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A New Name for Chronic Fatigue Syndrome?
Between 836,000 and 2.5 million Americans have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion.
The Department of Health and Human Services, the National Institutes of Health, the Agency for Healthcare Research and Quality, the Centers for Disease Control and Prevention, the FDA, and the Social Security Administration asked the Institute of Medicine (IOM) to convene an expert committee to examine the evidence base for ME/CFS. In its report, the IOM has proposed new criteria to facilitate the diagnosis of ME/CFS, and has suggested a new name for the disease.
The report’s primary message is that ME/CFS is a serious, chronic, complex, systemic disease that can profoundly affect the lives of patients. Many people with ME/CFS report difficulty completing everyday tasks, and at least one-quarter have been home- or bed-bound at some point as a result of their illness. The total economic costs of ME/CFS are estimated at $17 billion to $24 billion annually in the U.S.
On the basis of a comprehensive literature review and input from patient, advocacy, and research communities, the committee presents new diagnostic criteria for ME/CFS focused on the central symptoms of the disease.
According to the committee, a patient must have the following three symptoms to qualify for a diagnosis of ME/CFS: 1) a substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest; 2) post-exertional malaise, and 3) unrefreshing sleep. At least one of the two following manifestations is also required: 1) cognitive impairment or 2) orthostatic intolerance.
Impaired day-to-day function, post-exertional malaise (the worsening of symptoms after physical, cognitive, or emotional activity), and unrefreshing sleep are almost universally present in ME/CFS patients. Therefore, the committee considers these to be the three core symptoms of the disease.
According to the report, many ME/CFS patients believe that the term “chronic fatigue syndrome” perpetuates misunderstanding of the illness and dismissive attitudes from health care providers and the public. The committee agrees with this assessment and has proposed the name “systemic exertion intolerance disease” (SEID) to replace ME/CFS. The new name, the committee says, captures a central characteristic of the disease: the fact that exertion of any sort — physical, cognitive, or emotional — can adversely affect patients in many organ systems and in many aspects of their lives.
Source: IOM; February 10, 2015; and IOM Report; February 2015.