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History of myalgic encephalomyelitis and chronic fatigue syndrome
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[[Myalgic encephalomyelitis]] has occurred in both [[Epidemic myalgic encephalomyelitis|epidemic]] and sporadic form since at least the 1930s, although is probably much older. The name '''myalgic encephalomyelitis''' in an editorial in the Lancet, in 1956, when describing the [[1955 Royal Free Hospital outbreak]] in London, UK.<ref name="MyalgicEncephalomyelitis-first-named">{{Cite journal | journal = Lancet|volume=1|issue= | pages = 789–790 | date = 1956 | title = A new clinical entity? | url = https://mecfsj.files.wordpress.com/2019/05/lancet_e383a9e383b3e382bbe38383e383881956_me.pdf}}</ref><ref name="Ramsay1965">{{Cite journal | last = Ramsay | first = A. Melvin | authorlink = Melvin Ramsay | date = 1965-10-30 | title = Hysteria and “Royal Free Disease.” | url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1847119/|journal=British Medical Journal|volume=2|issue=5469|pages=1062|doi=|issn=0007-1447|pmc=1847119|pmid=|access-date=|quote=|via=}}</ref> The first recorded outbreak of epidemic myalgic encephalomyelitis was in [[1934 Los Angeles atypical polio outbreak|1934 in Los Angeles]] and was thought to be an outbreak of atypical polio. After the outbreak in [[Akureyri]], Iceland in 1946, the disease came to be called "Akureyri Disease" or [[Icelandic disease]] through much of the 1940s and 1950s. It was named [[myalgic encephalomyelitis]] after London's [[Royal Free Hospital outbreak]] in 1955. Other names included benign myalgic encephalomyelitis and epidemic neuromyasthenia. After the [[1984 Incline Village chronic fatigue syndrome outbreak|Incline Village]] outbreak in Nevada in 1984, the disease came to be called and redefined as [[Chronic Fatigue Syndrome]]. The most recent was putative outbreak was in Arizona in 1996. == 19th century == Several descriptions of illness resembling those of chronic fatigue syndrome have been reported for at least two hundred years.<ref name="Lorusso2009">{{Cite journal | last = Lorusso | first = Lorenzo | authorlink = Lorenzo Lorusso | last2 = Mikhaylova | first2 = Svetlana V. | last3 = Capelli | first3 = Enrica | authorlink3 = Enrica Capelli | last4 = Ferrari | first4 = Daniela | last5 = Ngonga | first5 = Gaelle K. | last6 = Ricevuti | first6 = Giovanni | date = Feb 2009 | title = Immunological aspects of chronic fatigue syndrome | url = https://www.ncbi.nlm.nih.gov/pubmed/18801465|journal=Autoimmunity Reviews|volume=8|issue=4 | pages = 287–291|doi=10.1016/j.autrev.2008.08.003|issn=1873-0183|pmid=18801465|via=}}</ref> In the 19th century, neurologist [[George Beard|George Miller Beard]] popularized the concept of [[neurasthenia]], with symptoms including [[fatigue]], [[anxiety]], [[headache]], impotence, [[neuralgia]] and [[depression]].<ref name="Beard1869">{{cite journal | last = Beard | first = George Miller | authorlink = George Miller Beard | date = 1869 | title = Neurasthenia, or nervous exhaustion|journal=The Boston Medical and Surgical Journal | pages = 217–221 | url = https://www.nejm.org/doi/full/10.1056/NEJM186904290801301|volume=3|issue=18|quote=}}</ref> The concept of neurasthenia remained popular well into the middle of the 20th century, eventually coming to be seen as a behavioral or psychiatric fatigue condition rather than physical disease, with the diagnosis excluding cases of [[Postviral fatigue syndrome|Postviral Fatigue Syndrome]]. Neurasthenia has since largely been abandoned as a medical diagnosis.<ref name="Evengard1999">{{Cite journal | last = Evengård | first = B. | last2 = Schacterle | first2 = R.S. | last3 = Komaroff | first3 = A.L. | author-link3 = Anthony Komaroff | date = Nov 1999 | title = Chronic fatigue syndrome: new insights and old ignorance | url = https://www.ncbi.nlm.nih.gov/pubmed/10583715|journal=Journal of Internal Medicine|volume=246|issue=5 | pages = 455–469|issn=0954-6820|pmid=10583715|via=|quote= | author-link = Birgitta Evengård}}</ref> In the 1990s, the [[ICD-10]] manual of the [[World Health Organization]] categorized neurasthenia under ''F48 Other neurotic disorders'', which specifically excluded [[chronic fatigue syndrome]],<ref name="Who Neurasthenia">{{Cite web | url=https://icd.who.int/browse10/2010/en#/V | title = ICD-10, Chapter V Mental and behavioural disorders (F00-F99) | date = 2007 | access-date= | last = World Health Organization | first = |website=WHO International|archive-url=|archive-date=|url-status= | authorlink = World Health Organization}}</ref> and Postviral Fatigue Syndrome / Myalgic Encephalomyelitis / Chronic Fatigue Syndrome classed under "Diseases of the Nervous System".<ref name="ICD-10">{{Cite web | url=https://icd.who.int/browse10/2016/en#/G93 | title = G93 Other diseases of the nervous system - ICD-10 Version:2016 | last = World Health Organization | first = | authorlink = World Health Organization | date = 2016 | website=World Health Organization|archive-url=|archive-date=|url-status=|access-date=2019-04-13}}</ref> ==Epidemic myalgic encephalomyelitis (1930s-1960s) == {{Main article |page_name = Epidemic myalgic encephalomyelitis}} In 1938, [[Alexander Gilliam]] described an illness that resembled [[poliomyelitis]], interviewing patients and reviewing records of one of several clusters which had occurred in Los Angeles, United States in 1934.<ref name="Gilliam38">{{citation | last = Gilliam | first = AG | date = 1938 | title = Epidemiological study on an epidemic, diagnosed as poliomyelitis, occurring among the personnel of Los Angeles County General Hospital during the summer of 1934| work=United States Treasury Department Public Health Service Public Health Bulletin|location=Washington, DC|volume=240|pages=1–90|url=}}</ref> The [[1934 Los Angeles atypical polio outbreak|Los Angeles County Hospital outbreak]] included all or most of its nurses and doctors.<ref name="ISBN 078902196X">{{cite book | title = Medical Etiology, Assessment, and Treatment of Chronic Fatigue and Malaise| publisher = Haworth Press | date = 2004|isbn=0-7890-2196-X | pages = 6–7|oclc=|location= | last = Patarca-Montero | first = Roberto | authorlink = Roberto Patarca}}</ref> Gilliam called the outbreak "[[atypical poliomyelitis]]" and described the symptoms as: rapid muscle weakness, vasomotor instability, clonic twitches and cramps, [[ataxia]], severe pain (usually aggravated by exercise), neck and back stiffness, menstrual disturbance and dominant sensory involvement. Novices and convent candidates at a Wisconsin convent were diagnosed with "encephalitis" in 1936. Two towns in Switzerland had outbreaks of "[[abortive poliomyelitis]]" in 1937, and 73 Swiss soldiers were given the same diagnosis in 1939. Outbreaks in Iceland were called "[[1948-49 Akureyri outbreak|Akureyri disease]]" or "simulating poliomyelitis" and were later called "[[Icelandic disease|Iceland disease]]." Eight hundred people in [[1949-53 Adelaide outbreak|Adelaide, Australia]] became ill during 1949-1951 with a disease "resembling poliomyelitis." Two smaller clusters in the United States during 1950 were diagnosed as "[[Epidemic neuromyasthenia]]" and "resembling Iceland disease simulating acute anterior poliomyelitis." Additional outbreaks of poliomyelitis-like "mystery diseases" occurred from the 1950s through the 1980s, in [[Denmark]], the [[United States]], South Africa, and [[Australia]], among others.<ref name="ISBN 078902196X" /> Several outbreaks of a polio-resembling illness occurred in Britain in the 1950s.<ref name="Ramsay-RF">{{cite book | title = Postviral Fatigue Syndrome. The saga of Royal Free disease | last = Ramsay| publisher = Gower | date = 1986|isbn=0-906923-96-4|location=London | first = A. Melvin|pages= | author-link = Melvin Ramsay}}</ref> A [[1955 Royal Free Hospital outbreak|1955 outbreak at the Royal Free Hospital Group]] was later called ''Royal Free disease'' or ''benign myalgic encephalomyelitis''.<ref name="pmid13472002">{{cite journal | date = 1957 | last = ((The Medical Staff Of The Royal Free Hospital)) | first = | title = An outbreak of encephalomyelitis in the Royal Free Hospital Group, London, in 1955|journal=British Medical Journal|volume=2|issue=5050 | pages = 895–904|doi=10.1136/bmj.2.5050.895|pmc=1962472|pmid=13472002}}</ref><ref name="MyalgicEncephalomyelitis-first-named" /> After the Royal Free Hospital outbreak, a disorder with similar symptoms was found among the general population and the epidemic form came to be considered the exception.<ref name="Wojcik2011">{{Cite journal | last = Wojcik | first = Wojtek | authorlink = | last2 = Armstrong | first2 = David | authorlink2 = | last3 = Kanaan | first3 = Richard | authorlink3 = | date = June 2011 | title = Chronic fatigue syndrome: labels, meanings and consequences | url = http://www.academia.edu/download/44620045/Is_chronic_fatigue_syndrome_a_neurologic20160411-5977-7911gv.pdf | journal=Journal of Psychosomatic Research|volume=70|issue=6 | pages = 500–504|doi=10.1016/j.jpsychores.2011.02.002|issn=1879-1360|pmid=21624573|quote=|via=}}</ref><ref>{{Cite journal | last = Dawson | first = J | author-link = | date = 1987-02-07 | title = Royal Free disease: perplexity continues. | url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1245346|journal=British Medical Journal (Clinical research ed.)|volume=294|issue=6568 | pages = 327–328|issn=0267-0623|pmc=1245346|pmid=3028544|quote=|via=}}</ref> Pathology findings, from both monkeys intentionally infected with biological fluids from patients<ref>{{cite journal | date = Sep 1955 | title = Further investigations on a disease resembling poliomyelitis seen in Adelaide|journal=Med. J. Aust.|volume=2|issue=13 | pages = 480–2 | last = Pellew | first = RA | last2 = Miles | first2 = JA|quote= | url = https://pubmed.ncbi.nlm.nih.gov/13272481|pmid=13272481|via=}}</ref> and from rare human casualties,<ref>{{Cite journal | last = Wallis | first = AL | date = 1957 | title = An investigation into an unusual illness seen in epidemic and sporadic form in a general practice in Cumberland in 1955 and subsequent years|format=M.D. Thesis | url = https://www.era.lib.ed.ac.uk/bitstream/handle/1842/9382/Wallis1957_FULL.pdf?sequence=1&isAllowed=y|journal=University of Edinburgh|issue=|pages=|quote=|via=|volume=}}</ref> led to the conclusion that the disorder was caused by [[inflammation]] of the brain and the [[spinal cord]], particularly the afferent nerve roots, perhaps with [[neuroimmune disease]] etiology.<ref name="Richardson2002">{{cite journal | last = Richardson | first = J | date = 2002 | title = Myalgic encephalomyelitis: guidelines for doctors | url = http://me-ireland.com/richardson.pdf | journal=Journal of Chronic Fatigue Syndrome|volume=10|issue=1 | pages = 65–80|doi=10.1300/j092v10n01_06|quote= | author-link = John Richardson|via=}}</ref> ==Mass hysteria (1960s-1970s) == In the 1960s and 1970s, chronic fatigue symptoms were often attributed to chronic [[brucellosis]], but typically people were seen as having [[:Category:Mental disorders|psychiatric disorders]], in particular [[depression]].<ref name="ISBN 078902196X" /> Epidemic cases of benign myalgic encephalomyelitis were called [[mass hysteria]] by psychiatrists [[Colin McEvedy|McEvedy]] and [[William Beard|Beard]] in 1970,<ref name="McEvedy1970">{{cite journal | date = 1970 | title = Concept of Benign Myalgic Encephalomyelitis | url = |journal=British Medical Journal|volume=1|issue=5687|pages=11–5|doi=10.1136/bmj.1.5687.11|pmc=1700895|pmid=5411596 | last = McEvedy | first = CP|quote= | author-link = Colin McEvedy | authorlink2 = William Beard | last2 = Beard | first2 = AW}}</ref> provoking criticism in letters to the editor of the [[British Medical Journal]] by outbreak researchers, attending physicians, and physicians who fell ill.<ref name="PMID5370039">{{cite journal | last = Scott | date = Jan 1970 | title = Epidemic malaise | url = |journal=British Medical Journal|volume=1|issue=5689|pages=170–175|doi=10.1136/bmj.1.111.170|pmc=1699088|pmid=5370039 | first = BD|quote=|via=}}</ref><ref name="Compston">{{cite journal | last = Compston | last2 = Dimsdale | last3 = Ramsay | last4 = Richardson | date = Feb 1970 | title = Epidemic malaise|journal=British Medical Journal|volume=1|issue=5692 | pages = 362–363|doi=10.1136/bmj.1.5692.362-a|pmc=1699022|pmid=|url= | first = N.D. |quote= | authorlink3 = Melvin Ramsay | first2 = H.E. | first3 = A.M. | first4 = A. T.}}</ref><ref name="Acheson">{{cite journal | last = Acheson | date = Feb 1970 | title = Epidemic Malaise|journal=British Medical Journal|volume=1|issue=5692 | pages = 363–4|doi=10.1136/bmj.1.5692.363-b|pmc=1698971|pmid=|url= | first = E.D. |quote= | author-link = Donald Acheson|via=}}</ref><ref name="PMID5435167">{{cite journal | last = Gosling | date = Feb 1970 | title = Epidemic malaise | url = |journal=British Medical Journal|volume=1|issue=5694 | pages = 499–500|doi=10.1136/bmj.1.5694.499-b|pmc=1699452|pmid=5435167 | first = PH|quote=|via=}}</ref><ref name="PMID5435168">{{cite journal | last = Burke | date = Feb 1970 | title = Epidemic malaise | url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1699458/?page=1|journal=British Medical Journal|volume=1|issue=5694 | pages = 500|doi=10.1136/bmj.1.5694.500|pmc=1699458|pmid=5435168 | first = GJ|quote=|via=}}</ref><ref name="PMID5435169">{{cite journal | last = Hopkins | date = Feb 1970 | title = Epidemic malaise | url = |journal=British Medical Journal|volume=1|issue=5694 | pages = 500–1|doi=10.1136/bmj.1.5694.500-a|pmc=1699426|pmid=5435169 | first = EJ|quote=|via=}}</ref><ref name="PMID5435170">{{cite journal | last = Galpine | date = Feb 1970 | title = Epidemic malaise | url = |journal=British Medical Journal|volume=1|issue=5694 | pages = 501|doi=10.1136/bmj.1.5694.501|pmc=1699416|pmid=5435170 | first = JF|quote=|via=}}</ref><ref name="PMID5420612">{{cite journal | last = Poskanzer | date = May 1970 | title = Epidemic malaise | url = |journal=British Medical Journal|volume=2|issue=5706 | pages = 420–1|doi=10.1136/bmj.2.5706.420-b|pmc=1700311|pmid=5420612 | first = DC|quote=|via=}}</ref><ref name="PMID4316803">{{cite journal | last = Parish | date = Jul 1970 | title = Epidemic malaise | url = |journal=British Medical Journal|volume=3|issue=5713 | pages = 47–8|doi=10.1136/bmj.3.5713.47-c|pmc=1700986|pmid=4316803 | first = JG|quote= | author-link = Gordon Parish|via=}}</ref> The psychiatrists were faulted for not adequately investigating the patients they described,<ref name="Hooper2007">{{Cite journal | last = Hooper | first = M. | authorlink = Malcolm Hooper | date = May 2007 | title = Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research | url = https://www.ncbi.nlm.nih.gov/pubmed/16935967|journal=Journal of Clinical Pathology|volume=60|issue=5 | pages = 466–471|doi=10.1136/jcp.2006.042408|issn=0021-9746|pmc=1994528|pmid=16935967|quote=|via=}}</ref> and their conclusions have been refuted.<ref name="Evengard1999" /><ref name="pmid 3128374">{{cite journal | date = Mar 1988 | title = Postviral fatigue syndrome: time for a new approach | url = |journal=British Medical Journal (Clin Res Ed)|volume=296|issue=6623 | pages = 696–9|doi=10.1136/bmj.296.6623.696|pmc=2545306|pmid=3128374 | last = David | first = AS|quote= | author-link = Anthony David | authorlink2 = Simon Wessely | first2 = S | last2 = Wessely | last3 = Pelosi | first3 = AJ}}</ref><ref name="pmid2294610">{{cite journal|vauthors=Stricklin A, Sewell M, Austad C | date = Jan 1990 | title = Objective measurement of personality variables in epidemic neuromyasthenia patients | url = https://pubmed.ncbi.nlm.nih.gov/2294610|journal=S. Afr. Med. J.|volume=77|issue=1 | pages = 31–4|pmid=2294610}}</ref> In 1978 a symposium held at the UK's [[Royal Society of Medicine]] concluded that ''epidemic myalgic encephalomyelitis'' was a distinct disease entity with a clear organic basis.<ref name="pmid647324">{{cite journal | last = | first = | date = Jun 3, 1978 | title = Epidemic myalgic encephalomyelitis|journal=British Medical Journal|volume=1|issue=6125|pages=1436–7|doi=10.1136/bmj.1.2791.1436-a|pmc=1604957|pmid=647324 | url = |quote=|via=}}</ref> ==Neurological classification == Myalgic encephalomyelitis was first classified as a [[nervous system|neurological]] disease when the [[World Health Organization]] published the of [[World_Health_Organization#icd8|ICD-8]] classification manual in 1969.<ref name="ICD-8">{{Cite book | url =https://apps.who.int/iris/bitstream/handle/10665/70934/ICD_10_1969_eng_v2a.pdf | title=International Classification of Diseases|edition=Eighth Revision | last = World Health Organization | first = | authorlink = World Health Organization| publisher = WHO | date = 1969|volume=2|location=Geneva | page = 173|chapter=|quote=Encephalomyelitis (chronic),<br>(myalgic, benign) 323}}</ref> Myalgic encephalomyelitis was given ICD-8 code 323, and grouped with the other forms of encephalomyelitis under the '''Diseases of the Nervous System section'''.<ref name="ICD-8" /> In the later Ninth revision (1977), the ICD-9, the entry for myalglc encephalomyelitis is uses code 323.9 and remains a disease of the [[nervous system]], along with the other forms of encephalomyelitis.<ref name="ICD-9">{{Cite book | url =https://apps.who.int/iris/bitstream/handle/10665/40492/9241540052_eng_v2_p1.pdf?sequence=3&isAllowed=y| title = Manual of the international statistical classification of diseases, injuries, and causes of death : based on the recommendations of the ninth revision conference, 1975, and adopted by the Twenty-ninth World Health Assembly, 1975 revision: alphabetic index | first = | last = World Health Organization & International Conference for the Ninth Revision of the International Classification of Diseases| publisher = World Health Organization | date = 1978|isbn=9241540044|editor-link=|edition=Ninth|volume=2|location=Geneva | page = 182|chapter=|quote=}}</ref> There is no mention of a chronic fatigue syndrome (the term was had not been proposed at the time) and there was no mention of an illness named "[[chronic fatigue]]". ==Chronic fatigue syndrome (1980s and 1990s) == The illness gained national attention in the United States when the popular magazine ''Hippocrates'' ran a cover story of an [[1984 Incline Village chronic fatigue syndrome outbreak|epidemic at Lake Tahoe, Nevada]], in the mid-1980s.<ref name="Osler'sWeb">{{cite book | title = Osler's Web: inside the labyrinth of the chronic fatigue syndrome epidemic | last = Johnson | first =Hillary| publisher = Penguin Books | date = 1996 | isbn=0-595-34874-2|location=New York | pages = 24|editor-link=|chapter=|quote=|editor-last2 = |editor-link2 = | authorlink = Hillary Johnson}}</ref> The designation Chronic Epstein-Barr Virus was in use in the U.S.,<ref name="Jones1985">{{Cite journal | last = Jones | first = J.F. | authorlink = | last2 = Ray | first2 = C.G. | authorlink2 = | last3 = Minnich | first3 = L.L. | author-link3 = | last4 = Hicks | first4 = M.J. | authorlink4 = | last5 = Kibler | first5 = R. | authorlink5 = | last6 = Lucas | first6 =D.O. | date = Jan 1985 | title = Evidence for active Epstein-Barr virus infection in patients with persistent, unexplained illnesses: elevated anti-early antigen antibodies | url = https://www.ncbi.nlm.nih.gov/pubmed/2578266|journal=Annals of Internal Medicine|volume=102|issue=1|pages=1–7|issn=0003-4819|pmid=2578266|quote=|via=}}</ref><ref name="Strauss1985">{{Cite journal | last = Straus | first = Stephen E. | authorlink = Stephen Straus | date = 1985-01-01 | title = Persisting Illness and Fatigue in Adults with Evidence of Epstein-Barr Virus Infection | url = http://annals.org/aim/article-abstract/699347/persisting-illness-fatigue-adults-evidence-epstein-barr-virus-infection?doi=10.7326%2f0003-4819-102-1-7|journal=Annals of Internal Medicine|language=en|volume=102|issue=1 | pages = 7|doi=10.7326/0003-4819-102-1-7|issn=0003-4819|quote=|via=}}</ref> but the magazine used the term "[[Raggedy Ann Syndrome]]" to note the fatigue and loss of muscle power patients felt.<ref name="Hippocrates">{{Cite journal | last = Day | first = W | date = July-August 1987 | title = Raggedy Ann syndrome|journal=Hippocrates|at=cover | url = |quote=|via=}}</ref> Researchers investigating the Lake Tahoe cluster did not find evidence that EBV was involved, and they proposed the name ''[[chronic fatigue syndrome]]'', describing fatigue as the main symptom of the illness.<ref name="Holmes1988" /><ref name="isbn0801879426">{{cite book | title = Emerging Illnesses and Society|editor-last = Packard|editor-first = RM|editor-last2 = Brown|editor-first2 = PJ|editor-last3 = Frumkin |editor-first3 = H| publisher = Johns Hopkins Press | date = 2004|isbn=0-8018-7942-6|pages=156 | last = Barett | first = Deborah|chapter=Illness Movements and the Medical Classification of Pain and Fatigue|location=London and New York|quote=|chapter-url=https://books.google.com/books?id=EGNFPZrKIKMC&pg=PA156#v=onepage&f=false}}</ref> They published the first working case definition for CFS in 1988.<ref name="Holmes1988">{{Cite journal | last = Holmes | first = Gary P. | authorlink = Gary Holmes | last2 = Kaplan | first2 = Jonathan E. | authorlink2 = | last3 = Gantz | first3 = Nelson M. | authorlink3 = Nelson Gantz | last4 = Komaroff | first4 = Anthony L. | authorlink4 = Anthony Komaroff | last5 = Schonberger | first5 = Lawrence B. | authorlink5 = | last6 = Straus | first6 = Stephen E. | authorlink6 = Stephen Straus | last7 = Jones | first7 = James F. | last8 = Dubois | first8 = Richard E. | last9 = Cunningham-Rundles | first9 = Charlotte | last10 = Pahwa | first10 = Savita | last11 = Tosato | first11 = Giovanna | last12 = Zegans | first12 = Leonard S. | last13 = Purtilo | first13 = David T. | last14 = Brown | first14 = Nathaniel | last15 = Schooley | first15 = Robert | last16 = Brus | first16 = Irena | date = 1988-03-01 | title = Chronic Fatigue Syndrome: A Working Case Definition | url = http://annals.org/aim/article-abstract/701163/chronic-fatigue-syndrome-working-case-definition?doi=10.7326%2f0003-4819-108-3-387|journal=Annals of Internal Medicine|language=en|volume=108|issue=3 | pages = 387|doi=10.7326/0003-4819-108-3-387|issn=0003-4819|quote=|via=}}</ref> Research increased considerably, and more so after the criteria were relaxed in 1994.<ref name="Fukuda1994">{{Cite journal | last = Fukuda | first = Keiji | authorlink = Keiji Fukuda | last2 = Straus | first2 = Stephen E. | authorlink2 = Stephen Straus | last3 = Hickie | first3 = Ian | authorlink3 = | last4 = Sharpe | first4 = Michael C. | authorlink4 = Michael Sharpe | last5 = Dobbins | first5 = James G. | authorlink5 = | last6 = Komaroff | first6 = Anthony | authorlink6 = Anthony Komaroff | last7 = International Chronic Fatigue Syndrome Study Group | date = 1994-12-15 | title = The Chronic Fatigue Syndrome: A Comprehensive Approach to Its Definition and Study | url = http://annals.org/aim/article-abstract/708271/chronic-fatigue-syndrome-comprehensive-approach-its-definition-study?doi=10.7326%2f0003-4819-121-12-199412150-00009|journal=Annals of Internal Medicine|language=en|volume=121|issue=12 | pages = 953|doi=10.7326/0003-4819-121-12-199412150-00009|issn=0003-4819|quote=|via=}}</ref> In 1990, researchers presented evidence they found [[DNA]] sequences very similar to the human [[human T-lymphotropic virus|HTLV-II retrovirus]] in some CFS patients, at a conference in Kyoto, [[Japan]].<ref name="DOI 10.1126">{{Cite journal | last = Palca | first = J | date = September 14, 1990 | title = Does a retrovirus explain fatigue syndrome puzzle? | url = http://science.sciencemag.org/content/249/4974/1240.1|journal=Science|volume=249|issue=4974|pages=1240–12|bibcode=|doi=10.1126/science.2399461|pmid=2399461|quote=|via=}}</ref><ref name="NYT">{{cite news | url = https://query.nytimes.com/gst/fullpage.html?sec=health&res=9C0CE3DD1430F936A3575AC0A966958260 | title = Virus found that may be linked to a debilitating fatigue ailment | last = Altman | first = Lawrence K. | date = Sep 5, 1990|work=The New York Times|access-date=Feb 24, 2009}}</ref> Their study was later published in the Proceedings of the National Academy of Sciences.<ref name="pmid 1672770">{{cite journal | last = DeFreitas | last2 = Hilliard | last3 = Cheney | last4 = Bell | first4 = DS | last5 = Kiggundu | first5 = E | last6 = Sankey | first6 = D | last7 = Wroblewska | first7 = Z | last8 = Palladino | first8 = M | last9 = Woodward | first9 = JP | date = April 1991 | title = Retroviral sequences related to human T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome | url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC51352/|journal=Proc. Natl. Acad. Sci. U.S.A.|volume=88|issue=7 | pages = 2922–6|doi=10.1073/pnas.88.7.2922|pmc=51352|pmid=1672770 | first = E|quote= | authorlink3 = Paul Cheney | authorlink4 = David Bell | first2 = B | first3 = PR}}</ref> A reporter on Prime Time Live stated the announcement made headlines all over the world.<ref>{{Cite web | url=https://www.youtube.com/watch?v=AW0x9_Q8qbo | title = CFS and the CDC's Failure to Respond: Primetime Live (1996) | last = | first = | authorlink = | date = 1996 | website=YouTube|archive-url=|archive-date=|url-status=|access-date=2018-12-19}}</ref> The CDC first ignored their findings then later conducted a study and published a paper that refuted the hypothesis.<ref name="Retroviral">{{cite journal | date = March 1993 | title = Inability of retroviral tests to identify persons with chronic fatigue syndrome, 1992 | url = https://www.cdc.gov/mmwr/preview/mmwrhtml/00019881.htm|journal=Morbidity and Mortality Weekly Report| publisher = U.S. Centers for Disease Control and Prevention|volume=42|issue=10|pages=183, 189–90|pmid=8446093|access-date=February 23, 2009 | last = | first = |quote=|via=}}</ref> In the [[United Kingdom]], the Chief Medical Officer Kenneth Calman requested a report from the medical Royal Colleges in 1996. This led to the publication of a joint report in which the term "chronic fatigue syndrome" was found to be most representative.<ref>{{cite book | title = Chronic fatigue syndrome: Report of a joint working group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners| publisher = Royal College of Physicians of London | date = 1996 | isbn=1-86016-046-8|location=London, UK|pages=|chapter=|quote= | last = ((Royal Colleges of Physicians, Psychiatrists and General Practitioners)) | first = }}</ref> This was followed in 2002 by a further report by the new CMO, Liam Donaldson.<ref name="CMOrept2002">{{cite web | url = https://webarchive.nationalarchives.gov.uk/+/http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4064840 | title = A report of the CFS/ME working group: report to the chief medical officer of an independent working group. | last = ((CFS/ME Working Group)) | date = 2002| publisher = Department of Health|location=London}}</ref> The U.S. [[Centers for Disease Control & Prevention]] (CDC) recognized CFS as a serious illness, and launched a campaign in June 2006 to raise public and medical awareness about it.<ref name="CDCBasic">{{cite web | url = https://www.cdc.gov/cfs/cfsbasicfacts.htm | title = Chronic fatigue syndrome basic facts | date = May 9, 2006| publisher = Centers for Disease Control and Prevention|access-date=Feb 7, 2008 | last = | first = |website=[[Centers for Disease Control and Prevention]]|archive-url=|archive-date=|url-status=}}</ref><ref name="CDC-awareness">{{cite web | url = https://www.cdc.gov/media/pressrel/a061101.htm | title = Address at CFS awareness campaign launch | last = | date = Jun 7, 2008 | website = [[Centers for Disease Control and Prevention]] | first = |archive-url=|access-date=2022-03-19|url-status=}}</ref> == XMRV study (2009)== A 2009 study published in the journal ''Science'' reported an association between a retrovirus [[xenotropic murine leukemia virus-related virus]] (XMRV) and CFS. The editors of ''Science'' subsequently attached an "Editorial Expression of Concern" to the report to the effect that the validity of the study "''is now seriously in question,"''<ref name="Concern2011">{{cite journal | last = Alberts | first = Bruce | date = 2011 | title=Editorial Expression of Concern|journal=Science|volume=333|issue=6038 | pages = 35|bibcode=|doi=10.1126/science.1208542 | url = http://science.sciencemag.org/content/333/6038/35.1|pmid=21628391|quote=|via=}}</ref> and in September 2011, the authors published a "Partial Retraction" of their 2009 findings;<ref>{{Cite journal | last = Mikovits | first = Judy A. | authorlink = Judy Mikovits | last2 = Dean | first2 = Michael | authorlink2 = | last3 = Gold | first3 = Bert | authorlink3 = | last4 = Petrow-Sadowski | first4 = Cari | authorlink4 = | last5 = Bagni | first5 = Rachel K. | authorlink5 = | last6 = Ruscetti | first6 = Sandra K. | last7 = Peterson | first7 = Daniel L. | authorlink7 = Daniel Peterson | last8 = Hagen | first8 = Kathryn S. | last9 = Pfost | first9 = Max A. | date = 2011-10-14 | title = Partial Retraction | url = http://science.sciencemag.org/content/334/6053/176.1|journal=Science|language=en|volume=334|issue=6053|pages=176–176|doi=10.1126/science.1212182|issn=1095-9203|pmid=21998366|quote=|via=}}</ref> this was followed by a full retraction by the magazine's Editor in Chief, after the authors failed to agree on a full retraction statement.<ref name="Retraction2011">{{cite journal | last = Alberts | date = 2011 | title = Retraction |journal=Science|volume=334|issue=6063|pages=1636|doi=10.1126/science.334.6063.1636-a|pmid=22194552 | url = http://science.sciencemag.org/content/334/6063/1636.1 | first = Bruce|quote=|via=}}</ref> Also in September 2011, the Blood XMRV Scientific Research Working Group published a report, which concluded ''"that currently available XMRV/P-MLV assays, including the assays employed by the three participating laboratories that previously reported positive results on samples from CFS patients and controls, cannot reproducibly detect direct virus markers (RNA, DNA, or culture) or specific antibodies in blood samples from subjects previously characterized as XMRV/P-MLV positive (all but one with a diagnosis of CFS) or healthy blood donors."''<ref>{{Cite journal | last = Simmons | first = Graham | last2 = Glynn | first2 = Simone A. | last3 = Komaroff | first3 = Anthony L. | authorlink3 = Anthony Komaroff | last4 = Mikovits | first4 = Judy A. | authorlink4 = Judy Mikovits | last5 = Tobler | first5 = Leslie H. | last6 = Hackett | first6 = John | last7 = Tang | first7 = Ning | last8 = Switzer | first8 = William M. | last9 = Heneine | first9 = Walid | date = 2011-11-11 | title = Failure to Confirm XMRV/MLVs in the Blood of Patients with Chronic Fatigue Syndrome: A Multi-Laboratory Study | url = http://science.sciencemag.org/content/334/6057/814|journal=Science|language=en|volume=334|issue=6057 | pages = 814–817|doi=10.1126/science.1213841|issn=0036-8075|pmc=3299483|pmid=21940862|via=}}</ref> In December 2011, the ''Proceedings of the National Academy of Sciences'' published a similar retraction for an August 2010 paper.<ref>{{Cite journal | last = National Academy of Sciences | first = | authorlink = | date = 2012-01-03 | title = Retraction for Lo et al., Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors | url = https://www.pnas.org/content/109/1/346|journal=Proceedings of the National Academy of Sciences|language=en|volume=109|issue=1 | pages = 346–346|doi=10.1073/pnas.1119641109|issn=1091-6490|pmc=3252929|pmid=22203980|quote=|via=}}</ref> Some members of the patient community, who had viewed the XMRV findings as a source of hope for a possible cure, initially reacted negatively when the papers were called into question. One UK researcher reported verbal abuse after publishing an early paper indicating that the XMRV studies were flawed.<ref>{{cite web | url = https://www.theguardian.com/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis | title = Chronic fatigue syndrome researchers face death threats from militants | date = 2011-08-21|access-date=2014-02-02|newspaper=The Guardian}}</ref> == Institute of Medicine report (2015)== {{Main article | page_name =Institute of Medicine report}} February 15, 2015, The [[National Academy of Medicine]] (known as the [[Institute of Medicine]] or IOM until June 2015) published a report on ME/CFS, ''Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness''<ref name="IOM2015">{{Cite book | url =http://www.ncbi.nlm.nih.gov/books/NBK274235/ | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness | last = ((Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)) | last2 = ((Board on the Health of Select Populations)) | last3 = ((Institute of Medicine)) | date = 2015 | publisher = National Academies Press (US)|isbn=9780309316897|series=The National Academies Collection: Reports funded by National Institutes of Health|location=Washington (DC)|pmid=25695122}}</ref> proposing a new name – [[systemic exertion intolerance disease]] – and a new diagnostic criteria. It has since influenced government policy and healthcare for the disease in the United States and around the world.<ref name="NHMRC">{{Cite web | url=https://www.nhmrc.gov.au/health-advice/all-topics/myalgic-encephalomyelitis-and-chronic-fatigue-syndrome | title = Myalgic Encephalomyelitis and Chronic Fatigue Syndrome | last = National Health and Medical Research Council Act | first = | authorlink = | date = | website = nhmrc.gov.au|language=en|archive-url=|archive-date=|url-status=|access-date=2019-07-23}}</ref><ref>{{Cite journal | last = Maxmen | first = Amy | authorlink = | date = 2018-01-03 | title = A reboot for chronic fatigue syndrome research | url = http://www.nature.com/articles/d41586-017-08965-0|journal=Nature|language=en|volume=553|issue=|pages=14|doi=10.1038/d41586-017-08965-0|quote=|via=}}</ref><ref name="Dutch2018">{{Cite journal | last = Twisk | first = Frank | authorlink = Frank Twisk | date = Jun 2018 | title = Dutch Health Council Advisory Report on Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: Taking the Wrong Turn | url = https://www.mdpi.com/2075-4418/8/2/34|journal=Diagnostics|language=en|volume=8|issue=2 | pages = 34|doi=10.3390/diagnostics8020034|quote=|via=}}</ref> The proposed name proved to be highly unpopular and was not been widely adopted by government agencies or researchers. The CDC adopted the term [[ME/CFS]] in place of Chronic Fatigue Syndrome and adopted the IOM's proposed criteria, with [[post-exertional malaise]] as a required symptom.<ref name="CDC-symptoms">{{Cite web | url = https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html | title = Symptoms {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|website=[[Centers for Disease Control and Prevention]] | date = Jan 27, 2021|access-date = 2021-02-25}}</ref> Criticisms of the IOM report include that the diagnostic criteria captured an overlapping but different subset of patients than stricter criteria like the [[International Consensus Criteria]] or the [[Canadian Consensus Criteria]]. Despite some positive impacts, the IOM report recommendations have remained controversial among many patients and advocacy groups.{{citation needed | date = 2022}} ==Post-exertional malaise as the hallmark symptom and treatments withdrawn== A shift in diagnostic criteria and symptom focus began around 2015-2016, with greatly reduced emphasis on [[fatigue]] and with [[post-exertional malaise]] (PEM) required as a compulsory symptom and frequently referred to as the "hallmark symptom" of ME/CFS. The disease is increasingly referred to as ME/CFS or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome rather than [[Chronic fatigue syndrome]], including by the CDC from 2017.<ref name="CDC-symptoms" /> This change in emphasis has largely resulted from the release of the full [[PACE trial]] outcome data in 2016, and the subsequent re-analysis of the [[Cochrane]] review of [[graded exercise therapy|exercise therapy]] for ME/CFS, which showed that treatment outcome results and impairment differed when post-exertional malaise was a required symptom.<ref name="PTP2015">Green CR, Cowan P, Elk R, O’Neil KM, Rasmussen AL (2015). National institutes of health pathways to prevention workshop:advancing the research on myalgic encephalomyelitis/chronicfatigue syndrome. Ann Intern Med 162: 860–865.</ref><ref name="Wilshire2017">{{Cite journal | last = Wilshire | first = Carolyn | last2 = Kindlon | first2 = Tom | last3 = McGrath | first3 = Simon | date = 2017-01-02 | title = PACE trial claims of recovery are not justified by the data: A Rejoinder to Sharpe, Chalder, Johnson, Goldsmith and White (2017) | url = https://www.researchgate.net/publication/315482747_PACE_trial_claims_of_recovery_are_not_justified_by_the_data_A_Rejoinder_to_Sharpe_Chalder_Johnson_Goldsmith_and_White_2017|journal=Fatigue: Biomedicine, Health and Behavior|volume=5|issue=1|pages =62-67|doi=10.1080/21641846.2017.1299358}}</ref><ref name="Smith2016">{{cite journal | vauthors = Smith ME, Nelson HD, Haney E, Pappas M, Daeges M, Wasson N, McDonagh M | title = Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome No. 219| journal = Evidence Report/Technology Assessment | pages = 1–433 | date = December 2014 | pmid = 30313001 | doi = 10.23970/AHRQEPCERTA219 | url = https://www.ncbi.nlm.nih.gov/books/NBK379582/ | publisher = Agency for Healthcare Research and Quality (US) | quote = The results are consistent across trials with improvement in function, fatigue, and global improvement and provided moderate strength of evidence for improved function (4 trials, n=607) and global improvement (3 trials, n=539), low strength of evidence for reduced fatigue (4 trials, n=607) and decreased work impairment (1 trial, n=480), and insufficient evidence for improved quality of life (no trials) | doi-access = free }}</ref> [[Graded exercise therapy]] and [[cognitive behavioral therapy]] were found to be either harmful or ineffective for the vast majority of patients with post-exertional malaise, and the recommendations for the and withdrawn by the CDC in 2017, and mostly abandoned by the UK's [[National Health Service]] from late 2021.<ref name="Wilshire2017" /><ref name="niceng206">{{Cite web | url=https://www.nice.org.uk/guidance/ng206 | title = Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome:diagnosis and management. NICE guideline. | last = NICE Guideline Development Group | first = | authorlink = | publisher = [[National Institute for Health and Care Excellence]] | date = 2021-10-29}}</ref> The [[biopsychosocial model]] was largely abandoned, with ME/CFS regarded as a serious physical disease, and a greater focus on the biomedical model for diagnosis and treatment, and future research.<ref name="Dutch2018" /><ref name="IOM2015" /> == See also == * [[Epidemic myalgic encephalomyelitis]] * [[List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks]] *[[International Classification of Diseases]] (ICD) *[[Eightfold increase in ME/CFS incidence in the 1980s]] ==Learn more == == References == {{Reflist}} [[Category:History]]
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