Trial By Error, by David Tuller
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In Protocol for Long COVID Exercise Trial, Investigators Advocate Lying to Participants
Researchers are planning yet another trial of a rehabilitative exercise program for Long COVID—but, in this one, they propose to lie to all the participants about the nature of the study and the intervention being investigated. BMJ Open has recently published a paper called “Pursuing Reduction in Fatigue After COVID-19 via Exercise and Rehabilitation PREFACER:…
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Some Things I’ve Read Recently: Anil van der Zee on Sex, “Mold Warrior” Johnson, and a Rant Against the Word “Journey”
Anil van der Zee says “Fuck M.E.” One aspect of ME and ME/CFS that receives perhaps too little attention is the impact on someone’s sex life. Engaging in sexual activity takes a significant amount of energy—and is therefore likely to trigger post-exertional malaise for many with this illness. Especially for those severely affected, for whom…
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Some Things I’ve Read Recently–Aboriginals and Long COVID, Tips for Disability Claims, Profile of Ron Davis
Failure to address Long COVID in Australian Aboriginal communities Croakey Health Media is a small but feisty Australian news outlet that covers social and structural inequities in healthcare. Croakey recently published “a call for action to address Long COVID in Aboriginal communities,” which focused in particular on the situation in the Northern Territory (NT). The…
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Journalist Simon Spichak on Lack of Focus on Post-Exertional Malaise in Long COVID Exercise Trials
According to the headline of a recent article in The Sick Times, “less than 20% of Long COVID trials involving exercise even mention post-exertional malaise.” The news organization analyzed the registration records for Long COVID clinical trials and found that only a small minority assess or take into account post-exertional malaise (PEM), the defining characteristic of…
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JAMA Touts Long COVID Exercise Trial with Clinically Insignificant Results; Most LC Exercise Trials Ignore PEM, Per Sick Times
In its current “Medical News in Brief” section, JAMA is touting and amplifying the questionable claims of a flawed trial to treat or prevent Long COVID published by one of the journals under its umbrella—JAMANetworkOpen. The JAMA headline: “Resistance Training Improves Long COVID Outcomes.” Technically, the headline is true. In the trial, participants who received…
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Another Exercise Trial with Clinically Insignificant Findings
A recent study from JAMA Network Open, called “Resistance Exercise Therapy After COVID-19 Infection: A Randomized Clinical Trial,” demonstrates some of the flaws that so often mar papers in this field of research. The trial’s reported results do not warrant the optimistic conclusion that the intervention “may be a generalizable therapy for individuals with persisting…
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A New Cookbook for People with Chronic Illness
In September, Rachel Riggs published her first cookbook, called “In Good Health: Uncomplicated, Allergen-Aware Recipes for a Nourished Life.” Riggs, a longtime foodie who lives in southern California, found herself unable to eat many of her favorite dishes after the onset of chronic illness a decade or so ago. (Her diagnoses include myalgic encephalomyelitis (ME),…
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Some Thoughts on Ten Years of Trial By Error
Ten years ago this month, I launched Trial By Error with a 15,000-word investigation of the misbegotten and fraudulent PACE trial, which purported to prove that graded exercise therapy (GET) and cognitive behavior therapy (CBT) could cure what they then called chronic fatigue syndrome. And what an amazing ride it’s been for me—difficult and challenging…
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Dutch Paper on Medical Abuse of Kids Ignores NICE Guidance on ME/CFS-Related Safeguarding Issues
The journal Child Abuse & Neglect recently published a paper called “Characteristics of 86 families and 142 children diagnosed with Pediatric Condition Falsification in the Netherlands.” The study analyzed files from the country’s Child Abuse Counseling and Reporting Center (CACRC), to which anyone can refer a suspected case. According to the paper, the aim was…
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Lancet Journal Agrees to Correct Seriously Flawed Paper on Long COVID Interventions
In late August, I sent a letter to eClinicalMedicine, a Lancet journal, about an egregiously flawed paper called “Effects of therapeutic interventions on long COVID: a meta-analysis of randomized controlled trials.” The study was a mess. It concluded, with “high-certainty evidence,” that exercise training was effective and “should be prioritized.” As I pointed out in…
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Interview with Professor Chris Ponting on Building ME/CFS Research Infructure with PRIME
The UK Medical Research Council recently awarded £800,000 over four years to PRIME, a partnership between Action For ME and the University of Edinburgh. PRIME will seek to develop a research infrastructure to pursue investigations into ME/CFS. The funding starts this month. According to Action For ME, the goals of PRIME are: “1. Coordinate and…
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My Letter to Cochrane’s Chief Executive Officer
The other day, I posted yet another blog about Cochrane’s deeply flawed 2019 review of exercise therapy for what it called chronic fatigue syndrome (CFS), and the organization’s decision last December to abandon a planned update. Specifically, I was commenting on a response from the review’s lead author, Lillebeth Larun, to a comment from the…