ME/CFS
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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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Should people with Long Covid be donating blood?
In the fall of 2009, researchers at a lab in Reno, Nevada, said they detected a potentially transmissible virus in the blood of people with myalgic encephalomyelitis (ME). The study led the American Red Cross to ban blood donations from people with ME. The study was retracted in 2011 and the Red Cross guideline was…
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#MEAction launches campaign to educate healthcare providers about Myalgic Encephalomyelitis
#MEAction, the nonprofit organization advocating for people with myalgic encephalomyelitis (ME), has launched a campaign to educate healthcare providers about the disease, collaborating with medical schools across the U.S. The education campaign, called “Teach ME, Treat ME,” kicked off last week in time with #MillionsMissing 2024, an outreach event for ME that takes place in…
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Letters to the editors: Sen. Sanders’ “moonshot” legislation
Today, April 23, is the last day to submit comments to Senator Bernie Sanders’ office and the Senate Health, Education, Labor, and Pensions (HELP) Committee about draft legislation proposing $10 billion in funding for Long Covid research over the next 10 years. Following The Sick Times’ story last week about this proposed bill, we received…
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How patient-led research could speed up medical innovation
Compared with mainstream medical research that tends to focus on finding biological causes and disease cures, patient-led work is more often rooted in what’s immediately relevant to patients’ daily lives, like identifying symptom triggers or relievers. But the approach faces challenges — particularly a lack of funding and other research resources — as scientific institutions aren’t set up to…
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