ME
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Research updates, October 14
A large electronic health records study found SARS-CoV-2 infection is associated with elevated risks of Human Papillomavirus (HPV)-related cancer.
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Long COVID is not FND, but some patients are getting diagnosed with it. Here’s what to do if it happens to you.
Some people with Long COVID are receiving potentially unhelpful diagnoses of functional neurological disorder (FND), a condition in which people experience neurological symptoms that cannot be attributed to known or currently identifiable pathophysiological causes.
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Research updates, August 12
People with myalgic encephalomyelitis (ME) have significant genetic differences in their DNA, according to a preprint shared this week from the DecodeME study.
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Posthumous album of singer Kara Jane released on Severe ME Awareness Day
This month, on August 8, the posthumous album of a young singer was released to mark Severe ME Awareness Day. Kara Jane, from Derbyshire in the U.K., had myalgic encephalomyelitis (ME) for most of her life and died in January 2023 at just 32 years old. Despite a life of immense pain and restriction, Kara…
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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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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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Minnesota’s unique Long COVID program retains funding following advocacy
Advocates pushed back against threatened funding cuts and won continued support for Long COVID work in the Minnesota legislature’s final 2026–27 budget.
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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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A new aid in the doctor’s office: Introducing the Long COVID Treatment Guide
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Where have all the Long COVID clinics gone?
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National COVID-19 trends, March 10
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Research updates, March 10
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My child and I both have Long COVID. Even in COVID-aware spaces, we are excluded because of their pre-existing disability.
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