ME/CFS
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An international emergency task force is urgently needed for Severe Long COVID and ME crisis cases
Without one, Severe advocates are putting themselves at risk. It’s time for advocacy organizations to step up. Writer’s note: In this essay, I deliberately capitalize different categories of ME in order to give each the weight and dignity they deserve. I also choose to distinguish between the Sick and the Well to highlight our status…
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The history of ME deserves a late-night spotlight. That’s why we started the #JohnVsJonVsME campaign.
In a crisis-filled world, breaking through the noise requires creativity, strategy — and, occasionally, a really good meme. This is precisely why the #JohnVsJonVsME campaign began.
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Research updates, February 18
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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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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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Five reasons why the NIH should retract the “effort preference” claims in their intramural ME/CFS paper
In February, the National Institutes of Health (NIH) published a controversial paper that aimed to characterize myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS). The study, published in Nature Communications, took eight years and cost $8 million. Participants flew in from all over the country and went through intense testing on NIH’s Bethesda,…
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For people with severe Long COVID, medical care is out of reach
Getting medical help for any severity of Long COVID is challenging. The disease can manifest as over 200 different symptoms, ranging in severity from mildly impacting quality of life to completely debilitating. For those in the most severe categories — who are barely or completely unable to leave their beds — accessing quality care is…
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Research updates, September 3
Research updates for the week of September 3 include the role of blood clots in Long COVID, how the disease impacts people with preexisting disabilities, and blood tests for people with ME.
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