This story has been updated.
The National Institutes of Health announced on Thursday that it will strengthen its efforts to find the roots of a mysterious disorder known as Chronic Fatigue Syndrome, or Myalgic Encephalomyelitis. Researchers from a number of the agency’s institutes will design a clinical study involving individuals who developed crippling fatigue and other symptoms after an acute infection. The agency may also increase the funding dedicated to the disorder from its current level of about $5 million annually, less than the amount devoted to hay fever.
“The effort aims to take advantage of the NIH Clinical Center, the largest research hospital in the world, to try to carry out every kind of imaginable analysis of the immune system, neurological system … metabolism … all of the things you'd want to know to try to get a handle on what is driving this very mysterious, puzzling disorder,” the NIH director Francis Collins said in an interview. “Given the seriousness of the condition, I don't think we have focused enough of our attention on this.”
Roughly 1 million Americans are afflicted with CFS, which has no known cause or cure and can manifest as everything from cognition problems to severe pain. Most sufferers stop working, and some are left bed-bound.
The initiative will likely come as good news to the vocal community of CFS patient-activists, many of whom feel their condition has been ignored by the agency. It was relegated, for example, to the Office of Research on Women's Health, even though it affects both genders. The new CFS initiative will have upgraded prestige and visibility, Collins said, falling under the authority of Walter J. Koroshetz, the director of the National Institute of Neurological Disorders and Stroke, along with Vicky Holets Whittemore, the NIH representative to the U.S. Department of Health and Human Services’ Chronic Fatigue Syndrome Advisory Committee.
“This is a big deal,” said Brian Vastag, a former Washington Post reporter who contracted CFS in 2012 and is now disabled. Vastag wrote an impassioned op-ed calling for more research into his ailment this summer. “For 30 years, the NIH has ignored this illness. The fact that they are going to bring patients into Building 10 and study them with the latest tools is big.”
The NIH researchers will collaborate with CFS experts from around the country. Collins could not say yet how much money would be devoted to the disease under this new model, but did say he anticipates a jump from the current level.
“Is it good news for us? Potentially yes,” said W. Ian Lipkin, the director of the Center for Infection and Immunity at Columbia University. Lipkin is currently investigating the role of viruses, bacteria, and fungi in the immune response of CFS patients, and he will likely work with the new NIH group. “The function is the budget. [But] it means it's moved toward the front of the stove.”
Likely beginning early next year, NIH will begin recruiting dozens of participants who were previously healthy before suffering an acute illness that left them permanently impaired. It’s this pattern—a precipitous fall from good health following a seemingly minor infection—that seems to unite the stories of many CFS patients.
Collins, who has a longstanding interest in rare diseases, said he has wanted to investigate the condition for years. But in 2009, when the journal Science retracted a prominent paper linking a specific retrovirus to the disease because its findings could not be replicated, scientific interest in CFS stalled, he said.
“A lot of the researchers who had gotten interested stepped away,” he said. “It was discouraging to see what was a bright moment of opportunity slip away. But I've continued to think about this, worry about it.”
Collins said the CFS group will use brand-new technology, such as single-cell biology, to look at individual immune cells that might be behind the disease. He thinks exploring various aspects of CFS might shed light on other mysterious medical phenomena, like the fatigue that many chemotherapy patients experience.
“If we could figure out what is the physiological basis of this profound fatigue, perhaps that would have insights into other aspects of human experience,” he said.