David Tuller

Trial By Error: North Bristol NHS Trust’s Biased Survey of Patients Attending “CFS/ME Specialist Services”

15 October 2021 by David Tuller 7 Comments

By David Tuller, DrPH

*October is crowdfunding month at Berkeley. I conduct this project as a senior fellow in public health and journalism at the university’s Center for Global Public Health. If you would like to support the project with a donation to Berkeley (tax-deductible for US taxpayers), here’s the place: https://crowdfund.berkeley.edu/project/27513

Two years ago, the North Bristol NHS Trust conducted a survey among current and recent attendees of clinical services for patients with CFS/ME (as the illness was then being called). The survey included one key question: Did respondents believe that specialist care should be available for CFS/ME patients?

Trial By Error: Professor Lubet’s Take on The New Yorker’s Long Covid Article

8 October 2021 by David Tuller 5 Comments

By David Tuller, DrPH

I wrote a post last month about the recent wave of Long Covid coverage—some of it excellent (The Atlantic) and some way over the edge in its assertions of psychogenic causation of symptoms (The American Spectator, Spiked). Then there was the seemingly sympathetic New Yorker article by a physician, with its more subtle form of patient-bashing—portraying adherents of a pathophysiological perspective on Long Covid as irrational, anti-science zealots even as the author expressed compassion for their plight.

This New Yorker piece generated a wave of criticism and push-back from many of those experiencing Long Covid—not to mention ME/CFS patients, who have confronted similar attitudes for years. Among those troubled by it was my friend and sometime co-author Steven Lubet, a professor of law at Northwestern University, who wrote the following commentary for Social Science Space, an academic site. I am reposting the essay here with Professor Lubet’s permission.

Trial By Error: UC Berkeley’s October Crowdfunding Campaign

7 October 2021 by David Tuller 1 Comment

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.

Trial By Error: BBC’s Problematic Coverage of New Long COVID Study

3 October 2021 by David Tuller 6 Comments

By David Tuller, DrPH

Since the start of the coronavirus pandemic, suggesting an equivalence between COVID-19 and influenza has been a consistent approach among those seeking to downplay the current situation. So it’s not surprising to see something similar happen with comparisons between Long COVID and the delayed recovery some people experience after an acute bout of the flu. The BBC has just provided an excellent example of how this framing can appear to minimize the significance of Long COVID.

An article in PLoS Medicine, published on September 28^th, offered a look at Long COVID symptoms based on data from US electronic health records. The study, called “Incidence, co-occurrence, and evolution of long-COVID features: A 6-month retrospective cohort study of 273,618 survivors of COVID-19,” tracked nine key symptom clusters: “breathing difficulties/breathlessness, fatigue/malaise, chest/throat pain, headache, abdominal symptoms, myalgia, other pain, cognitive symptoms, and anxiety/depression.”

Trial By Error: Good Long Covid Coverage from Atlantic; Skeptical Coverage from New Yorker and Others

24 September 2021 by David Tuller 6 Comments

By David Tuller, DrPH

On September 1st, The Atlantic published another excellent piece by Ed Yong—“Long-haulers are fighting for their future.” In exploring how this population has confronted widespread misunderstanding in the medical community, the article highlighted the links between the experiences of Long Covid and ME/CFS patients by focusing on the crucial symptom of post-exertional malaise. That led to discussion of the PACE trial, which investigated both graded exercise therapy and cognitive behavior therapy as ME/CFS treatments but was marred by methodological and ethical flaws. (The main results appeared in The Lancet in 2011.)

Trial By Error: Advocates Propose Fixes to Dysfunctional US Coding System for ME, CFS and ME/CFS

20 September 2021 by David Tuller 10 Comments

By David Tuller, DrPH

I have been focused lately on the continuing saga of the hijacked-and-still-unpublished ME/CFS clinical guidelines (HSUME/CFSCG) from Britain’s National Institute for Health and Care Excellence (NICE). The fate of the HSUME/CFSCG will apparently be addressed at an October so-called “roundtable” meeting of NICE and representatives from relevant interest groups. (I’m not sure what makes it a “roundtable” meeting or what the word “roundtable” is supposed to convey about the tenor of these HSUME/CFSCG proceedings.)

Anyway, while I’ve been focused on the HSUME/CFSCG, other stuff has been happening—like deliberations over proposed changes in how the US medical system should code the disease or diseases included under the constructs of ME, CFS, and ME/CFS. The US uses its own adapted version of the International Classification of Diseases (ICD), with is now in its tenth revision and continues to get updated.

Trial By Error: An Updated Letter to the NICE Chief Executive About the Unpublished ME/CFS Guideline

15 September 2021 by David Tuller

By David Tuller, DrPH

I sent the following letter today to Professor Gillian Leng, chief executive of the National Institute for Health and Care Excellence (NICE). It was a follow-up to the letter I sent on September 1st about the agency’s decision to delay publication of it new ME/CFS guidelines. The letter has now been signed by more than 150 experts and more than 100 UK and international charities, support groups and other relevant organizations.

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Trial By Error: More Science-as-Promotion from the GET Campaigners

14 September 2021 by David Tuller

By David Tuller, DrPH

Professor Trudie Chalder, Professor Peter White and like-minded members of the CBT/GET ideological brigades have appeared desperate in the last year to promote their favored interventions, publishing one shoddy paper after another. This stream of sewage has seemed intended to influence the new ME/CFS clinical guidelines that Britain’s National Institute for Health and Care Excellence (NICE) has been developing since 2017. NICE called off the scheduled August 18^th publication of the new guidelines, which formally reject the longstanding treatment paradigm for ME/CFS, because of fierce objections from the cabal of CBT/GET true believers.

Trial By Error: Jennie Spotila’s Annual Fact-Check of NIH Spending on ME/CFS Research

7 September 2021 by David Tuller

By David Tuller, DrPH

There is a lot going on in the ME and ME/CFS world that I don’t get around to. That’s why I’m always grateful that Jennie Spotila always deconstructs the numbers on the annual spending claims from the National Institutes of Health. Last month, on her blog Occupy M.E., Spotila submitted the NIH’s 2020 numbers to her usual sharp analysis. I am reposting it in full here with her permission.

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Trial By Error: While NICE Waffles, US Specialists Publish New Clinical Guidelines for ME/CFS

1 September 2021 by David Tuller

By David Tuller, DrPH

Two weeks ago, NICE abruptly announced that it was putting the brakes on publication of its new ME/CFS guidelines—a move precipitated by fierce opposition from key members of the GET/CBT ideological brigades in the British medical establishment. Then last week, Mayo Clinic Proceedings, a well-known journal, published a different set of ME/CFS guidelines that—like the unpublished NICE document—specifically advises against the traditional GET/CBT approach.