Tag: MEAction
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What’s Going On with Cochrane’s Exercise Review Mess?
On September 4th, the Science for ME (S4ME) forum sent an open letter to Cochrane’s editor-in-chief, Karla Soares-Weiser, requesting the “immediate withdrawal or retraction” of “Exercise therapy for chronic fatigue syndrome,” a 2019 review. The review over-stated the evidence in favor of exercise therapies and has been widely and appropriately criticized for its seriously flawed…
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A Day in the Life of Anil van der Zee
It is May 12th–ME International Awareness Day. (Or ME/CFS International Awareness Day if you’re the US Centers for Disease Control and Prevention. In Washington, DC, #MEAction and Body Politic have organized a protest and press conference “to demand bold, urgent governmental action for the millions of people living with myalgic encephalomyelitis (ME), Long COVID, and…
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Why Are Exercise Studies for Long Covid Still Failing to Address PEM Adequately?
Note: I posted this on March 29th, and for some reason it disappeared from the site–so I am reposting it today. I have written previously about the issue of exercise studies for long Covid patients. As with the discredited PACE trial for the illness or cluster of illnesses currently being referred to as ME/CFS, the…
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After Maeve Boothby O’Neill’s Death, More Concerns About Severe ME Patients at NHS Hospitals
I recently wrote an article for Codastory.com about Maeve Boothby O’Neill, who died from complications of severe ME in October, 2021, after three separate admissions to her local National Health Service hospital in Exeter, England. During her hospital stays, she and her family fought with the hospital over the need for tube-feeding or an alternate…
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After Last Year’s Tub Talk, Here’s an Interview–Clothed–for #MEAction’s Podcast
The last time I was interviewed about my work, I was sitting in a bubble bath with the guy tossing questions at me. That was, of course, my appearance last April on Tub Talks with Damon, a web series in which my friend Damon Jacobs, a gay, sex-positive psychotherapist in New York City, conducts interviews…
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#MEAction’s Chronic Illness Survey; Patients’ Research Informs CDC’s Long-COVID Advice
New survey to assess links between chronic conditions Jaime Seltzer, #MEAction’s Director of Scientific & Medical Outreach, has been pretty busy lately. This week, she appeared on a panel at the World Health Organization’s Long COVID webinar—alongside no less than the distinguished and always affable Professor Sir Simon Wessely. Seltzer has also just been named…
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The CDC’s Stakeholder Meeting
The US Centers for Disease Control held one of its occasional briefings for ME/CFS stakeholders last week. I was unfortunately busy during that time, but #MEAction has posted a useful account of what was discussed, which you can read here. The #MEAction account includes short, helpful descriptions of a number of CDC initiatives, including efforts…