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Topic: Clusters and Shrooms in The Guardian newspaper (Read 1851 times) |
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BikerBob
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Re: Clusters and Shrooms in The Guardian newspaper
« Reply #1 on: Aug 2nd, 2005, 3:35am » |
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on Aug 2nd, 2005, 2:54am, Flash wrote:http://society.guardian.co.uk/drugsandalcohol/story/0,8150,1540653,00.html
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Works for me  Thanks.
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Topical
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Re: Clusters and Shrooms in The Guardian newspaper
« Reply #2 on: Aug 2nd, 2005, 4:28am » |
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Great article.
"Peter Goadsby, professor of neurology at the Institute of Neurology, University College London, and the world's leading expert on cluster headaches, is sceptical about the mushroom therapy.
He argues that the relief reported by some patients may be a placebo effect or owing to natural remission. "
How are blind trials going to be conducted to convince the medical establishment that it is a viable treatment?
He favors testing LSD. Giving micro doses of that without tripping is going to be fairly hard, if not impossible. My point is, will we ever get past being able to rule out a "placebo effect"?
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Flash
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Re: Clusters and Shrooms in The Guardian newspaper
« Reply #3 on: Aug 2nd, 2005, 4:58am » |
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Would have helped if you'd accurately quoted what he'd said...
Personally, after 12 1/2 years I am very past the whole placebo thing, and I know another 100 or so people that are too.
The bottom line is that the message is properly out at last, and people have the means to treat themsleves should they so desire. It's not easy, it takes some commitment, and it's illegal - but the results are worth it.
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E-Double
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Re: Clusters and Shrooms in The Guardian newspaper
« Reply #4 on: Aug 2nd, 2005, 6:07am » |
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Quote:Peter Goadsby, professor of neurology at the Institute of Neurology, University College London, and the world's leading expert on cluster headaches, is sceptical about the mushroom therapy.
He argues that the relief reported by some patients may be a placebo effect or owing to natural remission. But he does believe the cases warrant a proper clinical study, particularly as ergotomine - which contains lysergic acid, a precursor of LSD - has been used to treat migraines for years.
"It's possible that mushrooms have some useful effect but it's far from proven," Dr Goadsby says. "Cluster headaches are such a devastating problem that people will turn to anything that seems to work." |
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Let him read the reports!
Skeptical does not mean against which could be seen as a blow considering he is "the man"
The fact that he suggests that a study is "deserved" is positive as well as the fact that he states that essentially people will go to great lengths to alleviate pain.....Doesn't that suggest that any treatment be studied?
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Jasmyn
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Re: Clusters and Shrooms in The Guardian newspaper
« Reply #5 on: Aug 2nd, 2005, 9:07am » |
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Great article, glad the message is out there and that means HOPE! 
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Jazz
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lionsound
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Re: Clusters and Shrooms in The Guardian newspaper
« Reply #6 on: Aug 2nd, 2005, 9:10am » |
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Excellent article!
Thanks, Flash!
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| « Last Edit: Aug 2nd, 2005, 9:10am by lionsound » |
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nani
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Re: Clusters and Shrooms in The Guardian newspaper
« Reply #7 on: Aug 2nd, 2005, 9:55am » |
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Great article!! Thanks to those who participated. 
~nani
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Flash
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Re: Clusters and Shrooms in The Guardian newspaper
« Reply #8 on: Aug 2nd, 2005, 10:18am » |
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I think that's as positive as Goadsby could safely be talking to a national newspaper. You have to read between the lines. If he though it was bullshit he would have said so. He can hardly come out 100% in support of the treatment with what little information he has to go on. Also remember that his contact is mainly through OUCH (UK) and shrooms don't even make their list at present.
So personally I consider his quoted position to be positive, and I believe we should focus on the positive parts of his quote rather than placebo and natural remission. Remember that he did not have to mention the fact that it was related to ergotame, or say that it was worthy of further investigation. But he did - and that, above all, is what counts.
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vig
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Re: Clusters and Shrooms in The Guardian newspaper
« Reply #9 on: Aug 2nd, 2005, 10:19am » |
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On the whole, I think it's a great article...
and the quoted part is excellent, it's the veracity of the unquoted part that I'm questioning
and I can understand his professional reluctance...
but anybody thinking this is a placebo is just wrong....
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| « Last Edit: Aug 2nd, 2005, 10:21am by vig » |
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pubgirl
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Re: Clusters and Shrooms in The Guardian newspaper
« Reply #10 on: Aug 2nd, 2005, 12:20pm » |
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on Aug 2nd, 2005, 9:48am, vig wrote:"He argues that the relief reported by some patients may be a placebo effect or owing to natural remission."
I've never heard anything like that attributed to him before and it's NOT the part that was quoted.
Can we get someone to ask him again what his real feelings are?
This isn't a placebo or natural remission. |
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Vig
I'm afraid he has been asked, asked and asked again by many different people in many different ways. I suspect as Flash says that this is as far as he is prepared to go, and truthfully I think it is further than we might have expected. I have never even heard him say he thinks it is worth further investigation before and at least he didn't say what he has said before that he feels there are real dangers involved with people with undiagnosed mental health conditions. Flash is right on another count, if PG thinks something has no value at all, he will say so very clearly. You should hear him on the subject of capsaicin, it's very funny!
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Bob P
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Re: Clusters and Shrooms in The Guardian newspaper
« Reply #11 on: Aug 2nd, 2005, 3:21pm » |
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When I presented him with the preliminary results of fungi 3 or 4 years ago his response was, "Hmmmm, I'll have to take another look at the pharmicology there".
Another doctor from Diamond Clinic said it could very well help but "why mess with it when there is a legal version, Sansert."
Fact is Halpern & Sewell are the only hope for any legitimization at the moment. Nobody else is going to take a bunch of yahoos tripping on shrooms very seriously.
It is, after all, only a headache.
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Flash
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Re: Clusters and Shrooms in The Guardian newspaper
« Reply #12 on: Aug 3rd, 2005, 7:34am » |
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on Aug 2nd, 2005, 12:20pm, pubgirl wrote:| I'm afraid he has been asked, asked and asked again by many different people in many different ways. I suspect as Flash says that this is as far as he is prepared to go, and truthfully I think it is further than we might have expected. I have never even heard him say he thinks it is worth further investigation before and at least he didn't say what he has said before that he feels there are real dangers involved with people with undiagnosed mental health conditions. Flash is right on another count, if PG thinks something has no value at all, he will say so very clearly. |
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Wendy - Bob has been trying to contact PG for some time. We'd like to send him copies of our case reports, and give him access to all the same data that the guys at Harvard have. It's not really fair for anyone to put the guy on the spot when he doesn't have much to go on.
The data we have is from personal testimony and was not gathered under anything approaching scientific conditions. So while we would not expect anyone to jump off the fence on that basis, several things do stand out.
Firstly it's worth mentioning that every clusterbuster has been assigned a case number. We each periodically update our case reports. We keep track of treatments, dosage, and whether we were taking any other medicines. Of course we also provide the results.
The stand out things are that:
1) The success rate is much greater than you'd expect to see with a placebo, and in fact significantly greater than you see with any other cluster medication. AND remember this is a bunch of people literally groping around in the dark working with inconsistant doses and infrequent treatments!
2) The treatment works over a much longer term than would typically be expected of a placebo - several years in many cases.
3) Most people embarking on this treatment, especially back in the early days, did not expect it to work and were shocked when it did. This is still true in many cases.
4) Natural remission can pretty much be ruled out due to the sheer scale of the coincidence.
5) The overwhelming majority of clusterbusters now use this as their sole method of treatment, and many of those have been doing so for a long time now. CH is such a painful condition that it is unlikely so many people would choose to suffer ANY treatment that was ineffective.
So we would be grateful if you (or anyone that has contact with PG) could persuade him to take us up on our offer. Surely the data itself, from so many CH-ers, over such a long period of time, would be useful to him regardless of the mushroom angle.
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vig
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Re: Clusters and Shrooms in The Guardian newspaper
« Reply #13 on: Aug 3rd, 2005, 8:39am » |
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on Aug 2nd, 2005, 3:21pm, Bob P wrote:Dr. Goadsby:
"Hmmmm, I'll have to take another look at the pharmicology (sic) there". |
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Just curious...
DID he look at the pharmacology after saying that?
I think he'd be doing us all a great service by doing that.
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pubgirl
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Re: Clusters and Shrooms in The Guardian newspaper
« Reply #14 on: Aug 3rd, 2005, 8:59am » |
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Flash
Why don't you just send it to him? His work address is a matter of public knowledge.
If you want more than this, tell Bob to ask Mike. He talks to and sees PG regularly. Bob has Mike's email.
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Bob P
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Re: Clusters and Shrooms in The Guardian newspaper
« Reply #15 on: Aug 3rd, 2005, 9:08am » |
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Quote:| DID he look at the pharmacology after saying that? |
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I doubt it. The tone I read into the response was more one of a mild blow off.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
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Flash
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Re: Clusters and Shrooms in The Guardian newspaper
« Reply #16 on: Aug 3rd, 2005, 9:52am » |
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on Aug 3rd, 2005, 8:59am, pubgirl wrote:Flash
Why don't you just send it to him? His work address is a matter of public knowledge.
If you want more than this, tell Bob to ask Mike. He talks to and sees PG regularly. Bob has Mike's email.
W |
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No point in sending this unless he's going to look at it. Some dialogue would be nice. Also, assuming he is prepared to look at it then it would be much easier to email, since it's all already in electronic form and runs to a lot of pages.
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Pinkfloyd
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Re: Clusters and Shrooms in The Guardian newspaper
« Reply #17 on: Aug 3rd, 2005, 10:37am » |
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on Aug 3rd, 2005, 8:59am, pubgirl wrote:Flash
Why don't you just send it to him? W |
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Hiya Wendy!!
I have already sent him quite a bit of information in the form of a synopsis. Offered him access to all our data and records. Contact info with all the doctors involved if he'd rather deal just through professional ranks.
All his responses could be boiled down to...."interesting"
We have reams (and I mean reams) of data and reports. I would venture a guess of in excess of 2000 pages. It's also available on cd.
This does not include anything already generated at Harvard, which is also substantial.
It would be not only presumptuous on our part to send it all to him and ask him to "read this", it would also be counterproductive IMHO, without his asking for specific data.
You can lead a horse to water.....blah blah blah...
When he's ready, so are we. I think that he may feel that when he makes that request, which he will at some point, he will be "officially" interested and in this case, that carries with it, some baggage.
As to his remarks in the article, this is my official response to his official response
The placebo effect is just something we will need to prove inconsequential. Just as with these being spontaneous remissions. We knew all along that those would be the first two bridges to cross with cluster specialists. All the doctors involved and I have been discussing this very subject for two years now in anticipation.
I'm sure Prof. Goadsby, if asked under normal circumstances (read: not in the context of magic mushrooms) he would tell you that clusters are one of the very few conditions where placebos are all but non existent. Sort of like a placebo for a broken leg. He knows it's not a problem but it IS one thing that needs to be eliminated as a possible cause. He also knows the numbers we are talking about, but again, these are not "officially" scientifically gathered conclusions (yet). The same is true for spontaneous remissions. Yes, anyone of us could have (and have most likely had) spontaneous remissions, where cycles end (or begin) when we didn't expect it. When 200-300 people experience remissions (of varying lenghts) at very high percentages....it changes the landscape. In "general" headache treatment discussions, placebos can account for 30-50% of positive results with newly studied drugs. Its just the first thing that is asked. We need to be prepared to answer all the same questions that Glaxo is asked, and we are.
This is a dance we must continue, and are prepared to finish. One step at a time and knowing which toes we need to step on, and which ones we need to avoid.
Flash is correct. Goadsby's statement that this (psychedelics) should be investigated is huge, and far outweighs his stated reservations which is no more than a CYA addendum, IMHO.
Bobw
P.S. Hope you're well Wendy
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| « Last Edit: Aug 3rd, 2005, 10:39am by Pinkfloyd » |
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pubgirl
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Re: Clusters and Shrooms in The Guardian newspaper
« Reply #18 on: Aug 3rd, 2005, 6:17pm » |
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I'm good Bob, thanks for asking. I don't know where we go from here because as you know, PG has been asked informally and formally on lots of occasions for his opinion. Because of the person he is, his private replies tend to be exactly the same as his public ones i.e. he is honest in his reservations in both.
As far as getting him to review your data, I do not have his ear, Mike does as he is closely involved with QS and PG very regularly as their main ONSI subject. I can't speak for him, so suggest you request Mike's help directly.
Wendy
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Flash
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Re: Clusters and Shrooms in The Guardian newspaper
« Reply #19 on: Aug 4th, 2005, 3:24am » |
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I think maybe you've got this the wrong way round. We have an open offer to PG to provide him with our data. It's his loss if he doesn't take us up on it. After 12 1/2 years with only 2 months of total CH time instead of the anticpated 25 months then I couldn't care less for anyone's opinion on what is going on inside my body... regardless their qualifications.
So to make the point absiolutely crystal clear:
We are neither seeking PGs opinion or endorsement. Those things have no impact on the PF status of anyone at Clusterbusters.
As the foremost expert on CH we would EXPECT him to take a look at our data, because it is something that he should, by all accounts, be interested in.
Assuming he really does give a shit.
Sorry to be blunt!
Flash
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| « Last Edit: Aug 4th, 2005, 3:26am by Flash » |
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Pinkfloyd
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Re: Clusters and Shrooms in The Guardian newspaper
« Reply #20 on: Aug 4th, 2005, 9:14am » |
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on Aug 4th, 2005, 3:24am, Flash wrote:So to make the point absiolutely crystal clear:
We are neither seeking PGs opinion or endorsement.
Flash |
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Yes, this is true....to a point.
To borrow a phrase.....Neither sleet nor rain nor heat of PG shall deter us from our rounds.
We will continue to move forward. We do know that PG's endorsement will help bring this to more people, and that is obviously our goal.
We won't be waiting on any establishment though.
Bobw
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pubgirl
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Re: Clusters and Shrooms in The Guardian newspaper
« Reply #21 on: Aug 4th, 2005, 6:16pm » |
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Too funny Flash 
Your pig headed arrogance always was your weak point
and probably your strength.
PG gives more of a shit about CH'ers than anyone here will ever know, and don't tell me his opinion doesn't matter to you, because if he supported you, you'd be shouting it from the rooftops.
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| « Last Edit: Aug 4th, 2005, 6:42pm by pubgirl » |
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mynm156
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Re: Clusters and Shrooms in The Guardian newspaper
« Reply #22 on: Aug 6th, 2005, 9:26pm » |
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WOW!! ITs about time! I am very happy to see a story like that. Hopefully Harvard will have more to add soon.
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Bob P
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Re: Clusters and Shrooms in The Guardian newspaper
« Reply #23 on: Aug 9th, 2005, 1:47pm » |
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Hey Craig, my cluster is over. I think the fungi finally kicked in. Kind of a delayed reaction. It's the only possible explaination for the attacks stopping!
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
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tommyD
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Re: Clusters and Shrooms in The Guardian newspaper
« Reply #24 on: Aug 9th, 2005, 6:01pm » |
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Well, gee Bob, you're right again.
You always are.
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