ME/CFS
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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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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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