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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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…
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Three Blogs–Julie Rehmeyer on Beth Mazur’s Death; Whitney Dafoe on Real Life; Elke Hausmann on Exercise and “The Salt Path”
Two years ago, Beth Mazur, who co-founded #MEAction and spent years advocating for better care and more research, committed suicide during a stay with her close friend and fellow person with ME, Julie Rehmeyer. It is hard to imagine what feels unimaginable—the shock and pain of finding the body of someone you love in their…
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Letter to eClinicalMedicine about Exercise Recommendations in Flawed Meta-Analysis of Long COVID Interventions
A journal under the Lancet umbrella, eClinicalMedicine, recently published a study from China called “Effects of therapeutic interventions on long COVID: a meta-analysis of randomized controlled trials.” (I wrote about it here.) The authors themselves determined that most of the research they included was, to be charitable, on the crappy side. Nonetheless, they claimed “high-certainty…
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Hungarian Experts Make Goulash out of NICE Guidelines
In April, the Hungarian journal Orvosi Hetilap [Medical Weekly] published an article called “Interdisciplinary consensus statement about the diagnosis and treatment of chronic fatigue syndrome/myalgic encephalomyelopathy.” The goal, according to the abstract, “is to provide appropriate information for professionals working in the Hungarian health care system: physicians, psychologists, physiotherapists, and dietitians.” [The journal site itself…