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What’s happening this week, January 9

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Research

  • A new study in Nature Communications confirms what so many people with post-exertional malaise (PEM) have been saying for decades: exercise can make us worse. Researchers compared 25 people with Long Covid to 21 patients who recovered from Covid-19, after both groups completed 10-15 minutes on exercise bikes. Blood samples and skeletal muscle biopsies from the Long Covid with PEM group showed severe muscle damage, mitochondrial problems, and microclots compared to controls. Rob Wüst, the study’s lead, said the findings demonstrate that people with Long Covid should not undertake intense exercise. This study adds to the mountain of evidence that shows prescribing graded exercise therapy is medical malpractice for people who experience PEM.
  • Bad news: Paxlovid may not prevent the risk of Long Covid. A recent UCSF study in The Journal of Medical Virology, which included 1,600 people with Long Covid, found that the antiviral (nirmatrelvir/ritonavir) did not decrease the risk of Long Covid in a fully vaccinated cohort. “We expected that Paxlovid would be associated with a lower prevalence of Long Covid… but it is consistent with two other rigorously conducted studies finding no difference in post-Covid conditions between 4 and 6 months after infection,” Matthew Durstenfeld, one of the lead co-authors of the study, said in a statement. Metformin may be the only known drug to reduce the chances of Long Covid following Covid-19 infection, but still needs more robust research.
  • Lastly, the Patient-Led Research Collaborative published a new qualitative study in Social Science and Medicine describing barriers for people with Long Covid seeking to return to work. The study analyzed responses from an international cohort of 510 people with Long Covid and found that pwLC both want and need to return to work, that symptoms fluctuate depending on how jobs and homelife are organized, a strong stigma against Long Covid at work and in medical settings, and finally, that the support of medical providers is key to successful return-to-work. It is imperative that employers build flexibility and accommodations for workers who have these fluctuating symptoms, lead author Elisabeth Stelson said in a statement.

Events

  • Following the success of last year’s Long Covid Awareness Day social media campaign, Long Covid advocates are organizing “LC/DC,” a march in Washington D.C. on March 15, 2024.  The march will gather at the Lincoln Memorial starting at 11 AM EST, with an anticipated end at 4 PM. The march supports Long Covid Action Project’s letter asking for at least $23 billion in research funding, among other demands for support and recognition. For more information, check out the event’s website here or follow on Twitter/Instagram.
  • Last Friday, the National Institutes of Health hosted a webinar about lesser-studied pathologies in ME, as part of the agency’s ME/CFS Research Roadmap series. The event included discussion of connective tissue disorders, gastrointestinal dysfunction, reproductive health, Mast Cell Activation Disorders, and other under-studied conditions that may be co-diagnosed with ME and Long Covid. This was the first time that the NIH focused on these comorbidities, Julie Rehmeyer, one of the event’s speakers, shared on Twitter. A recording will be available on the webinar series website.

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