In the past, you've shown a soft spot for certain orphan diseases. Well, the history of ME is akin to having locked an entire orphanage in a cellar and bulldozing the house.On the list of illnesses the NIH studies, ME (listed as “ME/CFS”) 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 NIH (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 ME patients in the United States — the Centers for Disease Control and Prevention 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 ME most closely resembles. The NIH funds $110 million in MS research each year, and a sustained government investment has been crucial in the development of a dozen Food and Drug Administration-approved MS drugs. ME patients have no approved treatments. Diagnosis can be delayed for years, and misdiagnosis is common. (I was initially diagnosed with West Nile virus infection, a mistake due to a faulty blood test.)But ME is finally emerging from the basement. Brand-name institutions and big-time researchers now recognize the huge burden ME places on society: tens of billions in medical expenses, lost productivity and missing tax revenue each year. 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.
June 30, 2016 at 8:00 AM EDT