By David Tuller, DrPH
This morning (Wednesday) I gave an informal online talk about the piece of crap known as the PACE trial to a small group of UK doctors, researchers and others. The group had been pulled together by Paul Garner, a physician and professor of infectious diseases at Liverpool School of Tropical Medicine. Garner has written several widely read blog posts for BMJ about his struggles with profound exhaustion and other long-Covid symptoms.
In those posts, Garner has expressed sympathy for the plight of people with ME and their challenges in finding adequate medical treatment. Those experiences triggered his interest in the PACE saga–about which I know a little bit.
As sometimes happens, I got a bit, uh, energized while I discussed the PACE trial. It’s possible I dropped a four-letter word as I explained how the outcome thresholds were weakened so much that people could get worse on key measures and still be considered “recovered.” (Or “back to normal,” as one of the PACE investigators falsely declared at the 2011 press conference presenting the first results.)
In the talk, I expressed dismay that the study remains in the medical literature even though 13% of participants met a primary outcome threshold at baseline. If disclosed before publication, that bizarre statistical anomaly would or should have caused immediate rejection of any manuscript. I said the paper, in my opinion, qualified as research misconduct—something I would say about any paper in which the investigators did not disclose that 13% of their participants had met an outcome threshold at baseline.
That a study including this feature passed peer review is hard to understand. Lancet editor Richard Horton, who professes outrage at bad research published in other journals yet thinks highly of PACE, has refused to disclose anything about the reviews. I assume they would, if released, cause some embarrassment, given the many flaws that marred the published paper. Two years ago, more than 100 experts from around the world signed Virology Blog‘s open letter to Horton, which cited the study’s “unacceptable methodological lapses” and requested an independent investigation.
I suggested some of the logic on display in the defense of PACE had a Trumpian quality to it. I also suggested that science can’t work if people who raise legitimate concerns–such as that participants in PACE could be “disabled” and “recovered” simultaneously on key measures–are dismissed as hysterics and dangerous climate-change deniers. I noted that MP Carol Monaghan had called PACE “one of the biggest medical scandals of the 21st* century.” I said I thought it was likely one of the biggest medical scandals of the millennium–although it’s kind of early for a definitive assessment. [*I originally wrote 20th century. Oops! Time flies!]
I didn’t prepare a slide presentation–just sent out a one-pager with a few salient details and thoughts. We didn’t discuss the PACE authors’ extensive ties to disability insurance companies and government agencies—I meant to bring it up, but I forgot! So I made sure to highlight these conflicts of interest in a follow-up e-mail.
The one-pager I sent the participants concluded with the following points:
*Why have all levers of authority in UK science endorsed this study—journals, NHS, Cochrane, etc.? Why hasn’t it been dealt with? Why have patients been so poorly treated?
*Other themes: gaslighting, research misconduct, “eminence-based medicine”
Comments
9 responses to “A Short Talk for UK Docs and Researchers”
The reason why these physicians who are also patients are here is that they themselves experience post viral illness very similar to what all of us patients with ME have endured for decades. The Pace trial cronies have slowed research to a halt for decades. They have engaged in a disinformation campaign to all physicians and researchers that this disease wasn’t worthy to look at. I know because they came to my city to talk to the doctors and since then, clinics were defunded, patients committed suicide. ( this was around the 1990’s).
Let’s hope that these unfortunate physicians will be able to change minds and also demand research that will benefit all who suffer from similar disease profile.
Thank you David.
I am very grateful to Paul Garner for putting together this group and to you David for presenting the talk.
Wow, fantastic! Grateful to see this collaboration! Thank you to Paul Garner and of course to you David!
Thank you to Professor Garner and Dr David Tuller for this. We need more collaboration to highlight the scandal that we know is emerging. I was forewarned this would happen when I first set my group up and so far, what Im seeing, hearing and receiving is akin to a scandal with regard to the lack of care with regard to covid long tail. We are now taking it the next level. We wont be silenced like they have tried to do in the ME Community.
Thank you again for your hard work, David. Your question:
*Why have all levers of authority in UK science endorsed this study—journals, NHS, Cochrane, etc.? Why hasn’t it been dealt with? Why have patients been so poorly treated?”
reminded me of an article about the Wakefield vaccine scandal. It noted that the medical establishment (including journal publishers and doctors) did nothing over Wakefield’s obvious misconduct. It was one crusading journalist who brought him down:
https://www.theaustralian.com.au/world/the-times/andrew-wakefields-pseudoscience-can-help-us-understand-our-modern-posttruth-crisis/news-story/a8a05e7cd546d06277bea38a53c98e0e
This is about the only good news I have read in a very long time. For some reason I can’t remember, my impression is that Dr Garner will not be intimidated by the likes of Regius Professor Sir Simon or Richard Horton (is Horton still on vacation?).
He would never agree to it of course, but a debate between Sir Simon and Dr Garner regarding the PACE disaster would be very entertaining.
Corporate control of ME research and treatment policy in the UK is obvious and well-documented. Those same corporations are large and in-charge in the US as well, but their lines of control of ME research policy are very blurry. Obviously CDC and NIH still have a policy of no research; NIH Director Francis Collins has made that clear. [1] Still, exactly who is making the decisions, and which corporate parasites are pulling their strings?
NIH Director Collins has been a complete no-show regarding the evil virus. He seems to prefer playing guitar and preaching rather than actually running a $30 billion+ agency. My money’s on Fauci. We know he is responsible (at least in part) for booting the ME research program from his agency in Oct 1999:
“Dr. Anthony Fauci, NIAID Director, met with the Dr. Harold Varmus, Director of NIH, and concluded that CFS was more complex and activities should be relocated from a single NIH institute.” (CFSAC minutes Sept 2003)
[1] http://occupyme.net/2019/04/17/i-want-to-believe-dr-collins-but-i-dont/
I don’t think you should worry if you dropped a four-letter word. I don’t think there are many who would be perturbed or offended by that these days, indeed I suspect most would find it both rather amusing that you got so ‘energized’ and a welcome relief from the stuffiness of academia/ the confines of their professional roles.
Thank you continuing to pursue this.
Thank you David for your continuous advocacy fighting for medical justice for ME/CFS. And thank you Paul Garner for gathering your peers and listening to what David had to say. It’s important to know the real reason – psychologising a physical illness for decades – is why there are no safe and effective treatments today for people who don’t fully recover from COVID or other rare and common viruses.
Thank heavens for your involvement !