Month: August 2025
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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…
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Keystone Gathering Update; Anil’s Severe ME Day Video; Fractured Care for Post-Infectious Illness
Keystone gathering round-up from Sick Times Many prominent Long COVID researchers gathered in Santa Fe, New Mexico, last week to discuss ongoing research and brainstorm in efforts to advance the field at the second Keystone Symposia on Long COVID and other post-acute infection syndromes. The first such event was held in the same city two…
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Lancet Paper Claims “Exercise” Should be “Prioritized” in Long COVID Rehabilitation
Added: On X, @mecfsskeptic has posted a very useful thread explaining how loosely the investigators applied the meaning of “Long COVID” in accepting trials for their meta-analysis. A Lancet journal, eClinicalMedicine, has just published a paper called “Effects of therapeutic interventions on long COVID: a meta-analysis of randomized controlled trials.” The study reviewed randomized controlled…
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DecodeME Pre-Print Reports Eight “Genetic Signals” Related to Immune Function and Nervous System
People with ME/CFS differ genetically from the general population, according to the long-awaited results of the largest biological study of the disease to date. By comparing DNA samples from more than 15,000 patients with ME/CFS diagnoses to samples from those who were not diagnosed, the investigators identified eight “genetic signals,” including ones relating to immune…