CFS/ME Is A Legitimate Disease That Needs Proper Diagnosis And Treatment, Says IOM; Report Identifies Five Symptoms To Diagnose Disease

National Academies


From The National Academies.


WASHINGTON – Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — commonly referred to as ME/CFS — is a legitimate, serious, and complex systemic disease that frequently and dramatically limits the activities of affected individuals, says a new report from the Institute of Medicine.  The committee that wrote the report developed new diagnostic criteria for the disorder that includes five main symptoms.  In addition, it recommended that the disorder be renamed “Systemic Exertion Intolerance Disease” and be assigned a new code in the International Classification of Diseases, Tenth Edition.


“Diagnosing ME/CFS often is 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, Craig-Weaver Professor of Pediatrics and professor of law at Vanderbilt University.  “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.”


Between 836,000 and 2.5 million Americans suffer from ME/CFS, and an estimated 84 percent to 91 percent of people with ME/CFS are not diagnosed.  The disease’s symptoms can be treated, even though a cure does not exist.  Its cause remains unknown, although in some cases symptoms have been triggered by an infection.  Less than one-third of medical schools include ME/CFS-specific information in the curriculum.  Sixty-seven percent to 77 percent of patients said it took more than a year to receive a diagnosis; about 29 percent of these patients said it took more than five years.  The direct and indirect economic costs of ME/CFS to society have been estimated at $17 billion to $24 billion annually, $9.1 billion of which has been attributed to lost household and job productivity.


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