IOM committee calls for new criteria, name for chronic fatigue syndrome

Chronic fatigue syndrome is a serious, real disease, one that deserves a more accurate name — systemic exertion intolerance disease — and a new code in the International Classification of Diseases, 10th Edition, according to the Institute of Medicine.

“Many ME/CFS patients believe that the term ‘chronic fatigue syndrome’ perpetuates misunderstanding of the illness and dismissive attitudes from healthcare providers and the public,” the committee wrote in the report brief.

ME/CFS, which causes profound fatigue, sleep abnormalities, cognitive dysfunction, pain, autonomic manifestations and other symptoms that worsen with exertion, can severely impair patients’ ability to lead normal lives. Between 836,000 and 2.5 million Americans suffer from this disease, according to the report. However, the authors wrote, many wait years for a diagnosis, partly because many clinicians misunderstand the disease or lack information to diagnose or treat it.

“Many healthcare providers are skeptical about the seriousness of ME/CFS, mistake it for a mental health condition, or consider it a figment of the patient’s imagination,” the authors wrote in the report. “Misconceptions or dismissive attitudes on the part of healthcare providers make the path to diagnosis long and frustrating for many patients. The committee stresses that healthcare providers should acknowledge ME/CFS as a serious illness that requires timely diagnosis and appropriate care.”

To develop the new diagnostic criteria, the committee completed a comprehensive review of available evidence and also considered input from patients, advocates and researchers.

For a patient to be diagnosed with ME/CFS, all three of the following symptoms must be present:

A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social or personal activities accompanied by fatigue

Worsening of symptoms after physical, cognitive or emotional activity

Unrefreshing sleep

At least one of the following two symptoms also must be present:

Cognitive impairment

Orthostatic intolerance

To distinguish ME/CFS from other diseases, these symptoms must have persisted for at least six months, and the patient must be moderately, substantially or severely affected by them at least half of the time.

The committee wrote that clinicians should diagnose ME/CFS if the new criteria are met after a patient history, physical exam and medical work-up.

Recommendations in the report also call on the U.S. Department of Health and Human Services to develop a toolkit for evaluating and diagnosing patients in clinical settings including primary care offices, PT and OT clinics, EDs, behavioral and mental health clinics, and some specialty settings.

Included in the report is a table listing examples of patient descriptions, potential questions for taking medical histories or in-office questionnaires.

The authors call for more research, especially focusing on patients diagnosed using the new criteria. They also propose another review of the evidence after no more than five years.

“The primary message of this report is that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients,” the authors wrote. “It is ‘real.’ It is not appropriate to dismiss these patients by saying, ‘I am chronically fatigued, too.’”

The study was sponsored by HHS, the CDC, the National Institutes of Health, the Agency for Healthcare Research and Quality, the Food and Drug Administration and the Social Security Administration.

To read the full 282-page report, visit http://books.nap.edu/openbook.php?record_id=19012&page=1.

Report brief: www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdf