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(Message started by: Pinkfloyd on Oct 27th, 2004, 2:11am)
Title: Clusterbusters visit Boston
Post by Pinkfloyd on Oct 27th, 2004, 2:11am
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
Title: Re: Clusterbusters visit Boston
Post by vig on Oct 27th, 2004, 9:46am
FANTASTIC!
Title: Re: Clusterbusters visit Boston
Post by eileen on Oct 27th, 2004, 10:07am
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.
Title: Re: Clusterbusters visit Boston
Post by manana on Oct 27th, 2004, 11:39am
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!
Title: Re: Clusterbusters visit Boston
Post by miapet on Oct 27th, 2004, 5:55pm
*YAY* *happy dance* Thanks for working so hard, and for making this happen!!!!!  

CLUSTERBUSTERS ROCK!!!!!!!!!!!!!!!!!!!!!!!!

*positive light and energy*
miapet
Title: Re: Clusterbusters visit Boston
Post by Kris_in_SJ on Oct 27th, 2004, 8:09pm
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
Title: Re: Clusterbusters visit Boston
Post by D on Oct 30th, 2004, 2:02am
Excellent Post! Busters Rock!
Title: Re: Clusterbusters visit Boston
Post by Flash on Oct 30th, 2004, 9:21am
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!
Title: Re: Clusterbusters visit Boston
Post by Flash on Oct 30th, 2004, 9:22am
LOL what a total bastard I am!
Title: Re: Clusterbusters visit Boston
Post by maria9 on Oct 30th, 2004, 10:22am
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
Title: Re: Clusterbusters visit Boston
Post by mynm156 on Oct 30th, 2004, 5:07pm
[smiley=headbanger.gif]  Rock On PF.

[smiley=bow.gif]

MYNM156
Title: Re: Clusterbusters visit Boston
Post by miapet on Oct 30th, 2004, 5:23pm
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
Title: Re: Clusterbusters visit Boston
Post by forgetfulnot on Oct 31st, 2004, 6:49pm
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.
Title: Re: Clusterbusters visit Boston
Post by D on Oct 31st, 2004, 10:19pm
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!
Title: Re: Clusterbusters visit Boston
Post by Magman on Nov 1st, 2004, 2:34pm

on 10/30/04 at 10:22:28, 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

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
Title: Re: Clusterbusters visit Boston
Post by manana on Nov 1st, 2004, 4:16pm
I'm sure others will comment but, I would like to thank this Bod member for his support. manana
Title: Re: Clusterbusters visit Boston
Post by BillyJ. on Nov 1st, 2004, 5:38pm
  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**
Title: Re: Clusterbusters visit Boston
Post by cathy on Nov 1st, 2004, 6:11pm
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
Title: Re: Clusterbusters visit Boston
Post by Flash on Nov 1st, 2004, 6:11pm
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!
Title: Re: Clusterbusters visit Boston
Post by Flash on Nov 1st, 2004, 6:27pm

on 11/01/04 at 18:11:11, cathy wrote:
lets not start slinging mud amongst ourselves lifes to short.


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!
Title: Re: Clusterbusters visit Boston
Post by Flash on Nov 2nd, 2004, 8:15am
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?
Title: Re: Clusterbusters visit Boston
Post by Bob P on Nov 2nd, 2004, 9:47am
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.
Title: Re: Clusterbusters visit Boston
Post by Magman on Nov 2nd, 2004, 10:08am
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
Title: Re: Clusterbusters visit Boston
Post by D on Nov 4th, 2004, 11:11pm
I agree with jmin 100%

Peace & Positive Energy

D
Title: Re: Clusterbusters visit Boston
Post by Mark C on Nov 5th, 2004, 6:50pm

on 11/02/04 at 10:08:16, 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


I agree completly.
Mark
Title: Re: Clusterbusters visit Boston
Post by vig on Nov 5th, 2004, 8:45pm
This is a great turn around.
Title: Re: Clusterbusters visit Boston
Post by Flash on Nov 6th, 2004, 10:24am

on 11/02/04 at 10:08:16, 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


Oh we can all sleep soundly then...  BUT err what's the point in getting behind something once it's approved?  Isn't that like saying "We'll testify on your behalf - once you've been proven innocent."

The truth is that once such a trial is approved then OUCH will have no option but to back it.  Unfortunately the fact that the 'offical' mouthpiece for CH sufferers refuses to publically acknowledge this treatment will make it harder to get a trial approved.

Fortunately for those with MS their 'official' charities had no such reservations.

So to me it looks like OUCH would rather see this treatment strangled at birth, but in the remote event that it isn't, they'll happily jump on the band wagon.

Feel free to correct me if I've got that wrong.
Title: Re: Clusterbusters visit Boston
Post by Bob P on Nov 8th, 2004, 10:40am
Flash,


Quote:
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.
It would probably help OUCH along if you could answer some of these questions.  Perhaps you should take a more professional approach and submit a request to OUCH for support of the trial.  One that maybe includes some whats and whys.  It's a little bit of a reach to ask for an organization to simply jump into this without offering the whys and whats.

Is this a trial to see if shrooms are effective in treating clusters?

Will it look at what dose is effective?

Will it look at what the mechanism by which it is effective?

How will this effect future research (where do you go with these results)?

Is there any chance of getting a drug company to run with this (do their own R&D and develope a drug)?

Has any other MAPS backed study resulted in any of the above results or an actual treatment?

Has any of this been thought out?  Is there any kind of an offical, this what we are doing, these are the hoped for results and this is what we plan on doing with it?

I think you should at least tell OUCH what it is you are asking them to support before you gripe about them not supporting it.  Tell us what "it" is.
Title: Re: Clusterbusters visit Boston
Post by don on Nov 8th, 2004, 1:15pm

Quote:
Perhaps you should take a more professional approach


You mean like OUCH does?
Title: Re: Clusterbusters visit Boston
Post by Pinkfloyd on Nov 8th, 2004, 1:18pm

on 11/08/04 at 10:40:45, Bob P wrote:
Perhaps you should take a more professional approach and submit a request to OUCH for support of the trial.


Clusterbusters take a more professional approach? Was this meant as a joke?

How's this.....OUCH US has had an "official" request from us sitting on the desks of the last three Presidents. We have received one official note of "we're looking at this and will get back to you," three Presidents ago. I assume we are not involved in anything OUCH US deems as important. That is ok. We feel it is important and are therefore spending our time moving forward.

How's this for professional....
Clusterbusters does not answer to the membership of OUCH and will happily continue to answer any professionally conveyed questions from the BoD of OUCH US. IF they ever ask one.

At this point Clusterbusters is considering if it should actually accept any official endorsement from OUCH US until it has had the chance to review the "audits" of it's books from the last several years.  Being a professionally run organization, we (Clusterbusters)must be vigilant in our examinations of any individuals or organizations that wish to attach themselves to this project. We have an image and reputation to uphold.

We will also need to do an audit of it's membership list after Jan. 1st 2005 to make sure they (OUCH US) are no longer making public claims of 1800 members. We can not take the chance of offering as evidence of support in the community, to governmental agencies, a group that claims 1800 members when at best, it may have 100 when membership in OUCH becomes an organization with mandatory dues. We must present our case with accurate and honest data and information.

If OUCH US ever decides to jump on this bandwagon, they're going to have to prove THEY are professional enough to ask for a seat. Once they make an official request to be allowed to endorse this study, Clusterbusters will take their request under advisement from our legal experts and our marketing department head and the team that will be making our case in front of governmental agencies along the way.

Please pass this along to the proper authorities at OUCH US.


Sincerely,
Clusterbusters

modified to fix boxed quote at top to achieve a more professional look to the post.
Title: Re: Clusterbusters visit Boston
Post by Bob P on Nov 8th, 2004, 1:48pm
Thanks for all the whys and whats.  Gee, I know I'm convinced.  How do I join this, what was it again?


Quote:
Clusterbusters take a more professional approach? Was this meant as a joke?
Nope.  It ws meant that Flash could take a more professional approach than running around the various message boards, telling everyone they're messed up.


Quote:
How's this.....OUCH US has had an "official" request from us sitting on the desks of the last three Presidents. We have received one official note of "we're looking at this and will get back to you," three Presidents ago.
I stand corrected there.  Dan proposed support for the trial and used your post from this thread as the reason for the propsed support.  I would have thought that if there was an official proposal he would have posted that rather than cut 'n pasting this post.  I asked the other day on the OUCH board if there was a proposal and got no answer.  I assumed there was no offical proposal in OUCH's possesion.  Now that I know there is, I will bug them further to share it with us members for information sake.


Quote:
At this point Clusterbusters is considering if it should actually accept any official endorsement from OUCH US until it has had the chance to review the "audits" of it's books from the last several years.
I agree.  They should do this.  Their past  tax returns should be available now though.


Quote:
We will also need to do an audit of it's membership list after Jan. 1st 2005 to make sure they (OUCH US) are no longer making public claims of 1800 members. We can not take the chance of offering as evidence of support in the community, to governmental agencies, a group that claims 1800 members when at best, it may have 100 when membership in OUCH becomes an organization with mandatory dues.
Agree here too.  Shame to see OUCH shut out the other 1700 current members because they won't or can't cough up the dues.  Seems to go against everything OUCH should be standing for.  What does it cost to be a member of ClusterBusters?


Quote:
If OUCH US ever decides to jump on this bandwagon, they're going to have to prove THEY are professional enough to ask for a seat. Once they make an official request to be allowed to endorse this study, Clusterbusters will take their request under advisement from our legal experts and our marketing department head and the team that will be making our case in front of governmental agencies along the way.
So why is Flash bellyaching about this all the time?  Wish you guys wuld make up your mind.
Title: Re: Clusterbusters visit Boston
Post by majic on Nov 8th, 2004, 6:36pm
I think Flash is 'bellyaching' as you put it because here in the UK, OUCH refuse to even talk about this treatment.

In fact they have specifically stated that they will allow NO discussion of this matter on their message board and the trustees will refuse to answer any questions about their attitude to this treatment.

I find it quite incredible that here, in a country where we can walk into a shop and buy a bag of fresh mushrooms, that no research is even being contemplated into this treatment and our only avenue is to look to a country where mushrooms are illegal.

Again, the trustees from OUCH-Uk are noticable by their absence from this discussion...I wander why they are so scared of investigating this matter.

Majic
(Flash's evil disciple ;) )
Title: Re: Clusterbusters visit Boston
Post by Flash on Nov 8th, 2004, 8:14pm
Right I'll try and be professional about this.  I assume that means be quiet and stop rocking the boat so that OUCH can sweep this treatment under the carpet.

NOTE: Pressure is only effective if you feel it.

Is this a trial to see if shrooms are effective in treating clusters?

Doh!  What's clusters.  Actually we're investigating athletes foot.  Do you guys get that?  That's why we called ourselves CLUSTERbusters.

Will it look at what dose is effective?

No the scientists in charge have no idea what they're going to do.  They're just running about like headless chickens throwing sackloads of drugs down people's throats.

Will it look at what the mechanism by which it is effective?

No it's only purpose is to see if anyone "bugs out".

How will this effect future research (where do you go with these results)?

To *Las Vegas* to find Elvis.  Where else would we go?

Is there any chance of getting a drug company to run with this (do their own R&D and develope a drug)?

No we intend to give up once we start making any real progress.

Has any other MAPS backed study resulted in any of the above results or an actual treatment?

No MAPS only backs losers.

Has any of this been thought out?  Is there any kind of an offical, this what we are doing, these are the hoped for results and this is what we plan on doing with it?

Well we made a plan on the bag of a cigarette packet, but then tore it up because we ran out of roaching material.

I think you should at least tell OUCH what it is you are asking them to support before you gripe about them not supporting it.  Tell us what "it" is.

WE ARE ATTEMPTING TO FIND A SAFE, EFFECTIVE, AND INEXPENSIVE TREATMENT FOR CLUSTER HEADACHES.

In fact we're so serious about this that we've gathered sufficient evidence to persuade a top US University to seek FDA approval to run a clinical trail on a treatment that over 100 of us have been using sucessfully for several years.  All based on our substantial and persuasive dossier of anecdotal evidence, backed up by some circumstantial scientific knowledge.  In addition we've raised enough funding to get this thing up and running.

Obviously we've done enough to convince lesser authorities than OUCH.  Hopefully now we can make the leap up to the big time.

So - what is your next stalling tactic?  Or do we just chase each others tails for another 5 years?
Title: Re: Clusterbusters visit Boston
Post by Flash on Nov 8th, 2004, 8:33pm
Now that I've got that off my chest...

Is this a trial to see if shrooms are effective in treating clusters?

Yes, specifically clusters no mention of m********.

Will it look at what dose is effective?

No the initial trial will only look at whether psilocybin and LSD are effective per say.  There are reasons for this:

1) The FDA is unlikely to green light a trial where people are given hallucinogenic drugs to self medicate with at home.

2) The cost of keeping people in hospital in order to administer a small daily dose is prohibitive and our funds are currently limited.

Thus the plan is to identify a suitable dose in respect to our budget and run with that.

Will it look at what the mechanism by which it is effective?

No that will be outwith the scope of the trial.  This trail is simply to determine whether these substances are effective.

How will this effect future research (where do you go with these results)?

We will attempt to raise more funding to perform further trails, using the results of the preceeding trials as leverage.

Is there any chance of getting a drug company to run with this (do their own R&D and develope a drug)?

After we get some media coverage then some enterprising company is likely to move on it.  But isn't this something that OUCH should be helping with???

Has any other MAPS backed study resulted in any of the above results or an actual treatment?

MAPS was setup to promote research not treatments.

Has any of this been thought out?  Is there any kind of an offical, this what we are doing, these are the hoped for results and this is what we plan on doing with it?

Yes, and if OUCH gets round the table we'd be happy to share all that information with them and more.

I think you should at least tell OUCH what it is you are asking them to support before you gripe about them not supporting it.  Tell us what "it" is.

OK I have.  Now shit or get off the pot.
Title: Re: Clusterbusters visit Boston
Post by Bob P on Nov 8th, 2004, 8:56pm
Thanks Flash.  That's the most detailed explaination I've gotten to my question so far.  I appreciate the added information.

Quote:
OK I have.  Now shit or get off the pot.
Not my decision to make though.  I'm just asking questions for my own enlightenment.
Title: Re: Clusterbusters visit Boston
Post by Mark C on Nov 9th, 2004, 1:03pm
Please step back to your neutral corners.

OUCH is behind any hope in treating these damn HA.

What the hell is wrong here? I just celebrated a whole year pain free...thanks guys!

OUCH may not have been "professional" in the past. The guard has changed and on my watch this kind of silly bantering has no place in finding help or furthering the cause. Personal issues have no bearing on the direction of OUCH.

As far as our legal issues and compliance etc we have retained a very competent law firm in Texas to audit OUCH from top to bottom. You get what you pay for and these guys are top notch. Details of the initial meeting are on the OUCH public board. Click the flag at the bottom of my post to get to OUCH.

The review from the attorney, according to his reply, should be available within 10 days. The legality of supporting research is on the table, along with other issues plaguing OUCH for quite some time.

Our media department is working on the image OUCH has presented and we are working on the best way to get these changes of information to the members.

Thanks to Steve L (not4hire) for not only being our liaison to this firm but also in being our registered agent in Texas.

Click the flag at the bottom of my post to get to OUCH.

The current service structure of OUCH takes this work seriously and we are always looking for good people to assist in this seemingly thankless job.

In Loving Service,
Mark Cox
OUCH President
Title: Re: Clusterbusters visit Boston
Post by majic on Nov 9th, 2004, 5:30pm
Well perhaps you could give OUCH-UK a firm kick up the backside and persuade them to act in a more grown up and professional manner instead of their present juvenile attitude toward this treatment?

majic
Title: Re: Clusterbusters visit Boston
Post by Bob P on Nov 10th, 2004, 8:26am
Majic,

I have trouble understanding the UK gripe.  Shrooms are legal there.  Set up your own CB site and put the word out.

Here they are illegal so the CB have an uphill fight just to get them considered.
Title: Re: Clusterbusters visit Boston
Post by majic on Nov 10th, 2004, 9:15am
@BobP

Alot of people have trouble understanding the problem OUCH-UK have with this treatment...and as they refuse to even discuss the matter we're unlikely to ever solve this.

There is a perfectly good clusterbusters site already in existance so setting up a UK one would be a complete waste of time & effort.

The problem is letting the sufferers in the UK know about it, particularly those without internet access, which is where the intransigence.of the trustees of OUCH-UK rears its ugly head.

I have no way of contacting sufferers in the UK to 'get the word out', OUCH-UK does. Their refusal to even provide a link to CB means that they are quite deliberately causing alot of people in the UK to suffer needlessly, and that is why this arguement is ongoing.

majic
Title: Re: Clusterbusters visit Boston
Post by vig on Nov 10th, 2004, 9:36am
and who are the leaders of ouch-UK?
Are they elected and when do their terms come up again for vote?
Title: Re: Clusterbusters visit Boston
Post by Bob P on Nov 10th, 2004, 10:06am
I don't think they have elcted officials.  More like appointed Trustees.  I think they just recently hired their first professional Executive Director to help run the show.

I think OUCH-UK has stated their position and will stick with it no matter what the other OUCH groups do.  Seems the productive thing to do now is to look at what other means the UK CBers can come up with to achive their goal.
Title: Re: Clusterbusters visit Boston
Post by majic on Nov 10th, 2004, 10:16am
The people who run OUCH-UK aren't elected...that's part of the problem.

OUCH-UK is a registered charity in the UK,

http://www.charity-commission.gov.uk/registeredcharities/showcharity.asp?remchar=&chyno=1091919

OUCH-UK is run by a self-selected group of people called Trustees. It is extremely difficult to remove or replace the trustees of a charity. The only way to do this is to make a complaint to the Charity Commission and, AIUI there are very limited grounds for doing this. These include, insanity, a serious criminal conviction, improper or fraudulent use of charity funds or not following the Objects of the charity.

If you read the Objects of OUCH at the above link it would seem that a complaint could be made as they are, at the moment, certainly not following their objectives with respect to the mushroom treatment, but herein lies another problem...triggering an investigation by the Charity Commission is likely to cost the charity a great deal of time and money. I would, at this stage, be loathe to take money out of OUCH-UK's coffers to fight an investigation and away from the other work they do for cluster sufferers.

So basically the trustees of OUCH-UK can stick two fingers up at everybody, including their own members, and continue to ignore this treatment and not very much can realistically be done about it. Our only option is to try and persuade them to change their minds. Unfortunately, as they have publically stated, this matter is not up for discussion...for reasons known only to themselves.

So if anyone has any suggestions as to how we can change their minds I would be grateful to hear them.

majic
Title: Re: Clusterbusters visit Boston
Post by Margi on Nov 10th, 2004, 10:17am
I think, also, that each OUCH-UK Trustee is personally liable for the operations of the organization.  

The same is true for we officers of OUCH Canada - each one of the five of us faces the risk of having a cop come knock at our door if we have been perceived to have stepped over any legal line.  We, as a group, decided that we were not at legal risk by publicizing Clusterbusters efforts to our Canadian sufferers.  We post our disclaimers and make sure that we are just presenting facts, not promoting illegal activity. But that was our personal choice - we don't fault any of the other OUCH's for not taking the same stance.

It becomes, therefore, a personal choice for each OUCH and all the other OUCH's have no choice but to respect the involved individuals' decisions.

Clusterbusters will succeed, I believe, with or without all the OUCH's onside.  Their administration is doing good things and they have already made huge strides in the right direction to bring this treatment to cluster sufferers internationally.  

Just my Canadian two cent's worth.

sorry, Craig, you and I were posting at the same time.  

edited for typos and omissions.  I promise I'm done now. ;)
Title: Re: Clusterbusters visit Boston
Post by majic on Nov 10th, 2004, 10:55am
@Margi,

You're quite correct...each trustee is personally liable for the operations of the organization.

But the thing is, they're not being asked to do anything even remotely illegal or irresponsible. Mushrooms are completely legal in the UK...there are now lots of shops where you can just walk in and choose from several different varieties and quantities. This is what makes their stubborn refusal to tell people about this treatment so mystifying.

Why would any CH sufferer not want to tell other sufferers about what appears to be the single most effective treatment that we currently have available? To me this is just cruel and evil.

Clusterbusters will  only be a success if they have a way of telling other sufferers about it. At the moment in the UK the only organisation to have a list of UK clusterheads won't do this...and this is why we have a problem with them.

majic
Title: Re: Clusterbusters visit Boston
Post by Pinkfloyd on Nov 10th, 2004, 4:41pm

on 11/10/04 at 10:55:08, majic wrote:
At the moment in the UK the only organisation to have a list of UK clusterheads won't do this...and this is why we have a problem with them.

majic


Ok, let me clarify something and then make a couple of proposals.

I'm sure majic didn't mean it to possibly sound to anyone that he was speaking for Clusterbusters when he said "we" have a problem.

Not that we may not have a problem, just didn't want anyone else taking his words and running with them somewhere they aren't supposed to go.

That said...I can speak for Clusterbusters.

Let me make a couple of suggestions. If anyone from OUCH UK is reading, if you'd like to discuss them with your members/BoD etc...and let me know what you think, please do. Also, please respond to me in email. We don't need to open and hold negotiations (if we get there) here.

We (Clusterbusters) would be happy to work in some way with OUCH UK during the interum, while they discuss this issue about "backing" this research.

The main thing we look for is getting this information out to as many people as possible. We all want to stop any undue suffering.
Maybe we could write and structure some sort of information pack, or letter that OUCH UK could send out to all it's members. I imagine they wouldn't want to give us their mailing list.  ;;D
Maybe something could get approval from their legal team. Even if it was something directing them to a special (approved by both org's) website page explaining the research going on. ?? Thoughts?

Maybe OUCH UK would allow Clusterbusters to purchase an ad in their newsletter. Not a "try this" ad but something mentioning the research project in general? Thoughts?

I feel that if OUCH UK was to get a positive response from Dr. Goadsby, they might be able to report that.??
I'm willing to print the entire website with all pages, and all the data we have collected. I will pay for the shipping either directly to Dr. Goadsby or a designated (and approved by both parties) Board Member of OUCH UK that would then personally either mail it directly to Goadsby or personally hand deliver it. As long as I am assured it gets to him and the only copy is delivered to him. Is he coming to a meeting soon? I'm sure he wouldn't want to find out he is falling behind on the latest research. ;-)

Maybe a BoD member would like to personally interview one of the researchers from Harvard Medical School. Maybe they could then report on that interview, to its members?

Maybe OUCH UK has some media outlets where we could get a joint interview that discusses the research? hell, even if OUCH used it to explain why they need to keep a "hands off" position on this and Clusterbusters could explain what it was they had to "not" promote?
One way or the other, the info gets out.

If these or any other ideas have some merit....someone from OUCH UK should contact me directly. We can then start some discussions on how we my be able to work together on this. I'll put a team together of our legal counsil, marketing and publicity people etc and we can hash out a reasonable plan.

There HAS to be a way.

I know they arrested a couple of the people that were selling shrooms in the UK. (so I understand the apprehension. I know all about taking upon the personal liability...I and many others have done just that in a country where shrooms are very illegal...so we know)
I also know that they released those people they arrested, because the courts tossed them out. If they can't stop people from selling them, I'm not sure what they could do to people "talking" about them. But, I don't even understand the US legal system so I won't pretend to understand yours.

have your lawyer call my lawyer ;-)

let me know,
BobW
www.clusterbusters.com
Title: Re: Clusterbusters visit Boston
Post by Flash on Nov 12th, 2004, 10:44am
I got a positive response from Professor Goadsby regarding treatment with shrooms as early as 1998 by way of email.   I recieved a letter from him in 2000, copied to my neurologist, that touched on the shroom treatment and was also very supportive.

IMO Goadsby is interested in, and supportive of what we're doing.

Bob - it might be worth you contacting him directly.

I've had some email dialogue with OUCH (UK) in the past.  My understading is that one of the trustees is (or was) a judge who holds strong views on recreational drugs.  That's not surprising to anyone that's spent a day in court and seen the parade of lowlifes that these people are tasked to deal with on a daily basis.  After 4 hours I was all set to join the Nazi party and vote pro-death...

Thing is that nature does not make any distinction between medicinal & recreational, legal & illegal.  LSD sits right there on the pahrmacological tree next to ergotamine and methysergide, psilocybin is closely related to serotonin, DMT is actually produced within the human body, and is essential for life!

The morality of one person should not be permitted to deprive hundreds of people of the chance of a life without pain.  

Nature is not going to turn round and say - "Oh you don't approve of that particular treatment, so here's a more palletable alternative".  The train is leaving the station.

The whole charitable status/legal argument is a complete red herring.  That law is intended to prevent people raising money to purchase arms, or fund terrorism etc.  It does not apply to relaying information of a potential cure.  The BBC is government funded yet it broadcast a programme about treating Parkinsons Disease with MDMA, a drug that is most certainly illegal in this country.  The programme showed a Parkinsons sufferer taking Ecstacy.

If this trustee truely believes there exists a conflict of interests then they should resign their position.  No offence but I'm only here to get the job done.

Imagine the case where a cancer charity was in possesion of information that PCP was 85% effective in curing cancer, but withheld this information from cancer sufferers because someone at the helm of the charity had a morailty issue with recreational drugs.  There would be a riot.

The bottom line is that there is no genuine stumbing block to any OUCH organisation making this information available.  None whatsoever.  Absolute worst case scenario, they would be warned about it and required to remove the reference.  This is extremely unlikely.  

So what are they waiting for?  We can resolve this today.
Title: Re: Clusterbusters visit Boston
Post by catlind on Nov 12th, 2004, 2:52pm
What I don't understand is the hesitation to simply acknowledge there is research going forward in this arena.  This isn't a mickey mouse organization, this is Harvard and it's scientific pharmaceutical research.  I would think there is less morality involved in testing perfumes and such on animals and killing them in the process than examining a naturally occuring substance or compound to possibly produce a medication that would help many.

Thankfully, past research wasn't shunned, and as a result we have medications such as lidocaine that is a direct result of cocaine research, and sansert and the ergots that are a result of LSD research.  

Advocating the use of the imitrex tip is probably more dangerous than advocating the research into naturally occuring substances for pharmaceutical benefits.  The unsterile imitrex tip has more of a chance for a lawsuit in the states than a valid research study.  I've had a few doctors and nurses express their dismay and concern over the dangers of using the imitrex tip.

My personal circumstances are such that I can't grow and participate in this treatment until it is in legal research, so after having failures with over 45 different medications and treatments, all my hopes for a painfree life rest with this research.  I personally would rather be a guinea pig for this research, than have to spend the rest of my life as a now diagnosed chronic, taking narcotics because all the neuro's and docs I've been to have said there isn't anything else out there left to try.  

Without this, I would have no hope, and no hope is a dangerous dangerous place to be when the beast comes knocking.

I know that none of the OUCH's can advocate the use of this treatment, *that* would be illegal, but I can't for the life of me see where there is a legal implication for informing the cluster populace of new research that is taking place.  A simple statement of "Harvard University, McLean Hospital is launching a new research study of the use of psilocybin in treating cluster headaches."  

Just my half pence worth.

Cat
Title: Re: Clusterbusters visit Boston
Post by Biker on Nov 13th, 2004, 8:30am
Let them study me.   There are times (not this moment) that I think ending this life would be better than than the pain.
Title: Re: Clusterbusters visit Boston
Post by Flash on Nov 19th, 2004, 11:40am
Is it just me, or is the silence deafening?


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