From Science magazine, 29 October 2015 (Story by Jon Cohen).
In the wake of mounting criticism that researchers pay scant attention to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), the U.S. National Institutes of Health (NIH) today announced that it is increasing efforts to figure out what causes the baffling illness and to find treatments for it.
NIH Director Francis Collins told Science that some investigators have long shied away from studying ME/CFS because it has been a “tumultuous” research arena, with high-profile leads that imploded and a vocal advocacy community. The attitude among many researchers has been “maybe this is an unsolvable problem, let’s just work on something else,” Collins says. “I’m happy to say we’re countering that attitude rather strongly here.”
NIH has not committed new funding to ME/CFS research, but its Clinical Center plans to launch a study of people shortly after they develop related symptoms from a probable but as yet unidentified infection. (Symptoms of the disease range from neurological and cognitive problems to immune and sleep abnormalities.) NIH also is moving oversight of ME/CFS research from the Office of Research on Women’s Health to the National Institute of Neurological Disorders and Stroke (NINDS).
Disease advocate Robert Miller, whom Collins called this morning before making the announcement, applauds both the decision and the patient population for its effective lobbying. “For the patient population this is huge,” says Miller, a former coal miner who lives in Reno, Nevada, and developed the disease in 1982 after a bout with the flu. “One of the really key things is that we’re basically being moved out of Siberia,” says Miller, referring to the shift from the poorly funded women’s health branch to NINDS.
NIH currently spends only $5 million on the disease, which the U.S. Centers for Disease Control and Prevention estimates affects more than 1 million Americans. Its “renewed research focus” comes in the wake of an Institute of Medicine (IOM) report released in February that said “remarkably little research funding” had gone toward understanding causation, pathophysiology, and treatment of ME/CFS. Collins says the IOM report—which also called for renaming ME/CFS “systemic exertion intolerance disease,” a moniker that has received little traction—is only one factor behind the new NIH agenda. “I’ve been troubled about the lack of answers we have for this condition since I became NIH director,” says Collins, who took the job in 2009.
Miller says “it would be nice if they had put a dollar amount” on NIH’s new research push, but he says he was convinced by Collins’s assurance that the purse strings will loosen. “In the past, they said, ‘There’s not enough science to put more money into it,’” he says. “They’re not doing that now.”
Collins says NINDS Director Walter Koroshetz is “determined to move pretty fast on this,” including soon issuing a new request for proposals to extramural researchers. “Give us a chance to prove we’re serious, because we are,” Collins says.