Institute of Medicine report

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Front cover of the report

The 2015 Institute of Medicine report on ME/CFS, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, was published on February 10 2015.[1] The National Academy of Medicine (known as the Institute of Medicine or IOM until June 2015) is an American non-profit, non-governmental organization.

On 23 September 2013 the U.S. Department of Health and Human Services (HHS), the National Institutes of Health, the Agency for Healthcare Research and Quality, the Centers for Disease Control & Prevention, the Food and Drug Administration, and the Social Security Administration announced their intention to ask the Institute of Medicine (IOM) to convene an expert committee to examine the evidence base for ME/CFS.[2]

Key findings[edit]

  • "Between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome."
  • "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."
  • "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."
  • "ME/CFS can severely impair patients’ ability to conduct their normal lives."

Recommendations[edit]

Recommendation 1: "Physicians should diagnose myalgic encephalomyelitis/chronic fatigue syndrome if diagnostic criteria are met following an appropriate history, physical examination, and medical work-up. A new code should be assigned to this disorder in the International Classification of Diseases, Tenth Revision (ICD-10), that is not linked to “chronic fatigue” or “neurasthenia.”"[3]

Recommendation 2: "The Department of Health and Human Services should develop a toolkit appropriate for screening and diagnosing patients with myalgic encephalomyelitis/chronic fatigue syndrome in a wide array of clinical settings that commonly encounter these patients, including primary care practices, emergency departments, mental/behavioral health clinics, physical/occupational therapy units, and medical subspecialty services (e.g., rheumatology, infectious diseases, neurology)."[4]

Recommendation 3: "A multidisciplinary group should reexamine the diagnostic criteria set forth in this report when firm evidence supports modification to improve the identification or care of affected individuals. Such a group should consider, in no more than 5 years, whether modification of the criteria is necessary. Funding for this update effort should be provided by nonconflicted sources, such as the Agency for Healthcare Research and Quality through its Evidence-based Practice Centers process, and foundations."[5]

Recommendation 4: "The committee recommends that this disorder be renamed “systemic exertion intolerance disease” (SEID). SEID should replace myalgic encephalomyelitis/chronic fatigue syndrome for patients who meet the criteria set forth in this report."[6]

Cost[edit]

The U.S. Department of Health and Human Services contracted to paid one million (US) dollars for this IOM contract. The monies were allocated from the Fiscal Year 2013 budget.[7]

Read the report[edit]

Criticisms[edit]

Peter White, a British psychiatrist and co-author of the PACE trial, criticised the report.[8]

Per Fink, a Danish psychiatrist, who believes ME/CFS is a functional somatic syndrome[9], wrote a letter of complaint.[10]

Press conference[edit]

Watch a recording of the report launch event.

Responses[edit]

Researchers and clinicians[edit]

Patient community[edit]

Panel members[edit]

Learn more[edit]

See also[edit]

References[edit]

  1. Institute of Medicine (USA); Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (10 February 2015), Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness 
  2. HHS Announcement on the IOM Study on Diagnostic Criteria for ME/CFS September 23, 2013
  3. http://www.nap.edu/read/19012/chapter/9#222
  4. http://www.nap.edu/read/19012/chapter/9#223
  5. http://www.nap.edu/read/19012/chapter/9#227
  6. http://www.nap.edu/read/19012/chapter/9#228
  7. https://www.hhs.gov/ash/advisory-committees/cfsac/notices/faqs-on-an-hhs-contract-with-the-iom-to-recommend-clinical-diagnostic-criteria-for-me-cfs/index.html
  8. Institute of Medicine report - Review (8 December 2015, see also Institute of Medicine report)
  9. Schröder, Andreas; Ørnbøl, Eva; Jensen, Jens S.; Sharpe, Michael; Fink, Per (2017), "Long-term economic evaluation of cognitive-behavioural group treatment versus enhanced usual care for functional somatic syndromes", Journal of Psychosomatic Research, doi:10.1016/j.jpsychores.2017.01.005 
  10. Per Fink complains about IOM ME/CFS report


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From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history