I’m disabled. Can NIH spare a few dimes?


Lately, though, my love for your august institution has been strained. You see, I’ve been felled by the most forlorn of orphan illnesses. The most accurate name for it is myalgic encephalomyelitis, which means “painful inflammation of the brain and spine.” (Yes, it is painful, and, yes, there’s strong evidence of neuroinflammation.) At the NIH and elsewhere, it is instead called chronic fatigue syndrome. That’s a terribly vague and dismissive moniker for so serious an illness, and one that needs to be retired. Fatigue is not the primary or most troubling symptom for most people with ME…

Columbia University’s Ian Lipkin is searching for infectious triggers, and has reported severe immune problems in patients. Columbia received $150 million in NIH grants in 2015; Lipkin’s operation gets a big chunk of that not for ME/CFS research but for finding viruses such as those that cause SARS and MERS. But when the famous virus hunter applied for a trifling $1 million for ME research, the NIH turned him down, twice. So spurned, Lipkin and colleague Mady Hornig recently resorted to eating habanero peppers to raise money as part of a social media ME Chili Challenge inspired by the hugely successful ALS Ice Bucket Challenge…

At Stanford University, prominent geneticist Ron Davis is searching for genetic risk factors. His investment is deeply personal, as his adult son — formerly a world-traveling photographer — is severely ill with ME and can no longer walk or talk…

At the same time, you could help things along by moving responsibility for ME from its long-term parking spot at the Office of Research on Women’s Health to one of the institutes with a substantial research budget, such as the National Institute of Neurological Disorders and Stroke. ME is clearly not a “women’s disease.” …

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