Institute of Medicine report

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Front cover of the report

The Institute of Medicine report on ME/CFS, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, was published on February 10 2015[1] by the National Academy of Medicine (known as the Institute of Medicine or IOM until June 2015), 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 | edit source]

  • "Between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome."
  • ME "is a medical-not a psychiatric or psychological — illness"
  • "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 | edit source]

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 | edit source]

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 | edit source]

Criticisms[edit | edit source]

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 | edit source]

Watch a recording of the report launch event.

Responses[edit | edit source]

Researchers and clinicians[edit | edit source]

Patient community[edit | edit source]

Centers for Disease Control and Prevention (CDC)[edit | edit source]

On July 12, 2018, the CDC featured the IOM Report in full on it's ME/CFS home page. The prevelance data "estimated 836,000 to 2.5 million Americans suffer from ME/CFS, but most of them have not been diagnosed"[11] are stated in the IOM report.[1] The report's diagnostic criteria is outlined in the healthcare providers section.[12]

Panel members[edit | edit source]

See also[edit | edit source]

Generally accepted criteria for diagnosing ME and ME/CFS[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. 1.01.1 Institute of Medicine; Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (Feb 10, 2015), Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, Washington, DC: The National Academies Press, doi:10.17226/19012 
  2. "The CFIDS Association Statement on the H.H.S. IOM Contract". Solve ME/CFS Initiative. Oct 10, 2013. Retrieved May 27, 2020. 
  3. Institute of Medicine: Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (2015). "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness". The National Academies Press. p. 222. ISBN 978-0-309-31692-7. Retrieved May 27, 2020. 
  4. Institute of Medicine: Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (2015). "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness". The National Academies Press. p. 223. ISBN 978-0-309-31692-7. Retrieved May 27, 2020. 
  5. Institute of Medicine: Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (2015). "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness". The National Academies Press. p. 227. ISBN 978-0-309-31692-7. Retrieved May 27, 2020. 
  6. Institute of Medicine: Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (2015). "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness". The National Academies Press. p. 228. ISBN 978-0-309-31692-7. Retrieved May 27, 2020. 
  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. White, P. D. (Apr 2016). "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Institute of Medicine. (Pp. 282; ISBN 978-0-309-31689-7; $£29.99; paperback.) The National Academies Press: Washington. 2015". Psychological Medicine. 46 (6): 1343–1343. doi:10.1017/S0033291715002366. ISSN 0033-2917. 
  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, 94: 73–81, doi:10.1016/j.jpsychores.2017.01.005 
  10. "Per Fink complains about IOM ME/CFS report". Health Rising's Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Forums. Retrieved May 27, 2020. 
  11. "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | CDC". www.cdc.gov. Apr 13, 2020. Retrieved May 27, 2020. 
  12. "IOM 2015 Diagnostic Criteria | Diagnosis | Healthcare Providers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | CDC". www.cdc.gov. Nov 19, 2019. Retrieved May 27, 2020. 
  13. Dellwo, Adrienne (Nov 24, 2018). "Myalgic Encephalomyelitis or Chronic Fatigue Syndrome". Verywell Health. Retrieved Nov 28, 2018. 
  14. Carruthers, Bruce M.; Jain, Anil Kumar; De Meirleir, Kenny L.; Peterson, Daniel L.; Klimas, Nancy G.; Lerner, A. Martin; Bested, Alison C.; Flor-Henry, Pierre; Joshi, Pradip; Powles, A C Peter; Sherkey, Jeffrey A.; van de Sande, Marjorie I. (2003), "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols" (PDF), Journal of Chronic Fatigue Syndrome, 11 (2): 7-115, doi:10.1300/J092v11n01_02 
  15. Carruthers, Bruce M.; van de Sande, Marjorie I.; De Meirleir, Kenny L.; Klimas, Nancy G.; Broderick, Gordon; Mitchell, Terry; Staines, Donald; Powles, A. C. Peter; Speight, Nigel; Vallings, Rosamund; Bateman, Lucinda; Baumgarten-Austrheim, Barbara; Bell, David; Carlo-Stella, Nicoletta; Chia, John; Darragh, Austin; Jo, Daehyun; Lewis, Donald; Light, Alan; Marshall-Gradisnik, Sonya; Mena, Ismael; Mikovits, Judy; Miwa, Kunihisa; Murovska, Modra; Pall, Martin; Stevens, Staci (Aug 22, 2011). "Myalgic encephalomyelitis: International Consensus Criteria". Journal of Internal Medicine. 270 (4): 327–338. doi:10.1111/j.1365-2796.2011.02428.x. ISSN 0954-6820. PMC 3427890Freely accessible. PMID 21777306. 
  16. Clayton, Ellen Wright; Alegria, Margarita; Bateman, Lucinda; Chu, Lily; Cleeland, Charles; Davis, Ronald; Diamond, Betty; Ganiats, Theodore; Keller, Betsy; Klimas, Nancy; Lerner, A Martin; Mulrow, Cynthia; Natelson, Benjamin; Rowe, Peter; Shelanski, Michael (2015). "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness" (PDF). nationacademies.org. 

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