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Spring/Summer 2015 Vol. 15 Number 1

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Medical Misnomer

New Name and Diagnostic Criteria Needed for Chronic Fatigue Syndrome

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disease that has sparked considerable public debate for years. Doctors are often skeptical about the©kieferpix/iStock/Thinkstock condition or have difficulty diagnosing it. And those affected feel frustrated and dismissed, on top of the debilitating symptoms they experience. In fact, diagnosis has always been a problem; less than one-third of medical schools include ME/CFS-specific information in the curriculum. Sixty-seven percent to 77 percent of patients diagnosed with the disease said it took more than a year to receive a diagnosis; of these, about 29 percent said it took more than five years. Experts estimate that 84 percent to 91 percent of people with ME/CFS are undiagnosed, and as many as 2.5 million in the United States may suffer from the disease. In addition, the direct and indirect economic costs of ME/CFS to society have been estimated at $17 billion to $24 billion annually.

A recent report from the Academies concluded that ME/CFS is a legitimate, serious, and complex systemic disease that frequently and dramatically limits the activities of affected individuals. The study committee that authored the report recommended new diagnostic criteria that address the needs of health care providers, patients, and their caregivers.

"Diagnosing ME/CFS is often a challenge, and seeking and receiving a diagnosis can be frustrating due to the skepticism of health care providers about these patients and the serious nature of their disease," said committee chair Ellen Wright Clayton. "The new diagnostic criteria will make it easier for clinicians to recognize and accurately diagnose patients in a timely manner, as well as allow a large percentage of currently undiagnosed patients to receive appropriate care."

If the diagnostic criteria are met following an appropriate history, physical examination, and medical work-up, physicians should diagnose ME/CFS, the committee said.

Diagnosis requires that a patient have three core symptoms:

  • A substantial reduction or impairment in the ability to engage in pre-illness levels of activities that is accompanied by often profound fatigue of new or definite onset, not the result of ongoing excessive exertion and not substantially alleviated by rest
  • The worsening of patients' symptoms after any type of exertion -- such as physical, cognitive, or emotional stress -- known as post-exertional malaise
  • Unrefreshing sleep
At least one of the two following manifestations is also required:
  • Cognitive impairment
  • The inability to remain upright with symptoms that improve when lying down -- known as orthostatic intolerance
These symptoms should persist for at least six months and be present at least half the time with moderate, substantial, or severe intensity to distinguish ME/CFS from other diseases.

The committee, along with many ME/CFS researchers and patients, believe the term "chronic fatigue syndrome" perpetuates misunderstanding of the illness and dismissive attitudes from health care providers and the public. The term "myalgic encephalomyelitis" was also deemed inappropriate by the committee, because myalgia, or muscle pain, is not a core symptom of the disease, and because there is inconclusive evidence of brain inflammation in ME/CFS patients. It suggested renaming the disorder to Systemic Exertion Intolerance Disease (SEID), which captures the characteristic that any exertion can adversely affect several organ systems and other aspects of patients' lives.

The committee also noted that more research on ME/CFS is needed -- especially given the number of people affected -- because too little is known about the causes, development, and progression of the disease, or about effective treatment. Future research could lead to findings that refine the diagnostic criteria and understanding of ME/CFS subtypes. A multidisciplinary group should re-examine the proposed criteria after five years or sooner if firm evidence supports the need for modification.

-- Jennifer Walsh

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Board on the Health of Select Populations, Institute of Medicine (2015, 304 pp.; ISBN 978-0-309-31689-7; available from the National Academies Press, tel. 1-800-624-6242; $55.00 plus $5.00 shipping for single copies).

The committee was chaired by Ellen Wright Clayton, Craig-Weaver Professor of Pediatrics and professor of law at Vanderbilt University, Nashville, Tenn. The study was sponsored by the Office on Women's Health within the U.S. Department of Health and Human Services, National Institutes of Health, Centers for Disease Control and Prevention, U.S. Food and Drug Administration, Agency for Healthcare Research and Quality, and U.S. Social Security Administration.

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