ME/CFS
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Left without care: Many Long COVID clinics are closing down in the U.K.
Fewer than half of U.K. Long COVID clinics will stay open this year, according to research from the charity Long COVID Support. At their peak, there were 120 clinics across the U.K., but only 46 have confirmed they will remain open.
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Still Here, July 11: Links and transcript
In this episode of Still Here: Contributing writer Britta Shoot discusses the patchwork of care for people with complex chronic illnesses and how insurance providers create a lose-lose situation for patients and healthcare providers.
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Experts call new Canadian Long COVID guidelines “contradictory” and “deeply concerning”
Guidelines recommend exercise and therapy as treatments, following attempted influence from Paul Garner.
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Research updates, June 24
A new review paper published in Psychiatry and Clinical Neurosciences focuses on how Long COVID impacts the nervous and immune systems, and describes it as a neuroimmune condition.
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Still Here, June 16: Links and transcript
In this episode of Still Here: Disabled writer and photographer Megan E. Doherty talks about her recent op-ed covering Illinois advocates’ work on legislation that would ban mask bans in Illinois. And writer and artist Kelsey Simpkins discusses a gallery exhibit that opened last month in Colorado showcasing the work of artists with Long COVID.
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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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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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