CFS Patient Advocate take on FDA Blood Study Advisory meeting

[LJS]

A new post by the CFS patient advocate on his take of the FDA meeting.
http://cfspatientadvocate.blogspot.com/2010/12/xrmv-and-csf-fda-blood-study-advisory.html

Also you can read ValB626 gut feeling of the meeting, she was the one who live posted the events of the meeting.
http://www.mecfsforums.com/index.php/topic,3875.msg43554.html#msg43554

 

[Recovery Soon]

A new post by the CFS patient advocate on his take of the FDA meeting.
http://cfspatientadvocate.blogspot.com/2010/12/xrmv-and-csf-fda-blood-study-advisory.html

If CFS gets cured this guy needs to write professional comedy. He is friggin' hilarious.

"Dr. John Coffin was doing his very best to confuse the issues. This behavior involved his usual obnoxious grandstanding and self-preening - trying to display his superior intellect in parsing these issues. Dr. John Coffin is immediately recognizable to the Patient Advocate as a person of the PA’s generation – infinity compromising and perverse - and the PA is both embarrassed and nauseated that he shares this man's culture. Dr. Coffin is a leading light of “The Stupidest Generation” (in the history of the world)."

 

[camas]

I always love the PA's take on things. His report doesn't exactly inspire confidence in those protecting the nation's blood supply, now does it? Yet, in the end, the committee somehow managed to do the right thing...this time.

 

[George]

What was Stoye doing their anyway? I mean this was not an international conference kind of situation. This was an American group, talking about the issue for the American blood products. Was Stoye there because he's Dr. Coffin's friend??

Did anyone notice that there were no negative presentation?? I was kinda surprised and figured the vote was decided before hand since there were no negative presentation to balance out the positive ones. Maybe that's why Stoye was there. He was the negative balance???

 

[camas]

I wondered why a UK virologist was invited to speak too. I still haven't forgiven that [expletive deleted] Stoye for grabbing and covering Mikovits' microphone at the last meeting.

 

[Cort]

I don't always agree with the PA but I always love his posts - and this was one of his best.....a tour de force...

 

[xrayspex]

agree to agree cort!

 

[eric_s]

I'm wondering the same. So far i am not aware of any work this man has done in regards to XMRV or ME/CFS... is there any?? What would make them choose him? Maybe Coffin didn't want this job and proposed Stoye, who knows...

What was Stoye doing their anyway? I mean this was not an international conference kind of situation. This was an American group, talking about the issue for the American blood products. Was Stoye there because he's Dr. Coffin's friend??

Did anyone notice that there were no negative presentation?? I was kinda surprised and figured the vote was decided before hand since there were no negative presentation to balance out the positive ones. Maybe that's why Stoye was there. He was the negative balance???

 

[lansbergen]

What was Stoye doing their anyway? I mean this was not an international conference kind of situation. This was an American group, talking about the issue for the American blood products. Was Stoye there because he's Dr. Coffin's friend??

Did anyone notice that there were no negative presentation?? I was kinda surprised and figured the vote was decided before hand since there were no negative presentation to balance out the positive ones. Maybe that's why Stoye was there. He was the negative balance???

They co-authored 18 papers

 

[floydguy]

They co-authored 18 papers

Yeah, but is this the best situation for take your friend to work day? The disturbing thing is Family Guy's blather and taking control of situations. Where does that power come from - if anywhere?

 

[CBS]

Stoye and Coffin co-authored the article "A New Virus for Old Diseases" that accompanied the Lombardi paper in Science (Oct 8, 2010).

They don't appear to have an issue with general idea of XMRV causing disease. Which brings up a point I think was relevant to the politics behind all of this. Where was the discussion of a ban on blood donations from prostate cancer patients (or even all reproductive cancer patients given the Singh patent application)?

 

[George]

Dang that's just the question I was asking on another thread. I kinda thought Stoye was there to provide opposition and Coffin to make the process look rigorous, with tough questions. But really even the tough questions were easily shot down and the confidence was high. There were no negative studies presented at all.

I thought it was a dog and pony show for a decision that was already in the bag.

 

[CBS]

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2805%2971029-1/fulltext

Some excerpts from the above link and my parenthetical comments on his hero.

Jonathan Stoye is Head of the Division of Virology at the UK Medical Research Council's National Institute for Medical Research. He works on factors that influence interactions between retroviruses and their hosts and the consequences of cross-species transmission of these agents. These interests have led to roles in the risk assessment of subjects as diverse as xenotransplantation and GM crops.

What do you think is the greatest political danger to the scientific profession?
Putting greater emphasis on strategic considerations rather than the rigour and quality of science.
Who is your favourite politician and why?
One who listens to me, but I haven't met him or her yet.
What is the best piece of advice you have received, and from whom?
“It's your career” and “The biggest fish hide deepest”, both from John Coffin of Tufts University School of Medicine.

What is your favourite book, and why?
Lord of the Rings for revealing the power of imagination.

What is your greatest fear?
That my research might be compared to the Emperor's New Clothes.


With which historical figure do you most identify?
Sir Auriel Stein. - (A tool of British imperialism who is vilified in China for looting the "Caves of the Thousand Buddhas," an act for which he was knighted. His spoils included the Diamond Sutra, the world's oldest printed text which has a date corresponding to AD 868, along with 40,000 other scrolls).

 

[George]

Now that was enlightening CBS, especially the parenthetical comments on his hero. (growllllllll)

I have to agree with floyguy (grins) This really is not the best time for bring you best friend to work day.

Stoye obviously has a serious vested interest in what is going on to be in these positions of power at major XMRV related events. I think a protest may well be in order. I'm surprised that people in the NIH/FDA/DHHS have allowed his participation in the FDA panel. It looks like he was invited as a speaker then, muscled his way into a more important role. It makes me question Dr. Coffin's ethics and the appropriateness of the decisions being made here.

 

[Cort]

They co-authored 18 papers

You almost think they felt they needed a Brit there...but why?

That is hilarious CBS...

The guy obviously has a sense of humor but I liked this

What is the best piece of advice you have received, and from whom?
“It's your career” and “The biggest fish hide deepest”, both from John Coffin of Tufts University School of Medicine.

Hopefully he's missing the most deeply buried and biggest fish of all.

If XMRV turns out I suggest we all mass email him and say...It WAS your career and "The biggest fish sure did hide deepest, didn't they?"........

 

[floydguy]

Any possibility that we could protest over a potential conflict of interest for Stoye and any input McClure might have in the future? After all, don' they work for that institution that has docs filed as top secret by the British Government? Might be able to argue that they can't be transparent about what they know or what they might not be able to tell in a public setting or to a foreign government. Even if that foreign government they're protecting is the US. Heh, heh!

 

[Valb626]

You know, my notes may not have made it clear that Stoye's presentation included a discussion of the negative studies. I have the hand-out from his presentation, too, but it would really make me gag (not env or pol) to have to post his slides. Is anyone dying to see them today, rather than waiting until the FDA gets around to it?

 

[xrayspex]

CBS, haha LoVe it--- Stein was a imperialist tool.....huh what does that make Stoye?

I think I will start writing all the feds that I object to this particular brit being imported......someone like Andy Gill though = aokay

 

[eric_s]

“The biggest fish hide deepest”, from John Coffin of Tufts University School of Medicine

Obviously he (Coffin) considers himself to be a very big fish then, because that's what i feel he has been doing since the XMRV story started. He's hiding very deep down and letting the other fish expose themselves and take position

But how could he benefit from that? I don't get it...

 

[George]

Val
Did I total miss something, I though his stated role on the agenda was as a guest speaker to give an overview of the virology?? Why would he be giving a presentation on the negative papers?? Was he listed as a presenter?

And what the hel9 was an invited speaker doing questioning the schedualed presenters or do I have that wrong??

I think I'm with Xray on this and a few firey letters to Collins, Sebillus, and Mangan are in order asking exactly what is his role in an American Federal Committee?!?!?!

If you don't mind posting the information Val, I know it makes the stomach roil but maybe we can get some ammo out of it to gun this guy down.