By David Tuller, DrPH
David Putrino is a neuroscientist and physical therapist at Mt. Sinai Hospital in New York. He runs a research lab and a rehabilitation center that quickly became a magnet for patients grappling with what has come to be known as long Covid–what the US National Institutes of Health calls post-acute sequelae of SARS-CoV-2 (PASC). We spoke today about his background and how he began treating long Covid patients, the symptom of post-exertional malaise, the tendency to psychologize medical conditions like long Covid and ME/CFS, etc.
Trial By Error: Now a Scottish Long Covid Study Fails to Mention the Risk of Post-Exertional Malaise
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
And here’s another major trial designed by investigators who think that an exercise program might be the optimal strategy for treating the complex grab-bag of conditions known as long Covid. As with other long Covid research, these investigators seem either unaware of or unconcerned about the core ME/CFS symptom known as post-exertional malaise (PEM)–also called post-exertional symptom exacerbation (PESE) or, in the ME-ICC case definition, post-exertional neuroimmune exhaustion (PENE).
Trial By Error: Two Reports on the Financial Burden of Long Covid and Its Impact on ME/CFS Prevalence
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
It is clear that long Covid—however that term is defined–is having enormous impacts on employment, social benefits, disability insurance, and other domains. Even the coronavirus pandemic were to end today, those impacts would continue long into the future. The pandemic is also likely to lead to a rise in the numbers of those diagnosed with the disease or cluster of diseases currently being called ME/CFS.
Two publications this month shed some light on the situation in the US. First, the Solve Long Covid Initiative published a “white paper” called “Long Covid Impact on Adult Americans: Early Indicators Estimating Prevalence and Cost.” Second, three authors revisit their own earlier estimates of the economic burden of ME/CFS in relation to levels of government research spending. This time, they have incorporated into their analysis the expected increase in cases stemming from the pandemic. (I’m not a statistician or any kind of math whiz, so I’m not commenting on the models and calculations used in these analyses.)
Trial By Error: An Interview with Meghan O’Rourke, Author of “The Invisible Kingdom”
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
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
*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
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
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.
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Trial By Error: More on the REGAIN Trial for Long Covid Patients
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.
[Read more…] about Trial By Error: More on the REGAIN Trial for Long Covid Patients
Trial By Error: Can Someone Please Slap a Warning Label on this Exercise-and-Rehab Long Covid Study?
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
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
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.