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Mitra Ardron's avatar

Thanks - excellent article. I'm interested in how the symptoms of Long Covid as described above (CFS) interact with the generalized organ and system damage reported. So for example - is shortness of breath an effect of something like CFS, or is it lung/heart damage; or is it some combination? Even before being vaccinated, and being 60+, Long Covid seemed like far more of a worrying risk to me than death, but it was hard to get it through the heads of anti-vaxxers (I live near the epicenter of anti-science anti-vax conspiracy thinking in Australia) to think in terms of a significant chance of long-term constraints to their future freedom - to exercise, and live a normal life, rather than a low risk of dying.

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AndreaM's avatar

This is a good article.

The only thing that's missing is the "why do we know so little about Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?

(Please do not stop digging because of complexity)

Follow the money.

ME/CFS is the most underfunded disease to disease burden.

Despite a disease burden that is Double HIV with no treatment, funding at the NIH is only 7% of disease burden. The story is the same no matter which government in the world you choose. In the US, 13 Million dollars a year, for a disease that is having an economic impact of 51 Billion dollars a year.

"A study focusing on the disease myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), ∼75% of whom afflicted are women,2 found that disease to be the lowest funded (relative to disease burden) in the National Institutes of Health (NIH) portfolio.3,4 In carrying out the ME/CFS study, it was observed that some of the lowest funded diseases relative to disease burden were ones that affect primarily women. " (Mirin, A July 2021 https://doi.org/10.1089/jwh.2020.8682)

ME/CFS has been psychologized, meaning that money that could have been spent on biomedical science to find a diagnostic test, and treatments to slow progression of the disease have gone elsewhere.

Dr's are not educated to diagnose it, and treat the symptoms that can be treated which is part of the reason why suicide rates are so high (7 times normal population.

If you are a healthy, able bodied person who read this, please consider organizing a run/walk/bake sale for charities like Open Medicine Foundation which is leading the way in biomedical science for ME/CFS.

Thank you for your time.

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