Institute of Medicine report: Difference between revisions
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[[File:Iom report front.gif|right|frame|Front cover of the 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 | | 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 | authorlink = 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> | 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== | ==Key findings== | ||
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==Recommendations== | ==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 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 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 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> | 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== | ==Cost== | ||
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==Criticisms== | ==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> | [[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 = | [[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== | ==Press conference== | ||
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===Centers for Disease Control and Prevention (CDC)=== | ===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> | 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== | ==Panel members== | ||
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==See also== | ==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 | *[[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]] | *[[Pathways to prevention report]] | ||
*[[Systemic Exertion Intolerance Disease]] | *[[Systemic Exertion Intolerance Disease]] | ||
=== Generally accepted criteria for diagnosing ME and ME/CFS === | === Generally accepted criteria for diagnosing ME and ME/CFS === | ||
*[[Canadian Consensus Criteria]] (CCC)<ref name="Carruthers, 2003">{{Citation | last1 = Carruthers | *[[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. | | *[[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 | *[[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== | ==Learn more== | ||
Latest revision as of 14:24, April 2, 2023
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 and 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]
- Key facts (two pages)
- Report brief (four pages)
- Download full report (282 pages)
- Diagnostic Algorithm Chart
- Proposed Diagnostic Criteria Chart
- Read the full 282 page report online
- Front matter
- Summary
- 1. Introduction
- 2. Background
- 3. Current Case Definitions and Diagnostic Criteria, Terminology, and Symptom Constructs and Clusters
- 4. Review of the Evidence on Major ME/CFS Symptoms and Manifestations
- 5. Review of the Evidence on Other ME/CFS Symptoms and Manifestations
- 6. Pediatric ME/CFS
- 7. Recommendations
- 8. Dissemination Strategy
- Public Session Agendas
- GRADE Grid Template
- Disability in ME/CFS
- Questionnaires and Tools That May Be Useful for Assessing ME/CFS Symptoms
- Biographical Sketches of Committee Members, Consultants, and Staff
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]
- Institute of Medicine report - Review (Peter White, 8 December 2015)
- What's in a name? Systemic exertion intolerance disease (The Lancet, 21 February 2015)
- Derek Enlander comment on Institute of Medicine report (19 February 2015, see also Derek Enlander)
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]
- 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[edit | edit source]
- Myalgic encephalomyelitis (ME) was the original name for chronic fatigue syndrome (CFS); the names are used interchangeably or with the acronym ME/CFS.[13] 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[edit | edit source]
- Canadian Consensus Criteria (CCC)[14] 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)[15] 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, and SEID, which all require 6 months in adults.
- Systemic Exertion Intolerance Disease (SEID)[16] ME/CFS (SEID) is accurately diagnosed when the 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[edit | edit source]
- 2013, Death Contract? ME/CFS Experts and Advocates Unite to Oppose US ‘Case Definition’ Contract
- 2015, Chronic fatigue syndrome is a physical disorder, not a psychological illness, panel says
- Feb 17 2015, "A New Name, and Wider Recognition, for Chronic Fatigue Syndrome" by Meghan O’Rourke in The New Yorker
References[edit | edit source]
- ↑ 1.0 1.1 Institute of Medicine; Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (February 10, 2015), Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, Washington, DC: The National Academies Press, doi:10.17226/19012
- ↑ "The CFIDS Association Statement on the H.H.S. IOM Contract". Solve ME/CFS Initiative. October 10, 2013. Retrieved May 27, 2020.
- ↑ 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.
- ↑ 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.
- ↑ 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.
- ↑ 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.
- ↑ 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
- ↑ White, P.D. (April 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.
- ↑ 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
- ↑ "Per Fink complains about IOM ME/CFS report". Health Rising's Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Forums. Retrieved May 27, 2020.
- ↑ "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. April 13, 2020. Retrieved May 27, 2020.
- ↑ "IOM 2015 Diagnostic Criteria | Diagnosis | Healthcare Providers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. November 19, 2019. Retrieved May 27, 2020.
- ↑ Nicholson, Laura; Brown, Abigail; Jason, Leonard A.; Ohanian, Diana; O’Connor, Kelly (2016), "Educational Priorities for Healthcare Providers and Name Suggestions for Chronic Fatigue Syndrome: Including the Patient Voice", Clin Res Open Access, 2 (1), doi:10.16966/2469-6714.112
- ↑ 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, AC 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
- ↑ 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 (August 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 3427890. PMID 21777306.
- ↑ 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). National Academies.
