New poor Guardian article "ME and the perils of internet activism" 28th July 2019

Lucibee said:
It looks like they've tied themselves in all sorts of knots over this: https://www.cochranelibrary.com/cds....pub2/detailed-comment/en?messageId=202396298
How can they say, "The authors of the Cochrane review have, however, not been involved in the correspondence between QMUL and ICO, and we have no knowledge of what QMUL has referred to in their response" and "your comment contains certain statements relating to the FOI request submitted to QMUL, and their responses on the current availability of raw data from the PACE trial. The Cochrane reviewers have no knowledge of these matters, and can neither confirm nor reject the statements made in your comment" and then still say "We can confirm that the Cochrane reviewers will have access to sufficient PACE trial data to perform the review in accordance with the Cochrane protocol", when three of the PACE trial authors, at least two of whom very much do have knowledge of those matters, are also potential authors of the IPD review?

@Caroline Struthers - when was the comment submitted?
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Hi. I can't remember when I submitted that comment...maybe October 2018?? Yes they tied themselves in knots with the answer...in fact I didn't really understand it. But I didn't have the energy to respond to ask for clarification. At that time I thought that the full review would be published. I submitted that comment about data because someone in the editorial unit told me it was pointless complaining that the authors of PACE were on the author team of the review because it wasn't against Cochrane's rules.
 
rvallee said:
I'm not sure there's much strategy involved. The ship is sinking and they're just randomly throwing poop around to delay the consequences. In the end they are making everything worse for themselves but it's purely reactive to circumstances they never imagined would ever happen.
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They're in a loop trying to save their latest dishonest statement with more dishonesty and it gets less believable every year. In their response to Wilshre et al, Sharpe was essentially claiming that they have found a method to eliminate the issue of biased reporting in questionnaire-based research. If they really had, they're in for a Nobel prize, but of course they don't, that's just another lie they made up on the spot. In the end it will destroy their credibility and reputation.
 
Caroline Struthers said:
I can't remember when I submitted that comment...maybe October 2018??
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Might have been earlier than that - What's new and Version history suggests May 2018 or earlier, if that Feedback was your comment:

Cochrane_IPDprotocol.png

I guess they withdrew it because they couldn't simultaneously claim that the PACE data was unobtainable to the ICO (filing cabinet guarded by 3 leopards in a basement to which they had lost the key) and then miraculously available for their IPD review. Makes sense.
 
Lucibee said:
I guess they withdrew it because they couldn't simultaneously claim that the PACE data was unobtainable to the ICO (filing cabinet guarded by 3 leopards in a basement to which they had lost the key) and then miraculously available for their IPD review. Makes sense.
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I suspect it was withdrawn because peer review comments were so damning. I presume that if they revised it they would have to resubmit to the same referees and certainly some of those indicated that the whole thing was substandard! Conflict of interest was also raised as an insuperable problem.
 
Jonathan Edwards said:
I suspect it was withdrawn because peer review comments were so damning. I presume that if they revised it they would have to resubmit to the same referees and certainly some of those indicated that the whole thing was substandard! Conflict of interest was also raised as an insuperable problem.
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Lucibee said:
Might have been earlier than that - What's new and Version history suggests May 2018 or earlier, if that Feedback was your comment:

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I guess they withdrew it because they couldn't simultaneously claim that the PACE data was unobtainable to the ICO (filing cabinet guarded by 3 leopards in a basement to which they had lost the key) and then miraculously available for their IPD review. Makes sense.
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Blimey. Yes you're right. Doesn't time fly when you're enjoying yourself?!
 
Trial By Error: A Stupid Article in The Guardian


People who know little or nothing about the illness or cluster of illnesses variously called myalgic encephalomyelitis, chronic fatigue syndrome, CFS/ME, and ME/CFS can’t seem to stop writing stupid and ill-informed stories about it. And Professor Michael Sharpe seems to blame “Americans”–rather than his own disastrous research–for his current problems and the reputational damage he has suffered. That’s mainly what I got from articles in The Guardian and Psychology Today that followed one another in quick and dispiriting succession last month.
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http://www.virology.ws/2019/08/13/trial-by-error-a-stupid-article-in-the-guardian
 
You have to agree with the comment that we were doing just fine until the Americans interfered. Hysteria was kept under control. Sensible investigations were conducted. Then Eisenberg brought the good news from John Hopkins via Harvard to Oxford and impressed Goldberg and his acolytes by quoting the wrong statistics. The art of deference is well established in certain British circles - less so in others.
 
As Professor Sharpe knows very well, the entire CBT/GET paradigm for treatment of ME/CFS is based on the notion that there is no underlying organic illness—just unhelpful illness beliefs that lead people to remain sedentary and become deconditioned. This approach was outlined in 1989 in a seminal article co-authored by Sir Simon Wessely and Professor Trudie Chalder, among others. Professor Sharpe and the rest of the CBT/GET cabal have routinely posited that this deconditioning, and nothing pathophysiological, is causing the symptoms.
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nice quote for tweeting etc
 
Another important and wonderful article correcting some media campaigners' spin -- thank you, @dave30th

Are you aware that you are not only "a man called David Tuller" but you also write for a "blog called Virology"?

It's specified as a "well-read blog" at least.

(Anyway, I like how you write about a trial--a trial called a piece of crap.)
 
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I particularly like this paragraph:
The second purported reason for the PACE controversy is one that these people routinely trot out–the notion that patients object to the treatments because the treatments imply the illness is psychological or psychiatric in nature. This is untrue. Patients object to the PACE trial because it stinks. It violated multiple methodological and ethical principles of scientific research, whether Professor Sharpe and his colleagues want to acknowledge this or not. I assume Anthony has not done his homework and has not read the open letters to The Lancet or other core documentation of the trial’s failings.
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(This naturally brings me back to the American literature survey course I took my freshman year of college. “Call me Ishmael” is the first line of Moby-Dick and among the most famous first lines in American literature. Anyone who reads Moby Dick in a college literature course learns immediately that you have no idea if Ishmael is his name or not. All you know is that’s what he wants people to call him, for whatever reason. So, given that: Call me David Tuller.)
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I didn't think of Moby Dick, but it did remind me of this:

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So I think "a man called David Tuller" actually sounds quite heroic ...
 
Professor Michael Sharpe seems to blame “Americans”
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Dept of Psychiatry

Event:
Michael Sharpe, MA, MB BChir, MD, FRCP, FRCPsych, FACLP - Lecture
Sharpe-201908021324.jpg


Professor of Psychological Medicine / Fellow of Saint Cross College, Oxford / Honorary Consultant in Psychological Medicine and Trust Lead in Psychological Medicine at Oxford University Hospitals NHS Foundation Trust and Advisor to Oxford Health NHS Foundation Trust
Topic: New Models of Inpatient C-L: Proactive Integrated Psychiatry for Older Patients
When: November 12, 2019 (Tuesday) at 8-9:30am add to calendar
Location: Center for Neural Circuits and Behavior - Large Auditorium (map)
Attachment: 11.12.19 Visiting Prof _Sharpe-201908161443.pdf
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Event:

Michael Sharpe, MA, MB BChir, MD, FRCP, FRCPsych, FACLP - Lecture
Sharpe-201908021326.jpg


Professor of Psychological Medicine / Fellow of Saint Cross College, Oxford / Honorary Consultant in Psychological Medicine and Trust Lead in Psychological Medicine at Oxford University Hospitals NHS Foundation Trust and Advisor to Oxford Health NHS Foundation Trust
Topic: Collaborative Psychiatric Care for Medical Subspecialties: What We Have Learned from the Experience in Oncology
When: November 13, 2019 (Wednesday) at 8-9:30am add to calendar
Location: Leichtag Building - Room 107 (map)
Attachment: 11.13.19 Visiting Prof _Sharpe-201908161445.pdf
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It's hilarious that the following description is apparently intended to raise eyebrows about David Tuller:
“He takes a highly detailed approach to medical papers, closely reading them to uncover any inconsistencies or potential flaws.”
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It reminds me of a line from an old episode of "Get Smart" in which Max is on trial...

Maxwell Smart : "Now it's easy for the prosecuting attorney to stand up here and accuse me of all these horrible crimes. It's easy for him... He's got proof!"
 
Forbin said:
It's hilarious that the following description is apparently intended to raise eyebrows about David Tuller:


It reminds me of a line from an old episode of "Get Smart" in which Max is on trial...

Maxwell Smart : "Now it's easy for the prosecuting attorney to stand up here and accuse me of all these horrible crimes. It's easy for him... He's got proof!"
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Or from Liar, liar:

"Objection!"
"On what grounds?"
"It's devastating to my case"
 
This just feels like such deja vu. I wonder when patients in general are going to get wise that we are in the political arena , not some pure scientific problem, that will be solved in a lab. I would love if the problem was that neat and that easily solvable but the problem is basically political economy. There’s not enough funding for biomedical research and there’s too much funding for crappy psych research. AIDS activists were not scientists but basically solved this problem by being much, much more aggressive than current ME advocacy groups are with their protests etc. they were perhaps simply less sicker than the average ME patient, but I have hard time believing this is impossible for us to replicate. ANs to think I see people calling for more civility on our side. AIDS isn’t an extremely treatable, almost trivial illness , when it used to be a death sentence, because of civility. And it’s not all due to the scientists either, although they should get credit. How can our scientists do anything without proper funding?
 
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