By David Tuller, DrPH
When I launched the Trial By Error project in 2015 with a 15,000-word investigation of the piece of crap known more formally as the PACE trial, I had no idea I was launching anything. I figured it was a one-off. After all, could such a disaster of a study really survive the sort of in-depth scrutiny to which I had just subjected PACE? I assumed a retraction would be forthcoming. (In truth, 15,000 words was not nearly enough to cover all the methodological and ethical flaws that marred this awful trial.)
Boy, was I stupid, or at least unbelievably naïve. Lancet editor Richard Horton ignored my investigation, ignored the open letters from distinguised experts condemning the trial, ignored the fact that PACE represented a possible case of serious research misconduct, if not worse. Six years later, PACE remains in the literature—a potent symbol of the many failings of the peer-review system that science has long relied on for quality assurance.
Of course, that 2015 examination turned out to be only the beginning of this project. As many know, I have supported this work through donations to UC Berkeley through the university’s crowdfunding platform, which is open to campus projects in April and October.
So here’s the pitch from this month’s crowdfunding campaign.
Trial By Error:
Reporting on ME, CFS, ME/CFS, “medically unexplained symptoms,” and related stuff
As usual, UC Berkeley has designated October as a month for campus projects to seek tax-deductible gifts through the university’s crowdfunding platform. To support my Trial By Error project from January through June of 2022, I am seeking funding for my position (at 65%) as Senior Fellow in Public Health and Journalism at the Center for Global Public Health, which is part of the School of Public Health.
Of that amount, approximately $44,000 is for salary, $16,000 for health insurance/employment benefits, and the rest for Berkeley’s 7.5 % gift fee.
A Short Recap
I launched the “Trial By Error” series on Virology Blog in October, 2015, with a 15,000-word investigation of the disastrous PACE trial, which tested cognitive behavior therapy and graded exercise therapy as treatments for the illness or cluster of illnesses variously known as ME, CFS, and ME/CFS. Since then, I have posted hundreds of blogs about that crap piece of research and related issues. I have written articles for major news organizations, authored or co-authored multiple peer-reviewed papers, and given talks in half a dozen countries.
Because the symptoms reported by many Long Covid patients overlap with those that characterize ME/CFS, PACE and its bogus findings have finally come under greater public scrutiny. In a widely read September article in The Atlantic about Long Covid, science journalist Ed Yong referred to PACE as “a now-discredited study.” It is hard to express the thrill I felt when reading that phrase rendered as a normative statement in such a high-profile venue—even more so when I realized the phrase was linked to my Virology Blog investigation. It actually brought me close to tears.
Open Letter to NICE Chief Executive
Much has happened recently in this domain. In August, Britain’s National Institute for Health and Care Excellence (NICE) abruptly delayed the imminent publication of its new and much-improved ME/CFS guideline, based on the objections of powerful medical interests. In response, I organized an open letter to the NICE chief executive, signed by an international roster of more than 120 scientists, physicians, and other experts, urging the agency to publish the new guideline as soon as possible. I re-sent the letter two weeks later, with 30 additional experts signed on, along with more than 130 patient and advocacy organizations, charities, and other groups.
Going forward, besides tracking the NICE situation, I plan to keep exposing bad research into psycho-behavioral interventions for ME/CFS and other illnesses that fall under the category of so-called “medically unexplained symptoms,” or MUS. And with the pandemic approaching the two-year mark, more and more Long Covid patients are getting diagnosed with ME, CFS or ME/CFS. The biopsychosocial ideological brigades are seeking to colonize Long Covid as they have other fields, and it is important to keep critiquing their research and assumptions.
Here are a few more highlights of my work since the start of the last crowdfunding:
*I have posted more than three dozen blogs. Many focused on the NICE guidelines. Others criticized recent studies from the PACE authors and their colleagues, reported developments related to the Lightning Process, and documented the ineffectiveness of CBT as a treatment for MUS.
*I have published articles in other journalistic venues. In April, Codastory.com published my investigation of the Lightning Process. In August, I co-wrote a piece for STAT on the implications of the NICE publication delay–including the possible impact on Long Covid patients. In May, Health Affairs published a post I co-wrote called “Paradigm Lost: Lessons For Long COVID-19 From A Changing Approach To Chronic Fatigue Syndrome.”
*In the academic realm, the Journal of Health Psychology published a rebuttal I co-authored with a colleague of a high-profile paper by Professor Trudie Chalder, one of the lead PACE authors, in the Journal of the Royal Society of Medicine. Another journal, Psychological Medicine, published correspondence I co-wrote with a very smart patient to yet another example of misleading research from Professor Trudie Chalder.
*The Journal of Psychosomatic Research published a correction of a study from Professor Peter White, another lead PACE author, based on my complaint. The study, a follow-up to a trial of a self-help graded exercise therapy course, found no benefits for the intervention, but the highlights section failed to mention this inconvenient fact. Now it does.
*Also based on my complaints, two other journals–Psychological Medicine and the Journal of the Neurological Sciences—corrected papers that both made inflated claims about the cost of MUS to the National Health Service. The senior author of both papers, Professor Anthony David, is a long-time colleague of Professor Chalder and other proponents of the biopsychosocial approach to ME/CFS and MUS.
*I have maintained a consistent presence on Facebook and Twitter, responding to events and drawing attention to bad research and anti-scientific claims.
One Final Note
Berkeley takes a 5% share as the university’s standard fee for gifts, plus 2.5% as a crowdfunding/credit card fee. Therefore, adding 7.5% to your donation will ensure that the full amount you intend is going toward the project itself. The donation is tax-deductible (for US taxpayers at least).
Thanks so much for your support. I really appreciate it, especially at this time of global trauma.
A link to my original Trial By Error series: https://www.virology.ws/2015/10/21/trial-by-error-i/
A link to all the posts I have written on Virology Blog: http://www.virology.ws/mecfs/