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Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome
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{{Cleanup|reason=Chu 2019 and new CDC info needed | date = May 2020}} '''Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome''': Statistics on the prevalence of [[myalgic encephalomyelitis]] and [[chronic fatigue syndrome]] vary. The [[Centers for Disease Control and Prevention|CDC]] estimates that one million people in the [[United States|US]] have ME/CFS and as many as 17-24 million people worldwide have ME/CFS.<ref name="ammes-people">{{Cite web | url=https://ammes.org/how-many-people-have-mecfs/ | title = How Many People Have ME/CFS? β American ME and CFS Society|language=en-US|access-date=2019-01-31}}</ref> A recent UK biobank study places that estimate at 30 million.<ref>{{Cite web | url=https://mecfsresearchreview.me/2018/06/11/analysis-of-data-from-500000-individuals-in-uk-biobank-demonstrates-an-inherited-component-to-me-cfs/ | title = Analysis of data from 500,000 individuals in UK Biobank demonstrates an inherited component to ME/CFS | last = McGrath | first = Simon | date = 2018-06-11 | website = ME/CFS Research Review|language=en|access-date=2019-02-23}}</ref> In 2015, the [[Institute of Medicine report|Institute of Medicine Report]] estimated there were between 836,000 and 2.5 million [[ME/CFS]] patients in the [[United States]].<ref name="SEID-IOM2015">{{Cite book | last = Institute of Medicine | authorlink = Institute of Medicine | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness|location=Washington, DC| publisher = The National Academies Press | date = 2015 | url=https://www.ncbi.nlm.nih.gov/books/NBK284902/|isbn=0309316898|pmid = 25695122 |doi = 10.17226/19012 }}</ref><ref name="Key">{{Cite web | url=https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf | title=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts | last = | first = | authorlink = | date = 2015 | website = The National Academies of Medicine|archive-url=https://web.archive.org/web/20190327085836/https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf | archive-date=2020-03-27|access-date=}}</ref> 90% of patients are not diagnosed.<ref name="What-is">{{Cite web | url=https://www.cdc.gov/me-cfs/about/index.html | title = What is ME/CFS? {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2019-01-18 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-01-31}}</ref><ref name="Key" /> Twenty-five percent of ME/CFS patients have a very [[Severe and very severe ME|severe form]] of it.<ref>{{Cite web | url=https://raisingawarenessforcfs.wordpress.com/2011/01/31/raising-awareness-for-cfsmecfids/ | title = Raising Awareness | last = Fatima | date = 2011-01-31 | website = Raising Awareness for ME/CFS|language=en|access-date=2020-02-04}}</ref><ref>{{Cite web | url=http://mecfsdocumentary.com/sample-page/ | title = About ME/CFS {{!}} Forgotten Plague|language=en-US|access-date=2020-02-04}}</ref> This 25% of patients are [[Severe and very severe ME|severely ill]] and are either bed-bound, wheelchair bound, or are housebound or nearly so.<ref name="SEID-IOM2015" />{{Rp|32}} ME/CFS is [[Female predominant diseases|more prevalent in women]] than men, can affect [[Pediatric myalgic encephalomyelitis/chronic fatigue syndrome|children]] or adults but is most common in adults between the ages of 30 to 50 years old,<ref name="ICP2011primer" /> or ages 40-60 in the [[United States]].<ref>{{Cite web | url=https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/epidemiology.html | title = Epidemiology {{!}} Presentation and Clinical Course {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2018-11-08 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-01-23}}</ref> In 72% of causes reported by ME/CFS patients, the [[Onset of ME/CFS|onset]] follows an acute [[infection]],<ref name="CDC2016" /> for example a [[virus]] or [[bacterial infection]].<ref name="ICP2011primer">{{citation | last = Carruthers | first1 = BM | authorlink = Bruce Carruthers | last2 = van de Sande | first2 = MI | authorlink2 = Marjorie van de Sande | last3 = De Meirleir | first3 = KL | authorlink3 = Kenny de Meirleir | last4 = Klimas | first4 = NG | authorlink4 = Nancy Klimas | last5 = Broderick | first5 = G | authorlink5 = Gordon Broderick | last6 = Mitchell | first6 = T | author-link6 = Terry Mitchell | last7 = Staines | first7 = D | author-link8 = A C Peter Powles | last8 = Powles | first8 = ACP | last9 = Speight | first9 = N | author-link9 = Nigel Speight | last10 = Vallings | first10 = R | author-link10 = Rosamund Vallings | last11 = Bateman | first11 = L | author-link11 = Lucinda Bateman | last12 = Bell | first12 = DS | author-link12 = David Bell | last13 = Carlo-Stella | first13 = N | author-link13 = Nicoletta Carlo-Stella | last14 = Chia | first14 = J | author-link14 = John Chia | last15 = Darragh | first15 = A | author-link15 = Austin Darragh | last16 = Gerken | first16 = A | author-link16 = Anne Gerken | last17 = Jo | first17 = D | author-link17 = Daehyun Jo | last18 = Lewis | first18 = DP | author-link18 = Donald Lewis | last19 = Light | first19 = AR | author-link19 = Alan Light | last20 = Light | first20 = KC | authorlink20 = Kathleen Light | last21 = Marshall-Gradisnik | first21 = S | authorlink21 = Sonya Marshall-Gradisnik | last22 = McLaren-Howard | first22 = J | authorlink22 = John McLaren-Howard | last23 = Mena | first23 = I | authorlink23 = Ismael Mena | last24 = Miwa | first24 = K | authorlink24 = Kunihisa Miwa | last25 = Murovska | first25 = M | authorlink25= Modra Murovska | last26 = Stevens | first26 = SR | authorlink26 = Staci Stevens | title = Myalgic encephalomyelitis: Adult & Paediatric: International Consensus Primer for Medical Practitioners | date = 2012 | isbn = 978-0-9739335-3-6 | url = http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf }}</ref> ==Incidence and Prevalence== The prevalence rate is projected at 0.2%<ref name="Nacul2011" /><ref name="Reyes2003" />-0.4%<ref name="Jason, 1999" /><ref>{{Cite news |url =https://mecfsresearchreview.me/2018/06/11/analysis-of-data-from-500000-individuals-in-uk-biobank-demonstrates-an-inherited-component-to-me-cfs/ | title = Analysis of data from 500,000 individuals in UK Biobank demonstrates an inherited component to ME/CFS | date = 2018-06-11|work=ME/CFS Research Review|access-date=2018-08-11|language=en-US}}</ref> although estimates vary widely due to different definitions and sampling methods used.<ref>{{Cite journal | last = Johnston | first = Samantha | authorlink = Samantha Johnston | last2 = Brenu | first2 = Ekua W. | authorlink2=Ekua Brenu | last3 = Staines | first3 = Donald | authorlink3 = Donald Staines | last4 = Marshall-Gradisnik | first4 = Sonya | authorlink4 = Sonya Marshall-Gradisnik| date = 2013 | title = The prevalence of chronic fatigue syndrome/ myalgic encephalomyelitis: a meta-analysis |url =https://www.ncbi.nlm.nih.gov/pubmed/23576883|journal=Clinical Epidemiology|volume=5 | pages = 105β110|doi=10.2147/CLEP.S39876|issn=1179-1349|pmc=3616604|pmid=23576883}}</ref> Estimated incidence rates β generally, the number of new cases in a single year β vary from 0.025%<ref name="bakken2014" /> to 0.3% of the population. === Incidence and prevalence by country === {| class="wikitable" !Country !Incidence !Prevalence rate !Total number |- |Australia | | |242,000 people have CFS (of which 94,000 meet a narrower definition for ME).<ref>''Emerge Quarterly Journal'', AUTUMN 2016 - Vol 36 - No 1, page 14, Mar 2016</ref> |- |United Kingdom |0.015%<ref name="Nacul2011">{{Cite journal | last = Nacul | first = LC | date = July 2011 | title = Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care | url =https://www.ncbi.nlm.nih.gov/pubmed/21794183|journal=BMC Medicine|volume=9 | pages = 91|via=}}</ref> |0.03-0.19%<ref name="Nacul2011" /> |250,000<ref>{{Cite web | last = Working Group on CFS/ME | first = Department of Health | date = 2003-01-11 | title = Annex 1: Epidemiology of CFS/ME| url = https://webarchive.nationalarchives.gov.uk/20120106043826/http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/Browsable/DH_4879305}}</ref> |- |United States | | |836,000 to 2.5 million<ref name="SEID-IOM2015" /><ref name="Key" /> |- |The Netherlands | |0.11%<ref>Bazelmans E, Vercoulen J.H.M.M, Galama J.M.D, Van Weel, C, Van Der Meer J.W.M, Bleijenberg G. (1997). [https://www.ntvg.nl/system/files/publications/1997115200001a.pdf Prevalentie van het chronische-vermoeidheidssyndroom en het primaire-fibromyalgiesyndroom in Nederland.] Nederlands Tijdschrift voor Geneeskunde; 141: 1520-1523.Β </ref><ref>Versluis R.G.J.A, De Waal M.W.M, Opmeer C, Petri H, Springer M.P. (1997). [https://www.ntvg.nl/system/files/publications/1997115230001a.pdf Prevalentie van het chronische-vermoeidheidssyndroom in 4 huisartspraktijken in de regio Leiden.] Nederlands Tijdschrift voor Geneeskunde; 141(31): 1523-26.Β </ref> |30.000-40.000<ref>Health Council of the Netherlands. ME/CFS. The Hague: Health Council of the Netherlands, 2018; publication no. 2018/07.</ref> |} === Incidence and prevalence by definition === {| class="wikitable" !Method !12-month incidence !Prevalence rate |- |[[Postviral fatigue syndrome]] ([[ICD-10-CM]] G93.3 in a national health registry in Norway) |0.025%<ref>{{Cite journal | last = Magnus | first = P | date = November 17, 2015 | title = Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is associated with pandemic influenza infection, but not with an adjuvanted pandemic influenza vaccine | url =https://www.ncbi.nlm.nih.gov/pubmed/26475444|journal=Vaccine|volume=33 | pages = 6173-7|via=}}</ref> (NO) |β |- |[[Fukuda criteria|Fukuda Criteria (CDC-1994 definition]]) | |0.19%<ref name="Nacul2011" /> (UK), 0.24%<ref name="Reyes2003">{{Cite journal | last = Reyes | first = Michele | date = July 14, 2003 | title = Prevalence and Incidence of Chronic Fatigue Syndrome in Wichita, Kansas |url =https://www.ncbi.nlm.nih.gov/pubmed/12860574|journal=JAMA Internal Medicine|volume=163 | pages = 1530-1536|via=}}</ref> (US. Kansas), 0.42%<ref name="Jason, 1999" /> (US, Chicago), |- |[[Canadian Consensus Criteria]] (CCC) | |0.11%<ref name="Nacul2011" /> (UK) |- |Empirical definition ([[Reeves criteria]]) | |2.54%<ref>{{Cite journal | last = Reeves | first = William C. | last2 = Jones | first2 = James F. | last3 = Maloney | first3 = Elizabeth | last4 = Heim | first4 = Christine | last5 = Hoaglin | first5 = David C. | last6 = Boneva | first6 = Roumiana S. | last7 = Morrissey | first7 = Marjorie | last8 = Devlin | first8 = Rebecca | date = 2007-06-08 | title = Prevalence of chronic fatigue syndrome in metropolitan, urban, and rural Georgia| url = https://www.ncbi.nlm.nih.gov/pubmed/17559660|journal=Population Health Metrics|volume=5 | pages = 5|doi=10.1186/1478-7954-5-5|issn=1478-7954|pmc=1904178|pmid=17559660}}</ref> |- |[[Epidemiological Case Definition]] (ECD) |0.015%<ref name="Nacul2011" /> (UK) |0.03%<ref name="Nacul2011" /> (UK) |- |Diagnoses reported by general practitioners and pediatricians in the Netherlands (criteria unspecified) |0.012%<ref name="Nijhof2011">{{Cite journal | last = Nijhof | first = Sanne | authorlink = Sanne Nijhof | date = April 2011 | title = Adolescent Chronic Fatigue Syndrome: Prevalence, Incidence, and Morbidity| url = http://pediatrics.aappublications.org/content/early/2011/04/18/peds.2010-1147|journal=Pediatrics|volume= | pages = |via=}}</ref> (NL, 10-18 year olds) |0.11%<ref name="Nijhof2011" /> (NL, 10-18 year olds) |} == Sex == {{Main article | page_name =Sex differences in myalgic encephalomyelitis}} [[File:Age and Gender distribution.png|thumb|Age and gender distribution of ME/CFS.<ref name="bakken2014" />]] Numerous studies have found the rates of ME/CFS to be substantially higher in adult women than in men, with estimates ranging from 75-85%.<ref name="Jason, 1999" /><ref name="bakken2014" /><ref name="Gunn1993">{{Cite book | title = Ciba Foundation Symposium 173 β Chronic Fatigue Syndrome | last = Gunn | first = Walter| publisher = | year = 1993|isbn=|location= | pages = |chapter=Epidemiology of Chronic Fatigue Syndrome: The Centers for Disease Control Study}}</ref> A higher preponderance of women has also been noted in numerous [[List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks|outbreaks]] including [[1934 Los Angeles atypical polio outbreak|Los Angeles]], [[Akureyri]], [[1953 Maryland outbreak|Rockville, MD]], [[1955 Royal Free Hospital outbreak|Royal Free Hospital]], and [[1956 Punta Gorda outbreak|Punta Gorda, Florida]].<ref name="Parish1978">{{Cite journal | last = Parish | first = JG | date = 1978 | title = Early outbreaks of 'epidemic neuromyasthenia'| url = https://www.ncbi.nlm.nih.gov/pubmed/370810|journal=Postgraduate Medical Journal|volume=54 | pages = 711-7|via= | author-link = Gordon Parish|access-date=}}</ref><ref name="Shelokov, 1957">{{Cite journal | last = Shelokov | first1 = Alexis | author-link1 = Alexis Shelokov | last2 = Habel | first2 = Karl | authorlink2 = Karl Habel | last3 = Verder | first3 = Elizabeth | authorlink3 = Elizabeth Verder | last4 = Welsh | first4 = William | authorlink4 = William Welsh | title = Epidemic Neuromyasthenia β An Outbreak of Poliomyelitis-like Illness in Student Nurses | journal =New England Journal of Medicine | volume = | issue = 257 | page = 345-355 | date = August 1957 | doi = 10.1056/NEJM195708222570801 }}</ref><ref name="Gilliam, 1936-38">{{Cite journal | last = Gilliam | first1 = A.G. | authorlink = Alexander Gilliam | title = Epidemiological Study Of An Epidemic, Diagnosed As Poliomyelitis, Occurring Among The Personnel Of The Los Angeles County General Hospital During The Summer Of 1934 | journal =Public health bulletin, 1936-1938 | volume = | issue = | page = 231-240 | date = 1938 | pmid = | url = http://babel.hathitrust.org/cgi/pt?id=mdp.39015022082260;view=1up;seq=617 |doi= | pages = | pmc = | quote = |access-date=|via=}}</ref><ref name="Acheson, 1959">{{Cite journal | last = Acheson | first1 = E.D. | authorlink =Donald Acheson | title = The Clinical Syndrome Variously Called Benign Myalgic Encephalomyelitis, Iceland Disease and Epidemic Neuromyasthenia | journal =American Journal of Medicine | volume = 26 | issue = 4 | page = 569β595 | date = 1959 | pmid = | url = http://www.name-us.org/defintionspages/DefinitionsArticles/Acheson1959.pdf | pages=|chapter=|edition=|isbn=}}</ref><ref name="Poskanzer, 1957">{{Cite journal | last = Poskanzer | first1 = David C. | author-link1 = David Pskanzer | last2 = Henderson | first2 = Donald A. | authorlink2 = Donald Henderson | last3 = Kunkle | first3 = E. Charles | authorlink3 = | last4 = Kalter | first4 = Seymour S. | authorlink4 = | last5 = Clement | first5 = Walter B. | authorlink5 = | last6 = Bond | first6 = James O. | author-link6 = | title = Epidemic Neuromyasthenia β An Outbreak in Punta Gorda, Florida | journal =New England Journal of Medicine | volume = | issue = 257 | page = 356-364 | date = 1957 | pmid = 13464939 | doi = 10.1056/NEJM195708222570802| url = http://www.nejm.org/doi/full/10.1056/NEJM195708222570802 }}</ref><ref name="PMC1962472">{{Cite journal | date = 1957-10-19 | title = An Outbreak of Encephalomyelitis in the Royal Free Hospital Group, London, in 1955| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1962472/|journal=British Medical Journal|volume=2|issue=5050 | pages = 895β904|issn=0007-1447|pmc=1962472|pmid=13472002}}</ref><ref name="Sigurdsson1950">{{Cite journal| url = https://www.ncbi.nlm.nih.gov/pubmed/14771044 | title = A disease epidemic in Iceland simulating poliomyelitis | last = Sigurdsson | first = B | authorlink = BjΓΆrn Sigurdsson | date = September 1950|journal=American Journal of Hygiene|volume=52 | pages = 222-38|via=}}</ref> In some cases, this was thought to do with the occupational hazard of nursing, but this female-skewed sex ratio was also found in several outbreaks among the general population. However, in other outbreaks, including the 1949-1953 [[1949-53 Adelaide outbreak|Adelaide]] outbreak and an outbreak in [[1955 North of England outbreak|northern England in 1955]], a 1:1 gender ratio was reported.<ref name="Parish1978" /> In [[1948-49 Akureyri outbreak|Akureyri]], a significantly higher incidence rate was found among adult women but not in patients under twenty.<ref name="Sigurdsson1950" /> == Age == New cases of ME/CFS have been in children as young as eight and adults in their eighties. In terms of ''incidence'', a study in [[Norway]] found two age peaks, one between 10 and 19 years and a second peak between 30 and 39 years.<ref name="bakken2014">{{Cite journal | last = Bakken | first = Inger Johanne | authorlink = Inger Johanne Bakken | last2 = Tveito | first2 = Kari | authorlink2 = Kari Tveito | last3 = Gunnes | first3 = Nina | authorlink3 = Nina Gunnes | last4 = Ghaderi | first4 = Sara | authorlink4 = Sara Ghaderi | last5 = Stoltenberg | first5 = Camilla | authorlink5 = Camilla Stoltenberg | last6 = Trogstad | first6 = Lill | author-link6 = Lill Trogstad | last7 = HΓ₯berg | first7 = Siri Eldevik | author-link8 = Per Magnus | last8 = Magnus | first8 = Per | date = 2014-10-01 | title = Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway 2008-2012| url = http://www.ncbi.nlm.nih.gov/pubmed/25274261|journal=BMC medicine|volume=12 | pages = 167|doi=10.1186/s12916-014-0167-5|issn=1741-7015|pmc=4189623|pmid=25274261|via=}}</ref> In terms of ''prevalence'', Jason found that individuals in the 40- to 49-year-old age range exhibited the highest prevalence rates of [[chronic fatigue syndrome]] (CFS).<ref name="Jason, 1999" /> == Race and ethnicity == In 1999, a community-based study by Dr [[Leonard Jason]], et al, performed in the Chicago area found that individuals who identified as people of color exhibited higher rates of CFS than whites, with Latino participants demonstrating the highest CFS prevalence.<ref name="Jason, 1999" /> == Socioeconomic characteristics == The prevalence of CFS was highest among skilled workers and lowest among professionals.<ref name="Jason, 1999">{{Citation | last1 = Jason | first1 = LA | authorlink = Leonard Jason | last2 = Richman | first2 = JA | authorlink2 = | last3 = Rademaker | first3 = AW | authorlink3 = | last4 = Jordan | first4 = KM | authorlink4 = Karen Jordan | last5 = Plioplys | first5 = AV | authorlink5= | last6 = Taylor | first6 = RR | author-link6 = Renee Taylor | last7 = McCready | first7 = W | author-link7 = | last8 = Huang | first8 = C | last9 = Plioplys | first9 =S | author-link9 = | title = A Community-Based Study of Chronic Fatigue Syndrome|journal=Arch Intern Med|volume=159|issue=18| page=2129-2137 | date = 1999 | pmid=|doi=10.1001/archinte.159.18.2129}}</ref> == Severity == [[File:HRQoL-journal.pone.0132421.g003.PNG|200px|thumb|right|Comparison of disability for ME/CFS and other conditions. Source: Hvidberg et al 2015. PLoSOne 10(7):e0132421.<ref name="Hvidberg2015" />]] People with ME/CFS are more disabled and socially marginalized than for most other chronic illnesses.<ref name="Hvidberg2015">{{citation | last = Hvidberg | first1 = Michael Falk | author-link1 = Michael Falk Hvidberg | last2 = Brinth | first2 = Louise Schouborg | authorlink2 = Louise Schouborg Brinth | last3 = Olesen | first3 = Anne V | authorlink3 = Anne V Oleson | last4 = Petersen | first4 = Karin D | authorlink4 = Karin Peterson | last5 = Ehlers | first5 = Lars | authorlink5 = Lars Ehlers | title = The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) | journal =PLoS One|volume =10 |issue =7 | page=e0132421 | date = Jul 6, 2015 | doi = 10.1371/journal.pone.0132421 | url = http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421 }}</ref> Around 25 percent of people with ME/CFS will have a mild form and are able to go to school or work either part-time or full-time, while reducing other activities. About 50 percent will have a moderate to severe form of ME/CFS and are unlikely to able to study or work. Another 25 percent will experience [[Severe and very severe ME|severe ME/CFS]] and have to stay at home or in bed.<ref name="SEID-IOM2015" /> According to the CDC, up to the 75% of [[US|United States]] patients with [[ME/CFS]] are too ill to work,<ref name="CDC2016">{{Citation | last = Lapp | first = C | authorlink = Charles Lapp | last2 = Unger | first2 = ER | authorlink2 = Elizabeth Unger | last3 = Komaroff | first3 = AL | authorlink3 = Anthony Komaroff | last4 = Nath | first4 = A . | authorlink4 = Avindra Nath | title = CDC public health grand rounds. Chronic fatigue syndrome: advancing research and clinical education|website=[[Centers for Disease Control and Prevention]] | date = Feb 2016|access-date=2020-04-03 | url = https://www.cdc.gov/grand-rounds/pp/2016/20160216-presentation-chronic-fatigue-H.pdf}}</ref> with rates of between 50 and 75% [[disability|too ill to work worldwide]].<ref name="Vink2019">{{Cite journal | last = Vink | last2 = Vink-Niese | date = 2019-09-20 | title = Work Rehabilitation and Medical Retirement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. A Review and Appraisal of Diagnostic Strategies |url =https://www.mdpi.com/2075-4418/9/4/124/htm|journal=Diagnostics|language=en|volume=9|issue=4 | pages = 124|doi=10.3390/diagnostics9040124|issn=2075-4418 | first = Mark | first2 = Alexandra|pmc=|pmid=|quote= | author-link = Mark Vink | authorlink2 = Alexandra Vink-Niese|access-date=|via=}}</ref> A study in France by Ghali et al 2020 looked at factors associated with increased severity of [[post-exertional malaise]] (PEM), the hallmark symptom, and found that onset at age 32 or later, a gastrointestinal illness triggering ME/CFS and recurrent infections during the illness all increased risk of having more severe PEM.<ref name="Ghali2020">{{Cite journal | last = Ghali | first = Alaa | author-link = Alaa Ghali | last2 = Richa | first2 = Paul | authorlink2 = | last3 = Lacout | first3 = Carole | authorlink3 = | last4 = Gury | first4 = Aline | authorlink4 = | last5 = Beucher | first5 = Anne-Berengere | authorlink5 = | last6 = Homedan | first6 = Chadi | author-link6 = | last7 = Lavigne | first7 = Christian | last8 = Urbanski | first8 = Geoffrey | date = 2020-06-22 | title = Epidemiological and clinical factors associated with post-exertional malaise severity in patients with myalgic encephalomyelitis/chronic fatigue syndrome | url =https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7309998/|journal=Journal of Translational Medicine|volume=18|issue= | pages = |doi=10.1186/s12967-020-02419-4|issn=1479-5876|pmc=7309998|pmid=32571354|access-date=|quote=|via= | author-link8 = Geoffrey Urbanski}}</ref> == <span id="riskfactors">Risk factors </span>== === Genetics === {{Main article| page_name = Genetics of chronic fatigue syndrome}} Five percent of children of mothers with ME/CFS later developed the illness.<ref name="Underhill2010">{{Cite web | url=http://www.njcfsa.org/wp-content/uploads/2010/09/Pregnancy-in-Women-with-ME-CFS.pdf | title=Pregnancy in Women with Chronic Fatigue Syndrome (ME/CFS) | last = Underhill | first = Rosemary | authorlink = Rosemary Underhill | date = 2009 | website = New Jersey Chronic Fatigue Syndrome Association, Inc.|archive-url=|archive-date=|access-date=4 February 2020}}</ref> === Infection === [[Infection]]s are a risk factor for the development of ME/CFS.<ref name="CDC-Etiology">{{Cite web | url=https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/etiology-pathophysiology.html | title = Etiology and Pathophysiology {{!}} Presentation and Clinical Course {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2018-11-08 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-01-31}}</ref> The vast majority of people diagnosed with ME/CFS report that their illness began after a virus or other infection, especially [[Epstein-Barr virus]], [[Ross River virus]] and [[Q fever]].<ref name="CDC-causes-2018" /><ref name="Chu2019">{{Cite journal | last = Chu | first = Lily | author-link = Lily Chu | last2 = Valencia | first2 = Ian J. | authorlink2 = Ian Valencia | last3 = Garvert | first3 = Donn W. | author-link3 = Donn Garvert | last4 = Montoya | first4 = Jose G. | author-link4 = Jose Montoya | date = Feb 5, 2019 | title = Onset Patterns and Course of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | url =https://www.frontiersin.org/articles/10.3389/fped.2019.00012/abstract|journal=Frontiers in Pediatrics|volume=7|issue=12 | pages = |doi=10.3389/fped.2019.00012|quote=|via=}}</ref> One study found recurrent infections since the onset of ME/CFS increased the risk of more severe post-exertional malaise.<ref name="Ghali2020" /> === Bodily response to physical or emotional stress === An accident, physical [[trauma]], [[Guide for patients having surgery|anesthetics]], or significant emotional [[stress]] have been reported by some patients prior to onset of symptoms.<ref name="CDC-Etiology" /> According to the CDC, this may cause a physical response by affecting body chemistry including the [[HPA axis]], levels of [[CRH|corticotrophin-releasing hormone]] (CRH), the stress hormone [[cortisol]] and others.<ref name="CDC-causes-2018">{{Cite web | url=https://www.cdc.gov/me-cfs/about/possible-causes.html | title = Possible Causes {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) {{!}} CDC | last = Centers for Disease Control | first = | authorlink = Centers for Disease Control and Prevention | date = 2019-05-15 | website = [[Centers for Disease Control and Prevention]]|language=en-us|archive-url=|archive-date=|access-date=2020-05-24}}</ref> === Environmental factors === [[Mold]] or toxin exposure is an expected trigger although specific environmental factors with ME/CFS have not been established.<ref name="CDC-Etiology" /><ref name="ICP2011primer" />{{Rp|1-2}} == Prognosis == The [[Prognosis for myalgic encephalomyelitis and chronic fatigue syndrome|prognosis]] for ME/CFS is considered to be poor with only a minority (a median estimate of 5%) returning to pre-morbid levels of functioning.<ref name="Cairns2005">{{Cite journal | last = Cairns | first = R. | last2 = Hotopf | first2 = M. | date = Jan 2005 | title = A systematic review describing the prognosis of chronic fatigue syndrome | url =https://www.ncbi.nlm.nih.gov/pubmed/15699087|journal=Occupational Medicine (Oxford, England)|volume=55|issue=1 | pages = 20β31|doi=10.1093/occmed/kqi013|issn=0962-7480|pmid=15699087}}</ref>Β The majority of patients remains significantly impaired. A substantial improvement however is noted in an estimated 40% of patients<ref name="Cairns2005" /><ref>{{Cite journal | last = Joyce | first = J. | last2 = Hotopf | first2 = M. | last3 = Wessely | first3 = S. | date = Mar 1997 | title = The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review | url =https://www.ncbi.nlm.nih.gov/pubmed/9093600|journal=QJM: monthly journal of the Association of Physicians|volume=90|issue=3 | pages = 223β233|issn=1460-2725|pmid=9093600}}</ref> and the prognosis in adolescents is considered to be better than in adults.<ref name="CDC-prognosis">{{Cite web | url=https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/prognosis.html | title = Prognosis {{!}} Presentation and Clinical Course {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2018-07-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-10-28}}</ref><ref name="Rowe2017">{{Cite journal | last = Rowe | first = Peter C. | authorlink = Peter Rowe | last2 = Underhill | first2 = Rosemary A. | authorlink2 = Rosemary Underhill | last3 = Friedman | first3 = Kenneth J. | author-link3 = Kenneth Friedman | last4 = Gurwitt | first4 = Alan | authorlink4 = Alan Gurwitt | first5 = Marvin S. | last5 = Medow | authorlink5 = Marvin Medow | last6 = Schwartz | first6 = Malcolm S. | author-link6 = Malcolm Schwartz | last7 = Speight | first7 = Nigel | author-link8 = Julian Stewart | last8 = Stewart | first8 = Julian M. | last9 = Vallings | first9 = Rosamund | author-link9 = Rosamund Vallings | last10 = Rowe | first10 = Katherine | author-link10 = Katherine Rowe | date = 2017 | title=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer |url =https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full|journal=Frontiers in Pediatrics|language=English|volume=5 | pages = 121|doi=10.3389/fped.2017.00121|issn=2296-2360|quote=}}</ref><ref>{{Cite news |url =https://twitter.com/keithgeraghty/status/1052054136412430336 | title = Dr Keith Geraghty on Twitter|work=Twitter|access-date=2018-10-28|language=en}}</ref> ==Mortality== One study found no increased risk of all cause mortality or mortality from [[cancer]] but an increased risk of suicide. Suicide risk was increased 6.85 compared to the general population.<ref>{{Cite journal | last = Roberts | first = Emmert | last2 = Wessely | first2 = Simon | last3 = Chalder | first3 = Trudie | last4 = Chang | first4 = Chin-Kuo | last5 = Hotopf | first5 = Matthew | date = Apr 2016 | title = Mortality of people with chronic fatigue syndrome: a retrospective cohort study in England and Wales from the South London and Maudsley NHS Foundation Trust Biomedical Research Centre (SLaM BRC) Clinical Record Interactive Search (CRIS) Register |url =http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)01223-4/abstract|journal=The Lancet|language=English|volume=387|issue=10028 | pages = 1638β1643|doi=10.1016/S0140-6736(15)01223-4|issn=0140-6736}}</ref> It was based on a cohort that used multiple clinical criteria, including the [[Oxford criteria]]<ref>[https://jcoynester.wordpress.com/2016/02/16/bad-stats-non-sequitur-conclusions-in-lancet-chronic-fatigue-syndromesuicide-study/ Interpretive jiggery-pokery in The Lancet A tale of a convenience sample with inconvenient serious limitations.] Quick Thoughts, a blog by James Coyne, February 16, 2016</ref> which was later recommended for retirement due to the likelihood of including patients without ME/CFS. A [[Spain|Spanish]] study found a suicide risk of 12.75% versus 2.3% in the general population.<ref>{{Cite news |url =https://afectadasporlosrecortessanitarios.wordpress.com/2016/05/11/risk-of-suicide-due-to-neglect-amongst-pwme/ | title = RISK OF SUICIDE DUE TO NEGLECT AMONGST PWME | date = 2016-05-11|work=Plataforma de Afectadas por los Recortes Sanitarios - La PARS|access-date=2018-08-10|language=}}</ref> A 2006 study by [[Leonard Jason]] found that ME/CFS patients died of cancer, heart failure and [[suicide]] at considerable younger age than the general population. For example while the median age of death for cancer in the US was 72, the average age at which ME/CFS patients died of cancer was 47. And while the average age of heart failure in the general population was 83, it was only 58 in the ME/CFS sample.<ref>{{Cite journal | last = Jason | first = Leonard A. | last2 = Corradi | first2 = Karina | last3 = Gress | first3 = Sara | last4 = Williams | first4 = Sarah | last5 = Torres-Harding | first5 = Susan | date = Aug 2006 | title = Causes of death among patients with chronic fatigue syndrome | url =https://www.ncbi.nlm.nih.gov/pubmed/16844674|journal=Health Care for Women International|volume=27|issue=7 | pages = 615β626|doi=10.1080/07399330600803766|issn=0739-9332|pmid=16844674}}</ref> {{See also|Causes of death|Causes of death||||}} == See also == *[[Onset of ME/CFS]] *[[Pediatric myalgic encephalomyelitis/chronic fatigue syndrome]] *[[Prevalence of myalgic encephalomyelitis and chronic fatigue syndrome|Prevalence]] *[[Prognosis]] *[[Sex differences in myalgic encephalomyelitis]] *[[Causes of death]] *[[Eightfold increase in ME/CFS incidence in the 1980s]] == Learn more == *[https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf ME/CFS Key Facts (leaflet)] - CDC *[https://www.cdc.gov/grand-rounds/pp/2016/20160216-presentation-chronic-fatigue-H.pdf CDC Public Health Grand Rounds - Chronic Fatigue Syndrome - Advancing Research and Clinical Education (presentation, 2016)] *2019, [https://www.mdpi.com/2075-4418/9/4/124/htm Work Rehabilitation and Medical Retirement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. A Review and Appraisal of Diagnostic Strategies] ==References== {{reflist}} [[Category:Core topics]] [[Category:Epidemiology]]
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