ME
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My husband and I have both had ME for decades, then our son got Long COVID
When our seventeen-year-old son Nick developed Long COVID after suffering a pulmonary haemorrhage in 2022, like any parents, we were devastated. But for us it hit harder. History was repeating itself — and it was something we had dreaded since having children.
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“Really pissed off”: Cochrane receives backlash from advocates and experts after abandoning ME/CFS review
For decades, Cochrane — formerly called the Cochrane Collaboration — has been known internationally for its systematic reviews of medical treatments and interventions. Now the U.K.-based charity is under fire for its clumsy handling of a thorny issue: the status of a flawed 2019 review of exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
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“Marching from home”: New rock musical embodies the challenges and resistance of people with energy-limiting diseases
Last weekend, a lucky group of disabled and chronically ill theatergoers in New York City attended a show that reflected their experiences and access needs. The new, non-narrative rock musical, called “Dan Fishback is Alive, Unwell, and Living in his Apartment,” ran for two sold-out performances at the Public Theater’s Joe’s Pub on Saturday and…
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Research updates, December 17
Editor’s note, December 19, 11am EST: The fourth summary has been updated to correct information about the patients who were autopsied. Related stories
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Advocacy groups suspend ties with U.K. charity The ME Association over chairman’s op-ed
Earlier this month, the chairman of the United Kingdom charity the ME Association, Neil Riley, published a controversial op-ed in the charity’s magazine arguing that many people with Myalgic Encephalomyelitis (ME) should increase their movement, counter to research and people’s lived experiences. People with the disease say Riley belittled the reality of severe ME and made…
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The trouble with recovery stories
Recovery stories have been popular in the media lately. Two recent stories have evoked a wide range of reactions among those with ME, with some gaining hope from them and supporting the right for everyone to share their experiences as they choose; and others feeling let down by narratives that arguably perpetuate negative stereotypes about…
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