Trial By Error

Tag: MEAction

  • Time’s Health100 List Includes Leaders in Long Covid and ME/CFS

    Last week, Time magazine unveiled a list called the TIME100 Health—a selection of “leaders from across industries—scientists, doctors, advocates, educators, and policy-makers, among others—dedicated to creating tangible, credible change for a healthier population.” Time also wrote this: “Together, they are a reminder that many things are going right, and their work is enough to inspire…

  • Yet Another ME-Related Death

    It has been a season of loss. Two weeks ago, I posted an obituary for the much-loved ME patient advocate Beth Mazur, who co-founded #MEAction and suffered with the disease for years. Last October, I posted tributes to Celine Corsius from her parents and brother; Celine died by euthanasia under Dutch law, also after many…

  • Obituary for Beth Mazur

    By Brian Vastag Beth Anne Mazur, a fierce but unassuming advocate for people with a devastating — and devastatingly neglected — chronic illness, died on Dec. 21, 2023, in the mountains above Santa Fe, N.M. She was 47 years old.  Beth leaves behind a wide circle of dear friends; many partners in patient advocacy; a…

  • Julie Rehmeyer on the Heartbreaking Loss of Beth Mazur

    Beth Mazur was a long-time ME advocate and a co-founder of #MEAction. ME-world was shocked to learn on Friday–two days ago–that she was gone, at the unconscionably young age of 47. At the time, she was visiting New Mexico and Julie Rehmeyer, another patient and advocate. Words often fail at times like this. But Julie…

  • 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…

  • 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…

  • 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…

  • 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…

  • 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…

  • #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…

  • 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…