NIH announces new effort to tackle chronic fatigue syndrome in the Washington Post, by Lenny Bernstein, October 29
The director of the National Institutes of Health announced a new initiative Thursday to find a cause and treatment for chronic fatigue syndrome, the mysterious, debilitating condition that disables many of its more than 1 million sufferers.
Francis S. Collins said in an interview that medicine “desperately needs some new ideas” in the fight against the syndrome and the closely related neurological disorder myalgic encephalomyelitis. At the moment, there is no test, cause or treatment for the condition, which causes overwhelming, often disabling fatigue in more than a quarter of the people who suffer from it.
“There’s something going on here, and we ought to be able to come up with an answer with the tools we have,” Collins said.
Collins said the agency will move forward on two fronts. It will launch research at the NIH Clinical Center to intensively study a small number of individuals with the disorder, and will revive a working group focused on encouraging more research on the disorder outside NIH. But no budget for the efforts has been developed yet, Collins said.
[Chronic fatigue syndrome is a physical disorder, expert panel announces]
In February, the Institute of Medicine, the health arm of the National Academy of Sciences, declared the syndrome a “serious, debilitating”
physical disorder — not a psychological illness — in the hope of ending lingering beliefs that the condition was psychosomatic.
Other symptoms include joint and muscle pain, headaches, cognitive difficulties and problems with the immune and neurological systems. It often strikes after a flu-like illness or other infection.
NIH spending on the disorder has languished near the bottom of the research agency’s priorities. In July, Brian Vastag, a former Post reporter who suffers from the disorder, wrote passionately of the need for additional NIH research.
[I’m disabled. Can NIH spare a few dimes?]
Carol Head, president of the advocacy group Solve ME/CFS Initiative, said after the announcement that “we are thrilled. This is a disease that has been neglected by the federal government, frankly, for decades.”
Head said there is no doubt funding for research into the condition would have to increase substantially under the plan outlined by Collins, though she said her group looks forward to knowing how much will be spent.
Nevertheless, she said, “we think the steps that were taken…clearly indicate a sea change in the NIH’s commitment to this illness. And from everything we’ve heard, it’s coming from the top, from Dr.
Collins.”
Collins said that in recent years, research had focused on the idea that the syndrome was caused by a virus, which proved untrue and may have halted other promising areas of inquiry. The goal now is to “recruit some new bright ideas and idea generators” to the effort, he said.
NIH: NIH takes action to bolster research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Open Medicine Foundation comment: NIH Increases ME/CFS Research with New Initiative
Solve ME/CFS comment: NIH Announces New Efforts to Advance ME/CFS Research
