I care about, and I just want to express my thanks and well wishes.  WAY TO GO GUYS!!!!!!! ;;D

Title: Re: Official Clinical Trial of ClusterBusters Unde
Post by sherryberry on Mar 8th, 2004, 5:01pm
EXCELLENT!!   IF they can get FDA approval, with accredited researchers and funds... the element that actually helps the cluster sufferer could be isolated and then...we wouldn't have to worry about legality.  There are plenty of illicit drugs that are legal as long as they are used in an approved pharmeceutical compound.

This is a BIG step guys!  I hope OUCH is involved??

Sherry

PS...the first time I went for 2 years without a cluster cycle coincided with the time I did LSD recreationally a few times.  Since then, I have not done LSD but still enjoy a two year hiatus.


Title: Re: FDA has approved Clinical Trial of ClusterBust
Post by pinksharkmark on Mar 9th, 2004, 1:42am

on 03/07/04 at 23:04:21, DJ wrote:
EXCELLENT NEWS!

Way to go guys & gals!


It wouldn't have happened without your site, DJ -- and that's the honest truth.

You have always allowed a full and frank discussion of all aspects of this treatment, right from day one. You have never censored even one single post made on the topic, and that made all the difference.

I would never have come across Flash's story if you hadn't created and maintained this board. I'd still be bankrupting myself by paying full pop for Imitrex (no medical insurance, you see).

You have my deepest and most undying gratitude. Sincerely.

pinky

Title: Re: Official Clinical Trial of ClusterBusters Unde
Post by firebrix on Mar 9th, 2004, 4:23am
So true, pinksharkmark! So true.
Thank you DJ for all you do and the freedom to discuss alternative thinking.
firebrix

Title: Re: Official Clinical Trial of ClusterBusters Unde
Post by stevegeebe on Mar 9th, 2004, 6:33am
Good work folks.

Steve G

Title: Re: Official Clinical Trial of ClusterBusters Unde
Post by jminmilwaukee on Mar 9th, 2004, 9:17am
Ditto on the DJ thing. Without your efforts and the freedom you allow here, I would also still be without an acceptable treatment.

As a matter of fact, I had given all hope and resigned myself to O2 and Painkillers (not for pain but to maintain sanity) until Flash and Pinkshark interviened.

Another heart fealt THANK YOU to DJ!!!!!!

jmin

Title: Re: Official Clinical Trial of ClusterBusters Unde
Post by Margi on Mar 9th, 2004, 9:52am
Way to go, Pinky, Flash and all others.  I truly hope you do get FDA approval and this can go ahead.

Congratulations on all your hard work and perserverance through the flak.  You're truly pioneers in cluster research and, without you, a lot of folks here wouldn't have found their blessed pain freedom.  

Keep pluggin' along folks, this is a major hurdle cleared!

Title: Re: Official Clinical Trial of ClusterBusters Unde
Post by Elaine on Mar 9th, 2004, 11:47am
I just wanted to say I am pround of you Bob.
Way to go. It may not be tomorrow but it will happen!!!
Like Margi said keep plugging!

Title: Re: Official Clinical Trial of ClusterBusters Unde
Post by Not4Hire on Mar 9th, 2004, 10:10pm
...finally draggin' my butt into this thread.... but I hope you know:

Bob, Mark, Craig, Mich, 'brix, Tracey, and MY list goes on and on.... (don't think I don't know who ya are....but when ya start with NAMES--ya always forget some body).....

FUCKENEH!

...I read the CB board every day.... the energy you all have dedicated is truly amazing.... I hope all the work bears fruit....  it certainly helped my *dog* get over *his* headaches.....

Steve(N4H)

Title: Re: Official Clinical Trial of ClusterBusters Unde
Post by SommelierCH on Mar 10th, 2004, 4:02am
I just dosed at 12:22 am PST, March 10, 2004. Someone at work heard me talking about this study and offered to donate to my research, she had them in her freezer, Chocolate Fudge squares. FINALLY. This town is knee deep in everything except this natural gift.

I should be a good subject:  I’m in a weird Semi-Cluster cycle right now (last 3 weeks, it’s not TMJ). Alcohol sets it off within 15 mins. It comes every night 1 1/2 hours after I fall asleep. O2 can kill the Shadow creeping up during the day. But It attacks at night, just like my Clusters. But it’s not my Cluster. I kill this one easily with 1100mg aspirin, 650mg Acet., 70mg caffeine, i.e. 2 packets of Goodys Headache Powder. Go figure.

1:am Gotta go. I’ll be back.

The great work you have done, is already helping someone


Whooa. really gotta go. Thank you, Thank you, Thank you.
David J.

Title: Re: Official Clinical Trial of ClusterBusters Unde
Post by SommelierCH on Mar 10th, 2004, 8:53am
5:55 am. Well that was uh…mellow. I forgot how mellow it is.

The music sounded a lot better, then I realized, I had the headphones on.

I did come up with one life question. Should I throw out my old vinegar;  when they age it on purpose?

I don’t expect too much relief from this 3 week Semi-Cluster thing, since it doesn’t respond to triptans. But it’s 6 months till my next Cluster cycle, so I hope I get to skip it.

Thanks again ClusterBusters. It's like you personally reached out and handed it to me. Way Cool.

David J.

Title: Re: Official Clinical Trial of ClusterBusters Unde
Post by hdbngr on Mar 10th, 2004, 9:35am
COOL!

Title: Re: Official Clinical Trial of ClusterBusters Unde
Post by Flounder on Mar 12th, 2004, 1:31am

on 03/09/04 at 22:10:07, Not4Hire wrote:
...finally draggin' my butt into this thread.... but I hope you know:

Bob, Mark, Craig, Mitch, 'brix, Tracey, and MY list goes on and on.... (don't think I don't know who ya are....but when ya start with NAMES--ya always forget some body).....

FUCKENEH!

...I read the CB board every day.... the energy you all have dedicated is truly amazing.... I hope all the work bears fruit....  it certainly helped my *dog* get over *his* headaches.....

Steve(N4H)


Don't forget to add Steve to that list !!!!


That is your dogs name, Right?

Title: Re: Official Clinical Trial of ClusterBusters Unde
Post by Mikey on Mar 12th, 2004, 2:06am
Congratulations Guys and Gals!!!!!

Can't wait to see what happens!!

Can't wait to see where i sign up!!

Mikey,  ;;D



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