Dear Dr. Collins: I’m Disabled. Can the N.I.H. Spare a Few Dimes?
Three years ago, a sudden fever struck veteran science writer Brian Vastag on a blue-sky Wisconsin morning. He’s been sick ever since. Now cognitively and physically disabled, he lives on the island of Kauai. On Brian’s third “illiversary,” he presents an opportunity to National Institutes of Health Director Francis Collins.
Dear Dr. Collins,
You might recall the last time we spoke. It was January 2013, and I was working as a science reporter at The Washington Post.
I was working from home that gray day because I had little choice. I was mostly bedbound then, seven months after a sudden fever had knocked me prostrate. My legs were so weak that climbing the stairs to my home office required pulling myself up the railing hand-over-hand. My brain was so sluggish I asked few questions of you. The ones I managed to croak out were poor, no doubt.
Too sick to work, I did anyway. I loved my job at the Post - not an easy gig to come by - and I was desperate to keep it.
…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 N.I.H. 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.
On the list of illnesses the N.I.H. studies, M.E. (listed as “M.E./C.F.S.”) is near the bottom in funding, ranked 231 out of 244. It received $5 million in 2014, less than hay fever, which cripples no one. That’s not enough money to equip a laboratory and run it for a year. This abject neglect - or sustained prejudice, or maybe both - stretches back a full three decades at the N.I.H. (For a detailed history of how this sad state came to be, read Hillary Johnson’s deeply-reported book Osler’s Web .)
No one has a good count of M.E. patients in the U.S. - the C.D.C. misspent funds earmarked for this purpose - but there’s plausible evidence that several hundred thousand people are disabled by it. That’s comparable to the burden of multiple sclerosis - the illness M.E. most closely resembles. N.I.H. funds $110 million in M.S. research each year, and a sustained government investment has been crucial in the development of a dozen F.D.A.-approved M.S. drugs. M.E. patients have no approved treatments.
Columbia University’s Ian Lipkin is searching for infectious triggers, and has reported severe immune problems in patients. Columbia received $150 million in N.I.H. grants in 2015; Lipkin’s operation gets a big chunk of that. But when the famous virus hunter applied for a trifling $1 million for M.E. research, the N.I.H. turned him down, twice. So spurned, Lipkin and colleague Mady Hornig recently resorted to eating habanero peppers to raise money.
