Editing Institute of Medicine report

[[File:Iom report front.gif|right|frame|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<ref name="IOM2015MECFS">{{citation | last1 = Institute of Medicine | author-link=National Academy of Medicine | last2 = Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness | date = Feb 10, 2015 | url = https://www.nap.edu/catalog/19012/beyond-myalgic-encephalomyelitischronic-fatigue-syndrome-redefining-an-illness|doi=10.17226/19012|publisher=The National Academies Press|location=Washington, DC}}</ref> by the [[National Academy of Medicine]] (known as the [[Institute of Medicine]] or [[IOM]] until June 2015), an [[United States|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 and Prevention]], the [[Food and Drug Administration]], and the [[Social Security Administration]] announced their intention to ask the [[National Academy of Medicine|Institute of Medicine]] (IOM) to convene an expert committee to examine the evidence base for [[ME/CFS]].<ref>{{Cite web | url = https://solvecfs.org/the-cfids-association-statement-on-the-h-h-s-iom-contract/ | title = The CFIDS Association Statement on the H.H.S. IOM Contract | date = 2013-10-10 | website = Solve ME/CFS Initiative|language=en-US|access-date=2020-05-27}}</ref>

==Key findings==

*"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==
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.”"<ref>{{Cite book | title = "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness"|language=en | url =https://www.nap.edu/read/19012/chapter/9#222 | pages = 222|isbn=978-0-309-31692-7|edition=|volume=|title-link=|access-date=2020-05-27 | date = 2015 | publisher=The National Academies Press | last = Institute of Medicine: Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | first = | authorlink = |veditors=|others=|doi=|oclc=|quote=|archive-url=|archive-date=|location=|editor-last = |editor-first = |editor1-link=|editor-last2 = |editor-first2 = }}</ref>

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)."<ref>{{Cite book | title = "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness"|language=en | url =https://www.nap.edu/read/19012/chapter/9#223 | pages = 223|isbn=978-0-309-31692-7|edition=|volume=|title-link=|access-date=2020-05-27 | date = 2015 | publisher=The National Academies Press | last = Institute of Medicine: Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | first = | authorlink = |veditors=|others=|doi=|oclc=|quote=|archive-url=|archive-date=|location=|editor-last = |editor-first = |editor1-link=|editor-last2 = |editor-first2 = }}</ref>

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. [[National Institutes of Health funding|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."<ref>{{Cite book | title = "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness"|language=en | url =https://www.nap.edu/read/19012/chapter/9#227 | pages = 227|isbn=978-0-309-31692-7|edition=|volume=|title-link=|access-date=2020-05-27 | date = 2015 | publisher=The National Academies Press | last = Institute of Medicine: Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | first = | authorlink = |veditors=|others=|doi=|oclc=|quote=|archive-url=|archive-date=|location=|editor-last = |editor-first = |editor1-link=|editor-last2 = |editor-first2 = }}</ref>

Recommendation 4: "The committee recommends that this disorder be renamed “[[Systemic Exertion Intolerance Disease|systemic exertion intolerance disease]]” (SEID). SEID should replace myalgic encephalomyelitis/chronic fatigue syndrome for patients who meet the criteria set forth in this report."<ref>{{Cite book | title = "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness"|language=en | url =https://www.nap.edu/read/19012/chapter/9#228 | pages = 228|isbn=978-0-309-31692-7|edition=|volume=|title-link=|access-date=2020-05-27 | date = 2015 | publisher=The National Academies Press | last = Institute of Medicine: Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | first = | authorlink = |veditors=|others=|doi=|oclc=|quote=|archive-url=|archive-date=|location=|editor-last = |editor-first = |editor1-link=|editor-last2 = |editor-first2 = }}</ref>

==Cost==
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.<ref>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</ref>

==Read the report==

*[https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf Key facts] (two pages)
*[https://www.nap.edu/resource/19012/MECFS_ReportBrief.pdf  Report brief] (four pages)
*[https://www.nap.edu/catalog/19012/beyond-myalgic-encephalomyelitischronic-fatigue-syndrome-redefining-an-illness Download full report] (282 pages)
*[https://www.nap.edu/resource/19012/MECFS_DiagnosticAlgorithm.jpg Diagnostic Algorithm Chart]
*[https://www.nap.edu/resource/19012/MECFS_ProposedDiagnosticCriteria.jpg Proposed Diagnostic Criteria Chart]
*[http://www.nap.edu/read/19012/chapter/1 Read the full 282 page report online]
**[http://www.nap.edu/read/19012/chapter/1 Front matter]
**[http://www.nap.edu/read/19012/chapter/2 Summary]
**[http://www.nap.edu/read/19012/chapter/3 1. Introduction]
**[http://www.nap.edu/read/19012/chapter/4 2. Background]
**[http://www.nap.edu/read/19012/chapter/5 3. Current Case Definitions and Diagnostic Criteria, Terminology, and Symptom Constructs and Clusters]
**[http://www.nap.edu/read/19012/chapter/6 4. Review of the Evidence on Major ME/CFS Symptoms and Manifestations]
**[http://www.nap.edu/read/19012/chapter/7 5. Review of the Evidence on Other ME/CFS Symptoms and Manifestations]
**[http://www.nap.edu/read/19012/chapter/8 6. Pediatric ME/CFS]
**[http://www.nap.edu/read/19012/chapter/9 7. Recommendations]
**[http://www.nap.edu/read/19012/chapter/10 8. Dissemination Strategy]
**[http://www.nap.edu/read/19012/chapter/11 Public Session Agendas]
**[http://www.nap.edu/read/19012/chapter/12 GRADE Grid Template]
**[http://www.nap.edu/read/19012/chapter/13 Disability in ME/CFS]
**[http://www.nap.edu/read/19012/chapter/14 Questionnaires and Tools That May Be Useful for Assessing ME/CFS Symptoms]
**[http://www.nap.edu/read/19012/chapter/15 Biographical Sketches of Committee Members, Consultants, and Staff]

==Criticisms==

[[Peter White]], a British psychiatrist and co-author of the [[PACE trial]], criticised the report.<ref>{{Cite journal | last = White | first = P.D. | authorlink = Peter White | date = Apr 2016 | title = 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. | url = https://www.cambridge.org/core/product/identifier/S0033291715002366/type/journal_article|journal=Psychological Medicine|language=en|volume=46|issue=6|pages=1343–1343|doi=10.1017/S0033291715002366|issn=0033-2917|pmc=|pmid=|access-date=|quote=|via=}}</ref>

[[Per Fink]], a Danish psychiatrist, who believes [[ME/CFS]] is a functional somatic syndrome,<ref name="Schröder, 2017">{{Citation | last1 = Schröder | first1 = Andreas | authorlink1 = | last2 = Ørnbøl | first2 = Eva | authorlink2 = | last3 = Jensen | first3 = Jens S. | authorlink3 = | last4 = Sharpe | first4 = Michael | authorlink4 = Michael Sharpe | last5 = Fink | first5 = Per | authorlink5 = Per Fink | title = Long-term economic evaluation of cognitive-behavioural group treatment versus enhanced usual care for functional somatic syndromes|journal=Journal of Psychosomatic Research|volume=94|issue= | page = 73–81 | date = 2017 | pmid=|doi=10.1016/j.jpsychores.2017.01.005}}</ref> wrote a letter of complaint.<ref>{{Cite web | url = https://www.healthrising.org/forums/threads/per-fink-complains-about-iom-me-cfs-report.2745/ | title = Per Fink complains about IOM ME/CFS report | website = Health Rising's Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Forums|language=en-US|access-date=2020-05-27}}</ref>

==Press conference==
Watch [https://www.youtube.com/watch?v=F7mQWUcxDbo a recording] of the report launch event.

==Responses==

===Researchers and clinicians===

*[http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=10052432&fileId=S0033291715002366 Institute of Medicine report - Review] ([[Peter White]], 8 December 2015)
*[https://pbs.twimg.com/media/B-N28wgCQAAECw6.png:large What's in a name? Systemic exertion intolerance disease] ([[The Lancet]], 21 February 2015)
*[https://m.facebook.com/story.php?story_fbid=1080750148618239&id=523866227639970 Derek Enlander comment on Institute of Medicine report] (19 February 2015, see also [[Derek Enlander]])

===Patient community===

===Centers for Disease Control and Prevention (CDC)===
On July 12, 2018, the [[Centers for Disease Control and Prevention|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"<ref>{{Cite web | url = https://www.cdc.gov/me-cfs/index.html | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2020-04-13 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2020-05-27}}</ref> are stated in the IOM report.<ref name="IOM2015MECFS" /> The report's diagnostic criteria is outlined in the healthcare providers section.<ref>{{Cite web | url = https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html | title = IOM 2015 Diagnostic Criteria {{!}} Diagnosis {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2019-11-19 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2020-05-27}}</ref>

==Panel members==

*[[Ellen Wright Clayton]] (Chair)
*[[Margarita Alegría]]
*[[Lucinda Bateman]]
*[[Lily Chu]]
*[[Charles Cleeland]]
*[[Ronald Davis]]
*[[Betty Diamond]]
*[[Theodore Ganiats]]
*[[Betsy Keller]]
*[[Nancy Klimas]]
*[[A Martin Lerner]]
*[[Cynthia Mulrow]]
*[[Benjamin Natelson]]
*[[Peter Rowe]]
*[[Michael Shelanski]]

==See also==

*[[Myalgic encephalomyelitis]] (ME) was the original name for [[chronic fatigue syndrome]] (CFS); the names are used interchangeably or with the acronym ME/CFS.<ref name="Nicholson, 2016">{{Citation | last1 = Nicholson | first1 = Laura | authorlink1 = | last2 = Brown | first2 = Abigail | authorlink2 = Abigail Brown | last3 = Jason | first3 = Leonard A. | authorlink3 = Leonard Jason | last4 =Ohanian | first4 = Diana | authorlink4 = Diana Ohanian | last5 = O’Connor | first5 = Kelly | authorlink5 = | title = Educational Priorities for Healthcare Providers and Name Suggestions for Chronic Fatigue Syndrome: Including the Patient Voice | journal = Clin Res Open Access | volume = 2 | issue = 1 | page = | date = 2016 | pmid = | doi = 10.16966/2469-6714.112 }}</ref> The name SEID, although giving credence to the fact that patients are intolerant to [[exertion]], does not capture the debilitating [[central nervous system]] symptoms patients experience as the name ME does.
*[[Pathways to prevention report]]
*[[Systemic Exertion Intolerance Disease]]

=== Generally accepted criteria for diagnosing ME and ME/CFS ===
*[[Canadian Consensus Criteria]] (CCC)<ref name="Carruthers, 2003">{{Citation | last1 = Carruthers | first1 = Bruce M. | authorlink1 = Bruce Carruthers | last2 = Jain | first2 = Anil Kumar | authorlink2 = Anil Kumar Jain | last3 = De Meirleir | first3 = Kenny L. | authorlink3 = Kenny De Meirleir | last4 =Peterson | first4 = Daniel L. | authorlink4 = Daniel Peterson | last5 = Klimas | first5 = Nancy G. | authorlink5 = Nancy Klimas | last6 = Lerner | first6 = A. Martin | authorlink6 = Martin Lerner | last7 = Bested | first7 = Alison C. | authorlink7 = Alison Bested | last8 = Flor-Henry | first8 = Pierre | authorlink8 = Pierre Flor-Henry | last9 = Joshi | first9 = Pradip | author-link9 = Pradip Joshi | last10 = Powles | first10 = AC Peter | authorlink10 = A C Peter Powles | last11 = Sherkey | first11 = Jeffrey A. | authorlink11 = Jeffrey Sherkey | last12 = van de Sande | first12 = Marjorie I. | authorlink12 = Marjorie van de Sande | title =  Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols | journal = Journal of Chronic Fatigue Syndrome | volume = 11 | issue = 2 | pages = 7-115 | date = 2003 | pmid = | doi = 10.1300/J092v11n01_02 | url = http://phoenixrising.me/wp-content/uploads/Canadian-definition.pdf }}</ref>  A diagnosis of moderate and severe forms of [[ME/CFS]] are accurately made using this criterion. Adults can be diagnosed at 6 months while pediatric cases are diagnosed at three months.
*[[International Consensus Criteria]] (ICC)<ref>{{Cite journal | last = Carruthers | first = Bruce M. | authorlink = Bruce Carruthers | last2 = van de Sande | first2 = Marjorie I. | authorlink2 = Marjorie van de Sande | last3 = De Meirleir | first3 = Kenny L. | authorlink3 = Kenny De Meirleir | last4 = Klimas | first4 = Nancy G. | author-link4 = Nancy Klimas | last5 = Broderick | first5 = Gordon | authorlink5 = Gordon Broderick | last6 = Mitchell | first6 = Terry | authorlink6 = Terry Mitchell | last7 = Staines | first7 = Donald | authorlink7 = Donald Staines | last8 = Powles | first8 = A.C. Peter | authorlink8 = A C Peter Powles | last9 = Speight | first9 = Nigel | author-link9 = Nigel Speight | last10 = Vallings | first10 = Rosamund | authorlink10 = Rosamund Vallings | last11 = Bateman | first11 = Lucinda | authorlink11 = Lucinda Bateman | last12 = Baumgarten-Austrheim | first12 = Barbara | authorlink12 = Barbara Baumgarten-Austrheim | last13 = Bell | first13 = David | author-link13=David Bell | last14 = Carlo-Stella | first14 = Nicoletta | author-link14 = Nicoletta Carlo-Stella | last15 = Chia | first15 = John | author-link15 = John Chia | last16 = Darragh | first16 = Austin | author-link16 = Austin Darragh | last17 = Jo | first17 = Daehyun | author-link17 = Daehyun Jo | last18 = Lewis | first18 = Donald | author-link18 = Donald Lewis | last19 = Light | first19 = Alan | author-link19 = Alan Light | last20 = Marshall-Gradisnik | first20 = Sonya | author-link20 = Sonya Marshall-Gradisnik | last21 = Mena | first21 = Ismael | author-link21 = Ismael Mena | last22 = Mikovits | first22 = Judy | author-link22 = Judy Mikovits | last23 = Miwa | first23 = Kunihisa | author-link23 = Kunihisa Miwa | last24 = Murovska | first24 = Modra | author-link24 = Modra Murovska | last25 = Pall | first25 = Martin | author-link25 = Martin Pall | last26 = Stevens | first26 = Staci | author-link26 = Staci Stevens | date = 2011-08-22 | title=Myalgic encephalomyelitis: International Consensus Criteria | url = https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2796.2011.02428.x|journal=Journal of Internal Medicine|language=en|volume=270|issue=4 | pages = 327–338|doi=10.1111/j.1365-2796.2011.02428.x|issn=0954-6820|pmc=3427890|pmid=21777306|via=}}</ref>  This criterion will accurately diagnose [[myalgic encephalomyelitis]] (ME). There is no requirement that the individual have symptoms for a specified period of time for diagnosis, as opposed to CCC, [[Fukuda criteria|Fukuda]], and [[Systemic Exertion Intolerance Disease|SEID]], which all require 6 months in adults.
*[[Systemic Exertion Intolerance Disease]] (SEID)<ref>{{Cite web|url= https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf | title=Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness | last = Clayton | first = Ellen Wright | date = 2015 | website = National Academies|archive-url=|archive-date=|url-status=|access-date= | authorlink = Ellen Wright Clayton | last2 = Alegria | first2 = Margarita | authorlink2 = Margarita Alegría | authorlink3 = Lucinda Bateman | authorlink4 = Lily Chu | authorlink5 = Charles Cleeland | authorlink6 = Ronald Davis | authorlink7 = Betty Diamond | authorlink8 = Theodore Ganiats  | author-link9 = Betsy Keller | last3 = Bateman | first3 = Lucinda | last4 = Chu | first4 = Lily | last5 = Cleeland | first5 = Charles | last6 = Davis | first6 = Ronald | last7 = Diamond | first7 = Betty | last8 = Ganiats | first8 = Theodore | last9 = Keller | first9 = Betsy | last10 = Klimas | first10 = Nancy | authorlink10=Nancy Klimas | last11 = Lerner | first11 = A Martin | authorlink11=Martin Lerner | last12 = Mulrow | first12 = Cynthia | authorlink12=Cynthia Mulrow | last13 = Natelson | first13 = Benjamin | authorlink13 = Benjamin Natelson | last14 = Rowe | first14 = Peter | authorlink14=Peter Rowe | last15 = Shelanski | first15 = Michael | authorlink15=Michael Shelanski}}</ref> ME/CFS ([[Systemic Exertion Intolerance Disease|SEID]]) is accurately diagnosed when the [[Systemic Exertion Intolerance Disease#Diagnostic criteria|core symptoms]] are met. The [[Institute of Medicine report]] as a whole is a comprehensive review of the medical literature available at time of publication (2015). Adults can be diagnosed at 6 months while pediatric cases are diagnosed at three months.

==Learn more==
* 2013, [http://phoenixrising.me/archives/20319 Death Contract? ME/CFS Experts and Advocates Unite to Oppose US ‘Case Definition’ Contract]
* 2015, [https://www.washingtonpost.com/news/to-your-health/wp/2015/02/10/chronic-fatigue-syndrome-is-a-real-condition-not-a-psychological-illness-expert-panel-says/ Chronic fatigue syndrome is a physical disorder, not a psychological illness, panel says]

*Feb 17 2015, [http://www.newyorker.com/tech/elements/chronic-fatigue-syndrome-iom-report "A New Name, and Wider Recognition, for Chronic Fatigue Syndrome" by Meghan O’Rourke in ''The New Yorker'']
==References==
{{reflist}}

[[Category:Reports]]
[[Category:Seminal works]]