Senior Fellow in Public Health and Journalism, Center for Global Public Health, UC Berkeley. My academic position is largely funded by donations from patients. This account is an automatic WordPress-to-Fediverse feed; replies here will not be seen.
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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…
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Cochrane CFS/ME Exercise Review “May Not Apply” to Patients Diagnosed with Newer ME/CFS Definitions, Per Lead Author
It’s hard to keep up with everything going on in this field these days. So I missed the fact that Lillebeth Larun, the lead author behind the deeply flawed Cochrane review of exercise therapies for what the organization then called “CFS/ME,” has concocted yet another unconvincing defense of her work. (Larun is a researcher and…
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“Mass Psychogenic Illness” at Heathrow Airport–NOT!
On Monday afternoon, a bunch of people in Terminal 4 at Heathrow, London’s biggest airport, reported feeling ill. The reports led to concerns about a possible toxic exposure, which triggered an evacuation and major flight delays. An initial search for dangerous substances found nothing. On Tuesday, The Guardian ran an article under the following headline:…
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Interview with Columbia’s Ian Lipkin on Heightened Immune Response in ME/CFS, Funding Challenges, and Current Research
Last week, a research team from Columbia University’s Center for Infection and Immunity published a paper called “Heightened innate immunity may trigger chronic inflammation, fatigue and post-exertional malaise in ME/CFS,” in the journal npj Metabolic Health and Disease. The senior investigator, Dr. W. Ian Lipkin, is director of the center and a professor of epidemiology…
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Australian Investigators Blame ME/CFS Patient Advocates for Poor Recruitment in “Active Video Gaming” Trial
In a new paper, a team of investigators from the University of South Australia in Adelaide, Australia, describes a “pilot feasibility” trial for an ME/CFS intervention focused on physical activity. The trial fell dramatically short on recruitment efforts—a failure that the investigators appear to explicitly blame on the patient community rather than any possible shortcomings…