Chronic fatigue syndrome has devastated the lives of hundreds of thousands of Americans. Everything about the condition—what to call it, how to identify and define it, what treatment is indicated—has been subject to dispute. In fact, the patient community has long been at odds with health officials, who have frequently framed the illness as largely psychosomatic. Yet abundant evidence has linked chronic fatigue syndrome to neurological, immunological and hormonal abnormalities.
Now a government-sponsored panel is seeking to develop a new set of diagnostic criteria for the disease. The Department of Health and Human Services commissioned the report last September from the Institute of Medicine (IOM), an independent organization whose well-regarded reports frequently inform government policy about controversial and complex issues.
But the panel, which recently held its first and perhaps only public hearing, is facing strong opposition from top researchers and doctors as well as many patients. They are upset because eight out of 15 panel members have no expertise in the illness. (In most circumstances, the diagnostic criteria for a condition are developed by the field’s top clinicians and researchers.) The critics fear that the panel will once again approach their illness from a psychiatric perspective, leading to misdiagnoses and to treatments that are effective for people suffering from depression and other mental health illnesses but not for those with chronic fatigue syndrome.
A bit of context: The word “fatigue”—as everyone who knows anything about the illness agrees—trivializes the experience of patients, who experience a profound exhaustion. Both experts and patients prefer a more scientific name: myalgic encephalomyelitis, which means “painful inflammation of the brain and spinal cord.” (In fact, the illness is now frequently referred to by the acronym ME/CFS; the IOM panel is also supposed to render a verdict on the name when it issues its findings early next year.)
No known cause of ME/CFS has been identified, and no medication is approved for treatment of the underlying disorder. Experts now believe that something, in most cases an acute viral infection, triggers an aggressive immune response that never shuts itself off. Because the illness is currently diagnosed through symptoms that can resemble cases of depression, distinguishing between the two can be difficult.
Leonard Jason, Ph.D., a professor of psychology at DePaul University and a respected ME/CFS researcher, offers perhaps the simplest approach to the task: He asks patients what plans they would make if their condition improved. A patient experiencing a depressive disorder, he explained, would likely have a hard time answering. “But someone with ME/CFS would probably begin making lists of all the things that they wanted to do,” he said in a recent interview with BuzzFeed about the issue.
One significant stumbling block for research and treatment has been the lack of a single set of agreed-upon criteria. Scientists in the U.S. and Europe have developed half a dozen or more case definitions over the years, for both research and clinical care. A 1994 definition developed by the Centers for Disease Control is considered out-of-date; it requires six months of fatigue and four out of a grab-bag of eight of the common symptoms.
Many patients, doctors and researchers prefer a 2003 version developed by leading clinicians and scientists. Unlike the Centers for Disease Control and Prevention (CDC) definition, this version requires the presence of exhaustion but also of an unusual symptom called “post-exertional malaise”—poor recovery of energy after modest or minimal physical effort. Many patients and experts consider this, not fatigue per se, to be the cardinal symptom of the illness. The 2003 definition also requires the presence of sleep disturbances and cognitive dysfunctions. The CDC definition mentions but does not require these symptoms.
Despite the IOM's reputation, patients and experts are concerned not only about who is on the panel but also about their charge. The government has requested that the panel consider a range of existing definitions, including some guidelines that appear to identify a population disproportionately suffering from depression. Although dozens of experts signed a letter urging the Department of Health and Human Services to adopt the 2003 criteria as the basis for further refinements and abandon the IOM study, Secretary Kathleen Sebelius flatly rejected the request.
The IOM, which is supposed to deliver its report early next year, is receiving approximately one million dollars for its work. Given that annual spending by the National Institutes of Health on ME/CFS is only five million dollars—much less than many illnesses that affect far fewer people—the experts noted in their letter that it made more sense to spend available funds on researching the pathogenesis of the disease rather than on new diagnostic guidelines. The experts and patients fear, understandably, that if the IOM panel adopts a fatigue-oriented definition that does not prioritize other symptoms, their efforts to gain respect and credibility for ME/CFS will have suffered a crippling blow.