ME/CFS
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Long COVID advocacy is more than lobbying Congress: Here are some ways to get involved
People with infection associated chronic conditions (IACCs) use a broad range of strategies to fight for awareness and better care.
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Research updates, October 28
A small mechanistic study in Frontiers in Immunology analyzed chronic inflammation in COVID-19. Researchers assessed over 70,000 blood cells from eight participants across different disease states.
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Research updates, October 21
A clinical trial for the anti-inflammatory drug Colchicine did not find the drug effective for Long COVID, according to a new study published in JAMA Internal Medicine. The randomized trial included 346 participants in India who took at least 0.5 milligrams once or twice per day, or a placebo, for 52 weeks.
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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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Still Here, August 11: Links and transcript
In this episode of Still Here: Comparing and contrasting the BC 007 and rapamycin Long COVID and ME clinical trial designs.
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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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Still Here, August 6: Links and transcript
In this episode of Still Here: Recapping the Patient-Led Research Fund summer 2025 webinar.
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Still Here, July 24: Links and transcript
In this episode of Still Here: Contributing writer Simon Spichak discusses what experts say are Canada’s “contradictory” and “concerning” latest guidelines for Long COVID, the CAN-PCC.
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