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IOM: ME/CFS costs economy $24b a year

A comprehensive review of research into chronic fatigue syndrome has concluded that the illness is serious, with a total economic cost in the US estimated at $17 to $24 billion annually.

In a report, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, the Institute of Medicine (IOM) sets out new criteria to define chronic fatigue syndrome and suggests the illness be renamed systemic exertion intolerance disease (SEID).

According to the IOM, between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome, commonly referred to as ME/CFS.

“This disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort. ME/CFS can severely impair patients’ ability to conduct their normal lives,” states the report.

“Yet many people struggle with symptoms for years before receiving a diagnosis. Fewer than one-third of medical school curricula and less than half of medical textbooks include information about ME/CFS.

“Although many health care providers are aware of ME/CFS, they may misunderstand the disease or lack knowledge about how to diagnose and treat it. Such gaps in understanding lead to delayed diagnoses and inappropriate management of patients’ symptoms.”

The IOM was chartered to convene an committee to examine the evidence base for ME/CFS by a number of US federal government agencies – the Department of Health and Human Services (HHS), the National Institutes of Health, the Agency for Healthcare Research and Quality, the Centers for Disease Control and Prevention, the Food and Drug Administration, and the Social Security Administration.

The report also contains proposed new diagnostic criteria the IOM committee believes will facilitate timely diagnosis and care and enhance understanding among health care providers and the public.

In addition, the IOM committee recommends that the name of the disease be changed—from ME/CFS to systemic exertion intolerance disease (SEID) to more accurately capture the central characteristics of the illness.

Understanding ME/CFS

The primary message of the committee’s report is that ME/CFS is a serious, chronic, complex, systemic disease that often 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 to $24 billion annually,” stated the IOM committee.

“Many health care 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. Misconceptions or dismissive attitudes on the part of health care providers make the path to diagnosis long and frustrating for many patients.”

The committee stressed that health care providers should acknowledge ME/CFS as a serious illness that requires timely diagnosis and appropriate care.

PHOTO: waiting by Michal Ziembicki

More

  • Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness [report]
  • Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness – Report Guide for Clinicians [Clinician’s Guide]
  • Institute of Medicine – Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness [website]
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Written by Russell Logan

Russell Logan worked as a magazine publisher and editor until forced into early retirement through ill health with ME. He has battled with moderate to severe ME for 25 years. He now lives in Noosaville, Australia.

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