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] 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 | 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.[12] The report's diagnostic criteria is outlined in the healthcare providers section.[13]

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. 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. 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)
  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
  11. Myalgic encephalomyelitis/chronic fatigue syndrome
  12. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness - Feb 10, 2015
  13. IOM 2015 Diagnostic Criteria - CDC
  14. Dellwo, Adrienne (Nov 24, 2018). "Myalgic Encephalomyelitis or Chronic Fatigue Syndrome". Verywell Health. Retrieved Nov 28, 2018. 
  15. 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 
  16. 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. 
  17. 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. 

ME/CFS - An acronym that combines myalgic encephalomyelitis with chronic fatigue syndrome. Sometimes they are combined because people have trouble distinguishing one from the other. Sometimes they are combined because people see them as synonyms of each other.

Myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

Myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

Myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

Chronic fatigue (CF) - Persistent and abnormal fatigue is a symptom, not an illness. It may be caused by depression, multiple sclerosis, fibromyalgia, chronic fatigue syndrome or many other illnesses. The term "chronic fatigue" should never be confused with the disease chronic fatigue syndrome.

Systemic exertion intolerance disease (SEID) - A term for ME/CFS that aims to avoid the stigma associated with the term "chronic fatigue syndrome", while emphasizing the defining characteristic of post-exertional malaise (PEM). SEID was defined as part of the diagnostic criteria put together by the Institute of Medicine (IOM) report of 10 February 2015.

Canadian consensus criteria (CCC) - A set of diagnostic criteria used to diagnose ME/CFS, developed by a group of practicing ME/CFS clinicians in 2003. The CCC is often considered to be the most complex criteria, but possibly the most accurate, with the lowest number of patients meeting the criteria. Led to the development of the International Consensus Criteria (ICC) in 2011.

Cognition - Thought processes, including attention, reasoning, and memory.

The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.