鐵鉢の中へも霰
teppachi no naka e mo arare

into my
iron begging bowl, too
hailstones

—Santōka Taneda

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Joined 2 years ago
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Cake day: June 13th, 2023

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  • For example, myalgic encephalomyelitis (sometimes referred to as chronic fatigue syndrome) has been dismissed and under-researched for decades. The lack of research has perpetuated a limited understanding of the underlying biology, a lack of diagnostic testing, a lack of respect for patient experiences and an embarrassing lack of action. Research funding is extremely low relative to the burden of the disease and its prevalence.

    About half of long COVID patients also meet the diagnostic criteria for myalgic encephalomyelitis. By our sheer number, our advocacy for more research and clinical trials should be harder to dismiss.

    This is dismissed and underfunded world-wide.

    The status quo - pretending it’s all in your head - is in the interests of insurance companies (and governments with disability welfare systems).