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What a tragedy. I hope they push out national changes so her death wasn’t a complete waste. Refusing a feeding tube is bananas.
Here in the US, the discourse around ME/CFS is changing significantly now that doctors are constantly encountering long COVID and sequelae of other viral illnesses. (Another great example of this phenomenon is the sequelae like eye and joint problems among Ebola survivors, which didn’t exist as a patient cohort until 2015.) It’s unfortunate that so many people have long COVID, but the volume of patients is definitely shaking up how doctors are thinking about “mystery illnesses.” When millions of people are following a pattern, and the sample sizes are big enough to prove things, things change. I hope that MS/CFS sufferers benefit from all of this new research and training.