David Tuller

Trial By Error: An Interview with Meghan O’Rourke, Author of “The Invisible Kingdom”

18 April 2022

By David Tuller, DrPH

*April is crowdfunding month at UC Berkeley. If you like my work, consider making a tax-deductible donation to Berkeley’s School of Public Health to support the Trial By Error project: https://crowdfund.berkeley.edu/project/31347

Last Friday, I interviewed poet, journalist and editor Meghan O’Rourke about The Invisible Kingdom, her insightful and affecting memoir of living with chronic illness. As the book recounts, O’Rourke initially began experiencing perplexing physical signs and sensations not long after graduating from Yale in the late 1990s–“daily hives, dizziness, chronic pain, and drenching night sweats.” She struggled for years with a range of debilitating symptoms, and finally found some relief after being treated for chronic Lyme disease—itself a controversial diagnosis. In 2013, she wrote an extended piece about the issue for The New Yorker.

Trial By Error: The UK Health Research Authority’s Missteps on PACE and the Declaration of Helsinki

14 April 2022

By David Tuller, DrPH

*Note: To give credit where it’s due, Magical Medicine: How to Make an Illness Disappear, an exhaustive investigation from Malcolm Hooper and Margaret Williams, first mentioned the PACE team’s violations of the Declaration of Helsinki 20+ years ago.

The PACE authors and their allies routinely cite the UK’s Health Research Authority as having given this boondoggle of a trial a clean bill of health. The HRA, which oversees research ethics processes and procedures, conducted a review of PACE and issued its findings in January, 2019. The agency assessed PACE as having been conducted properly, but it noted that its purview was limited to “whether the study was properly approved by the Research Ethics Committee (REC),” and questions about the “quality of the study” were beyond its scope.

Trial By Error: PACE Team Stages a Comeback Tour

11 April 2022

Professors Peter White, Trudie Chalder and Michael Sharpe seem to have embarked on what could be called the PACE Rehabilitation Tour.

This is an apparent effort to salvage their reputations and save professional face now that the UK’s National Institute for Health and Care Excellence (NICE) has officially rescinded its previous recommendations for graded exercise therapy and cognitive behavior therapy as treatments for what the agency currently calls ME/CFS. It is also an effort by these professors to gain a foothold in the long Covid marketplace. They hope their crumbling GET/CBT treatment paradigm for ME/CFS can revive its fortunes in a post-coronavirus world.

Trial By Error: More on the REGAIN Trial for Long Covid Patients

8 April 2022

By David Tuller, DrPH

*April is crowdfunding month at UC Berkeley. If you like my work, consider making a tax-deductible donation to Berkeley’s School of Public Health to support the Trial By Error project: https://crowdfund.berkeley.edu/project/31347

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I wrote recently about the problematic REGAIN study from the University of Warwick, which is testing an exercise-and-psychological-rehab program as a treatment for long Covid patients. Unfortunately, neither the protocol nor the participant information sheet, to which participants are referred during the consenting process, mentions the core ME/CFS symptom of post-exertional malaise (PEM), which has also been reported in long Covid.

The FAQ does mention PEM. However, since patients are not required to read the FAQ, there is no guarantee that those currently enrolling in this study will know or have heard anything about this potential risk. Moreover, the FAQ suggests that PEM likely impacts only a “small set” of long Covid patients but provides no evidence to back up this claim. In fact, surveys have indicated that many long Covid patients experience PEM—not just a “small set” of them.

Trial By Error: Can Someone Please Slap a Warning Label on this Exercise-and-Rehab Long Covid Study?

30 March 2022

By David Tuller, DrPH

I’ve been writing for a while about the rush to treat long Covid patients with the outdated and debunked approach long applied to ME/CFS. A major effort to demonstrate that an exercise program can lead to “recovery” from long Covid, sponsored by the University of Warwick and funded with £1.200,000 from the UK’s National Institute for Health Research, is currently recruiting. It goes without saying that the REGAIN study is seriously flawed–as we have come to expect from this type of research.

Trial By Error: British GP Journal Retracts “Opinion” About Lightning Process Written By LP Practitioner

5 March 2022

By David Tuller, DrPH

This week, a journal under the umbrella of the British Journal of General Practice published–and a day later unpublished–a laudatory piece about the Lightning Process from a Lightning Process practitioner. The author, Anna Chellamuthu, is also a GP at Royal Cornwall Hospital. She wrote that the controversial program combining neurolinguistic program, osteopathy and life-coaching cured her daughter of ME/CFS and inspired her to train in the technique herself.

The article in BJGP Life was called “Reflections on NICE, CFS/ME, and the Lightning Process.” It functioned as both a tirade against the new ME/CFS guidelines from Britain’s National Institute for Health and Care Excellence and an advertisement for an unproven commercial intervention. The new NICE guidelines, issued last October, explicitly advise against offering ME/CFS patients the Lightning Process.

Trial By Error: The Usual Suspects Promote a Psychosocial “Research Agenda” for Long Covid

27 February 2022

By David Tuller, DrPH

In what could be described as a form of epistemic land grab, core members of the graded exercise therapy/cognitive behavior therapy (GET/CBT) ideological brigades have proposed a “research agenda” for long Covid that reflects the premises of their crumbling treatment paradigm for ME/CFS. This is not surprising. It has been clear from the early reports of continuing symptoms after Covid-19 that this powerful cabal would seek to colonize the field and devour a large share of the long Covid funding pie.

Trial By Error: My Letter Responding to Norway Health Leader’s Efforts to Denigrate My “Activist” Work

18 February 2022

By David Tuller, DrPH

Updated on March 2, 2022:

Yesterday I received a thoughtful note from Professor Miek Jong in response to my recent letter to her (see below) regarding the effort on the part of a leading Norwegian doctor to denigrate my work by describing me as an “activist.”

I have sent Professor Jong the following answer:

Dear Miek–

Thanks so much for your gracious response. It’s great that you’ve had experience at Berkeley and UCSF!

I don’t mind my work being mentioned in this debate. What I find disturbing is that Dr Flottorp and her colleagues apparently deride anyone opposing their views as an “activist,” notwithstanding any professional and academic credentials or the merits of the issues raised. Moreover, they do so as if the word “activist” automatically disqualifies someone from having a legitimate perspective.

When an intervention essentially tells patients that to acknowledge having an illness or symptoms or even negative thoughts represents a failure, it is self-evident that their responses to subjective questions about how they feel are likely to be infused with an unknown amount of bias. This should not be a controversial or confusing concept for experienced investigators to grasp, but apparently it is.

Good luck holding down the fort in this debate!

Best–David

David Tuller, DrPH
Senior Fellow in Public Health and Journalism
Center for Global Public Health
School of Public Health
University of California, Berkeley

In my previous post about a whine de coeur from northern European members of the GET/CBT idealogical brigades, I mentioned that the lead author, Signe Flottorp, had cited my work in a 2020 letter. In that blunt message, she characterized me as a “well-known ME-activist.” The letter is part of an exchange that was apparently obtained through a freedom of information request and released on social media.

Dr Flottorp is the research director at Norway’s National Institute for Public Health. The exchange was with Miek Jong, the head of NAFKAM, an agency that collects information about alternative medical approaches. In the exchange, Dr Flottorp complained to Dr Jong about a cautionary NAFKAM report about the Lightning Process (LP). Among her complaints was that NAFKAM did not publicize results from the pediatric LP trial conducted by pediatrician Esther Crawley, a methodologically and ethically challenged professor at Bristol University.

Trial By Error: The Lancet Publishes Whine de Coeur from Impassioned GET/CBT Defenders

14 February 2022

By David Tuller, DrPH

The Lancet has just published an anguished whine de coeur from supporters of the graded exercise therapy/cognitive behavior therapy/ [GET/CBT] approach to ME/CFS. (Or CFS/ME, as these authors insist on calling the illness in what those familiar with the debate will recognize as a childish fit of pique.) These impassioned members of the GET/CBT ideological brigades, all from northern European countries, are metaphorically stomping their little feet over the new ME/CFS clinical guideline from the UK’s National Institute for Health and Care Excellence.

Trial By Error: My Exchange of Letters on Amygdala Retraining; That Undead Lightning Process Study

10 February 2022

By David Tuller, DrPH

Earlier this week, I wrote to Helena Liira of the Helsinki University Central Hospital about a new trial of “amygdala and insula retraining” for so-called “functional disorders”—fibromyalgia and irritable bowel syndrome along with ME/CFS and long Covid. (I critiqued the trial here.)

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