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Here's your semi-regular reminder that the PROMIS fatigue scale is not validated for use in Long Covid but yet it's the primary endpoint in expensive trials everyone has put a lot of hoping into. Here's your other semi-regular reminder that PEM/PENE isn't just fatigue.

It isn’t that yet another drug trial in Long Covid showed negative results. It’s that yet another drug trial in Long Covid wasn’t adequately designed to show positive results. Lather. Rinse. Repeat.

We are live-streaming a full day of Dianna’s life, sharing what it’s like for someone suffering from severe MECFS. We will also be raising money for Open Medicine Foundation to support research and clinical trials for #LongCovid and #MECFS Time: Saturday, July 6th 2024, from 6:45 AM to 6:00

Science Alert: COVID's Hidden Toll: Full-Body Scans Reveal Long-Term Immune Effects “..compelling evidence that long COVID is tied to the persistence of the SARS-CoV-2 virus in the body and abnormal immune activity” sciencealert.com/covids-hidden-…

Science: “Tissue-based T cell activation and viral RNA persist for up to 2 years after SARS-CoV-2 infection” science.org/doi/10.1126/sc…

Super interesting paper with big implications for my fellow migraine sufferers! Very cool techniques too - using implanted GRIN lens to measure calcium signaling in peripheral ganglia. CSF as a form of volume transmission is 🤯

Last week Dianna Cowern participated in an 11 hour livestream to raise money and awareness for #LongCovid. Dianna has suffered with long covid for 2 years - she is completely bedbound and totally unable to care for herself. This is her husband Kyle, writing on her behalf.

MUTUAL AID REQUEST: A friend with #LongCovid is losing his housing and has been unable to access any local support services due to systemic barriers (such as ableist work requirements). Let's help him avoid staying in a shelter that further risks his health and safety. #pwLC

Researchers are feeling uneasy about the prospect of NIH budget cuts and politicization of science trib.al/k7Cxhhf

Hey folks! After a much-needed social media hiatus I'm working to migrate over to the other place. The COVID-conscious and disability communities are growing rapidly over there and the atmosphere is SO much better. Same handle, I hope you can join us!

Due to the poor air quality and purifier shortages in Southern California right now, we're opening our CA warehouse doors so people can get clean air gear as quickly as possible. Order online with the 20% off code "WAREHOUSE" for in-person pick up on Saturday, Jan 11. ☁️

Feels like a fitting time to play #Cyberpunk2077 for the first time, right? 😅