science
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“A morale boost”: Looking ahead to the 2025 Keystone Symposia Long COVID conference with Hannah Davis
In August, leading Long COVID researchers will gather in Santa Fe, New Mexico for a major conference on Long COVID and other post-acute infection syndromes. The meeting, organized by Long COVID experts and hosted by the nonprofit Keystone Symposia, follows a similar conference in 2023 at which scientists presented novel, exciting studies. Managing editor Betsy…
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How volunteering to become a lab rat paid off
When I signed up for a clinical trial, I expected it to be thought provoking at best and onerous at worst. I didn’t expect it to change my life.
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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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Lisa McCorkell reflects on five years of Long COVID research, and leaving PLRC
Lisa McCorkell, one of the founders of the Patient-Led Research Collaborative (or PLRC), recently stepped down after five years co-leading the organization. The Sick Times co-founder and managing editor Betsy Ladyzhets spoke with McCorkell in an exit interview. She reflected on her time collaborating on formative Long COVID studies, advocating for federal funding, developing new…
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RECOVER grants for Long COVID pathobiology research are among those cut under new NIH directive
Some grants for Long COVID pathobiology research in the National Institutes of Health’s RECOVER program are among those rescinded by the federal government this week under a new order to cut all funding for COVID-related research. Up to 45 grants awarded in 2022 and 2023 may have been revoked, as well as more recent grants…
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Accurate statistics for ME and Long COVID are vital. That’s why I started a patient-led organization to “crunch” the diseases.
Since falling ill with myalgic encephalomyelitis (ME) in 2018, it has frustrated me greatly seeing organizations and especially governments repeating out-of-date statistics related to this disease — minimizing either the apparent number of sufferers (such as the much-repeated 250,000 figure for the number of ME patients in the UK) or our degree of suffering.
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False hope: In Sub-Saharan Africa, wars damage Long COVID research and surveillance
In summer 2023, clinical nurse Rino Da Costa was well into recruiting participants for a study to monitor Long COVID cases in Naquitengue, a village in Cabo Delgado, northern Mozambique. It was a promising research endeavor until a flaring of gunfighting sunk her efforts.
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We won’t avoid the next pandemic. But we can still prepare.
When a pandemic begins, so does the blame game. Early days of COVID-19 pointed fingers at wild meat markets and debunked lab leak conspiracies, and that crystallized a long-running narrative that outbreaks are generally humans’ fault; roll the dice enough times with wildlife and you’re bound to land on a plague. Problem is, generalizing that…
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“Really pissed off”: Cochrane receives backlash from advocates and experts after abandoning ME/CFS review
For decades, Cochrane — formerly called the Cochrane Collaboration — has been known internationally for its systematic reviews of medical treatments and interventions. Now the U.K.-based charity is under fire for its clumsy handling of a thorny issue: the status of a flawed 2019 review of exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
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