ME
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Research updates, May 27
A large study in Nature Genetics found a genetic risk factor for developing Long COVID. Researchers studied genetics data from 6,450 participants with Long COVID and over a million population controls across 16 countries, leading to the discovery that a variant near the FOXP4 gene increased the risk of the disease by about 60%.
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Avoiding caregiver burnout: Wisdom for the ME and Long COVID community
Many caregivers spend so much time caring for their loved ones that they neglect themselves and burn out. Having experienced burnout myself, I encourage all caregivers to take intentional actions to strengthen their resilience. Over the years, I’ve learned invaluable mindset, emotional, physical, and spiritual strategies to strengthen my resilience so that when challenges arise,…
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“Millions Missing” protest at the Capitol demands myalgic encephalomyelitis funding, social support
Myalgic encephalomyelitis (ME), Long COVID, and other chronic disease advocates demonstrated outside the Capitol Building in Washington, D.C., this afternoon. Organized by the advocacy group #MEAction, demonstrators demanded that the federal government fund ME research and preserve vital social support systems like Medicaid and telemedicine.
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Minnesota House budget proposes eliminating state Long COVID program
Cuts could end Long COVID research, communications, and grants in Minnesota, which has been a leader in state-level public health responses to the crisis.
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This surgery fuses people’s skulls to their spines to treat a condition overlapping with myalgic encephalomyelitis
A growing number of doctors agree that a minority of people with severe ME are like Brea: Some of their symptoms are caused by cranio-cervical instability linked to connective tissue disorders. Viruses including SARS-CoV-2 have been shown to degrade connective tissue, Ruhoy points out, which could be a big issue for people with Long COVID…
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“It’s like torture”: The tilt table test could be risky for many people with Long COVID
“The tilt table test is likely to be contraindicated in people with severe ME/CFS and related conditions,” Harvey said. Studies show about half of all Long COVID patients meet the diagnostic criteria for ME, a disease marked by debilitating post-exertional malaise (PEM). Harvey is not alone. A dozen people with ME and Long COVID interviewed…
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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, March 25
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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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