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Primer for the public
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{{mbox|text= Editors: Edits to this Primer may require the same edits to the other [[:Category:Primers|Primers]].}} '''Primer for the public''' offers a broad audience detailed information on [[myalgic encephalomyelitis]] (ME) and [[chronic fatigue syndrome]] (CFS), complex, chronic, and poorly understood medical conditions. ME was first categorized as a [[Nervous system|neurological]] disease by the [[World Health Organization]] (WHO) in 1969.<ref name="icd10">{{Cite book |url=https://apps.who.int/iris/bitstream/handle/10665/70934/ICD_10_1969_eng_v2a.pdf?sequence=3&isAllowed=y | title = International Classification of Diseases | last = World Health Organization | first = |publisher=WHO| year = 1969|isbn=|editor-link=|edition=Eighth revision|volume=2|location=Geneva|pages=173|chapter=|quote=Encephalomyelitis (chronic),<br>(myalgic, benign) 323}}</ref> [[Chronic fatigue syndrome|CFS]] was first formally defined by the United States [[Centers for Disease Control|Centers for Disease Control and Prevention]] (CDC) in 1988 as a framework for researching unexplained [[chronic fatigue]] (CF) associated with a [[mononucleosis]]-like syndrome. There remains a lack of consensus among members of the medical and research communities regarding the equivalence of [[Myalgic encephalomyelitis|ME]] and CFS. Some believe that CFS is intended to describe the same disease entity as ME, while others believe that they are distinct illnesses but with overlapping symptom profiles. In deference to this lack of consensus, the combined term [[ME/CFS]] is often used. <embedvideo service="youtube" dimensions="400" alignment="right" container="frame" description="''What is ME/CFS'' By Open Medicine Foundation - OMF. Linda Tannenbaum, Founder & CEO/President, talks about ME/CFS and how OMF is leading research and delivering hope (2018)">https://www.youtube.com/watch?v=pqDubEeIBtA</embedvideo> The core [[List of symptoms in ME CFS|ME/CFS symptoms]] are: [[post-exertional malaise]] (PEM), [[chronic fatigue]] (CF), [[unrefreshing sleep]]/[[Sleep dysfunction|sleep problems]], and [[Cognitive dysfunction|cognitive impairment]]/[[brain fog]] and/or [[orthostatic intolerance]] (OI).<ref name="symptoms" /><ref name="IOM2015MECFS"/> A patient can have many more symptoms<ref name="whatis"/> and meet different criteria. [[Systemic Exertion Intolerance Disease]] (SEID), an ME/CFS criteria, allows for a patient to be [[Systemic Exertion Intolerance Disease#Diagnostic criteria|diagnosed with the minimum core symptoms]]<ref name="DiagnosticAlgorithm">{{Cite web|url=http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_DiagnosticAlgorithm | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness - Diagnostic Algorithm | last = | first = | authorlink = | date = 2015 | website = National Academies|archive-url=|archive-date=|access-date=}}</ref><ref name="guide">{{Cite web|url=http://iom.nationalacademies.org/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness {{!}} Clinicians Guide | last = | first = | date = 2015 | website = Nation Academies|archive-url=|archive-date=|access-date=}}</ref> and the patient may have other symptoms.<ref name="guide"/>{{Rp|9}} The [[Canadian Consensus Criteria]] (CCC) requires the core symptoms and [[Nervous system|neurological]], [[Autonomic nervous system|autonomic]], [[Neuroendocrine system|neuroendocrine]], [[immune system]], and [[myalgia]] symptoms to meet [[Canadian Consensus Criteria#Definition|its ME/CFS diagnostic criteria]].<ref name="Carruthers, 2003">{{Cite journal | 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 | authorlink9 = 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> The [[International Consensus Criteria]] (ICC) is used to diagnose [[myalgic encephalomyelitis]] (ME) which requires the core symptoms and neurological, immune/[[Gastrointestinal system|gastrointestinal]]/genitourinary impairment, and [[portal:Energy metabolism|energy metabolism]]/[[Ion transportation|ion transport]] impairment [[International Consensus Criteria#Criteria|symptoms for a diagnosis]].<ref name="ICC">{{Cite journal | last = Carruthers | first = Bruce M. | author-link = 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 | author-link5 = Gordon Broderick | last6 = Mitchell | first6 = Terry | authorlink6 = Terry Mitchell | last7 = Staines | first7 = Donald | author-link7 = Donald Staines | last8 = Powles | first8 = A.C. Peter | author-link8 = A C Peter Powles | last9 = Speight | first9 = Nigel | authorlink9 = 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> Although the [[Fukuda criteria|Fukuda]]<ref name="fukuda1994">{{Cite journal | last = Fukuda | first = K. | author-link = Keiji Fukuda | last2 = Straus | first2 = S.E. | authorlink2 = Stephen Straus | last3 = Hickie | first3 = I. | authorlink3 = Ian Hickie | last4 = Sharpe | first4 = M.C. | authorlink4 = Michael Sharpe | last5 = Dobbins | first5 = J.G. | authorlink5 = James Dobbins | last6 = Komaroff | first6 = A. | authorlink6 = Anthony Komaroff | date = 1994-12-15 | title = The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group | url =https://www.researchgate.net/profile/Michael_Sharpe2/publication/247808895_The_Chronic_Fatigue_Syndrome_A_Comprehensive_Approach_to_Its_Definition_and_Study/links/0c96053201643bfc4b000000/The-Chronic-Fatigue-Syndrome-A-Comprehensive-Approach-to-Its-Definition-and-Study.pdf|journal=Annals of Internal Medicine|volume=121|issue=12 | pages = 953–959|issn=0003-4819|pmid=7978722|via=|doi=10.7326/0003-4819-121-12-199412150-00009|publisher=American College of Physicians}}</ref> and the [[Oxford criteria|Oxford Criteria]]<ref name="PMC1293107">{{Cite journal | title = A report--chronic fatigue syndrome: guidelines for research.|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293107/|journal=Journal of the Royal Society of Medicine | date = Feb 1991|issn=0141-0768|pmc=1293107|pmid=1999813|pages=118–121|volume=84|issue=2 | first = M C | last = Sharpe | first2 = L C | last2 = Archard | first3 = J E | last3 = Banatvala | first4 = L K | last4 = Borysiewicz | first5 = A W | last5 = Clare | first6 = A | last6 = David | first7 = RH | last7 = Edwards | first8 = KE | last8 = Hawton | first9 = HP | last9 = Lambert}}</ref> are used for diagnosing [[chronic fatigue syndrome]] (CFS), they are both overly broad and there is criticism that patients are being [[misdiagnosis of myalgic encephalomyelitis and chronic fatigue syndrome|misdiagnosed]] in both clinical and research settings as having [[Chronic fatigue syndrome|CFS]] when in fact they are suffering from the symptom [[chronic fatigue (symptom)|chronic fatigue]] (CF).<ref name="ICC"/><ref>{{Cite web | title = What Does a True ME Definition Look Like?|url=https://www.meadvocacy.org/what_does_a_true_me_definition_look_like|website=MEadvocacy.org|access-date=2019-01-25|first = | last = }}</ref><ref name="fukuda1994" /><ref>{{Cite web|url=http://occupyme.net/2016/08/16/ahrq-evidence-review-changes-its-conclusions/|website=occupyme.net|access-date=2019-01-25 | title = AHRQ Evidence Review Changes Its Conclusions | date = Aug 16, 2016 | last = Spotila | first=Jennie | authorlink=Jennie Spotila | last2 = Dimmock | first2 = Mary | authorlink2 = Mary Dimmock|archive-url=|archive-date=}}</ref> There have been media reports of athletes diagnosed with ME or CFS who have recovered in a relatively short period of time after rest, supplementation, and diet changes;<ref name="Inews2017">{{Cite news |url = https://inews.co.uk/news/health/marathon-runner-quit-work-me-cfs-diet-change/ | title = Marathon runner forced to quit work after developing ME claims diet change gave him his life back | first = Claudia | last = Tanner|publisher =iNews | date = 2018}}</ref><ref name="Times2017">{{Cite news | url=https://www.thetimes.co.uk/article/muslim-fighter-with-me-who-left-an-arranged-marriage-to-win-world-title-svxhhzt57 | title = Muslim fighter with ME who left an arranged marriage to win world | last = Broadbent | first = Rick | date = 2017-12-02|work=The Times|access-date=2019-02-28|archive-url=|archive-date=|language=en|issn=0140-0460|quote=}}</ref><ref name="ABC2018">{{Cite news |url = http://www.abc.net.au/7.30/committee-reviews-potentially-harmful-and-old/10010408 |at=6mins 18s| title = Committee reviews 'potentially harmful and old fashioned' chronic fatigue treatments|publisher =ABC News | first =Andy|last = Park | first2 = Clare | last2 = O'Halloran}}</ref><ref name="Times2019">{{Cite news | url=https://www.thetimes.co.uk/article/nathan-douglas-london-2012-was-the-darkest-period-of-my-life-vxt5gftcx | title = Nathan Douglas: London 2012 was the darkest period of my life | last = Broadbent | first = Rick | date = 2019-02-27|work=The Times|access-date=2019-02-28|archive-url=|archive-date=|language=en|issn=0140-0460|quote=}}</ref> these athletes may have had [[overtraining syndrome]] (which has the symptom of CF) and not ME, CFS.<ref name="spence"/> Some people with [[Addison's disease|adrenal failure]], [[idiopathic chronic fatigue]], or other fatiguing illnesses are erroneously diagnosed with CFS.<ref name="Devasahayam2012">{{Cite journal | last = Devasahayam | first = Anoop | author-link = | last2 = Lawn | first2 = Tara | author-link2 = | last3 = Murphy | first3 = Maurice | author-link3 = | last4 = White | first4 = Peter D | authorlink4 = Peter White | date = Jan 2012 | title = Alternative Diagnoses to Chronic Fatigue Syndrome in Referrals to a Specialist Service: Service Evaluation Survey|url=https://journals.sagepub.com/doi/epub/10.1258/shorts.2011.011127|journal=JRSM Short Reports|volume=3|issue=1|pages=1–5|doi=10.1258/shorts.2011.011127|issn=2042-5333|pmc=PMC3269106|pmid=22299071|access-date=|quote=Half of all the referred patients to a specialist CFS clinic had alternative medical and psychiatric diagnoses.|via=}}</ref> CF is a symptom of many diseases, and illnesses, and should not be confused with the grossly misnamed disease CFS.<ref name="Carruthers, 2003" /> The acronym ME/CFS is widely used in research, clinicians, and patient organizations, and patients. "The most common overlapping condition with ME/CFS is [[fibromyalgia]]."<ref name="ICC2011primer" /><ref name="Jason2001">{{Cite journal | last= Jason | first = Leonard | last2 = Taylor | first2 = R.R. | last3 = Kennedy | first3 = C.L. | last4 = Song | first4 = S | last5 = Johnson | first5 = D | last6 = Torres | first6 = S.R. | date = 2001-01-01 | title = Chronic fatigue syndrome: Comorbidity with fibromyalgia and psychiatric illness|url=https://www.researchgate.net/publication/285787383_Chronic_fatigue_syndrome_Comorbidity_with_fibromyalgia_and_psychiatric_illness|journal=Medicine and Psychiatry|volume=4|pages=29–34}}</ref> While some have posited ME/CFS and fibromyalgia are variants of the same illness, [[Benjamin Natelson]], MD summoned considerable amounts of data that suggest the two illnesses differ with different pathophysiologic processes leading to different treatments.<ref name="Natelson2019">{{Cite journal | last = Natelson | first = Benjamin H. | date = 2019-02-19 | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia: Definitions, Similarities, and Differences|url=https://www.clinicaltherapeutics.com/article/S0149-2918(19)30003-7/abstract|journal=Clinical Therapeutics|language=English|volume=41|issue=4 | pages = 612|doi=10.1016/j.clinthera.2018.12.016|issn=0149-2918|pmid=30795933}}</ref> Unfortunately, a psychiatric approach has been taken with ME/CFS, but this is changing. At this time there are no approved drug treatments. [[Graded exercise therapy]] (GET) and [[cognitive behavioral therapy]] (CBT) are being abandoned in the [[United Kingdom|UK]] due to ineffectiveness and high rates of harm.<ref name="OxfordBrookesSurvey" /><ref name="niceng206"/> The CDC website states "ME/CFS is a '''biological illness''', not a psychologic disorder" and impacts multiple body systems.<ref name="etiology">{{Cite web | title = Etiology and Pathophysiology {{!}} Presentation and Clinical Course {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)|url=https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/etiology-pathophysiology.html|website=[[Centers for Disease Control and Prevention]] | date = 2018-11-08|access-date=2019-01-22|language=en-us}}</ref> The CDC recognizes the hallmark symptom of PEM which is a [[post-exertional malaise|worsening of symptoms after physical, mental or emotional exertion]]<ref name="symptoms">{{Cite web | title = Symptoms of ME/CFS {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)|url=https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html|website=[[Centers for Disease Control and Prevention]] | date = 2019-01-18|access-date=2019-01-22|language=en-us}}</ref> and says [[ME/CFS]] is a "disabling and complex disease."<ref name="whatis">{{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=2019-04-12}}</ref> [[File:SEID algorithm.JPG|400px|thumb|right|Diagnostic Algorithm for [[Systemic Exertion Intolerance Disease|SEID]]'s minimum [[List of symptoms in ME CFS#Systemic Exertion Intolerance Disease (SEID) symptom list|ME/CFS core symptoms]]]] == Disease onset and course of illness== [[Onset of ME/CFS|ME/CFS can begin]] from many acute/sudden<ref name="Chu2019">{{Cite journal | last = Chu | first = Lily | authorlink = Lily Chu | last2 = Valencia | first2 = Ian J. | authorlink2 = Ian Valencia | last3 = Garvert | first3 = Donn W. | authorlink3 = | last4 = Montoya | first4 = Jose G. | authorlink4 = Jose Montoya | author-link5 = | date = Jan 14, 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=|issue=|pages=|doi=10.3389/fped.2019.00012|quote=|via=}}</ref> events: usually [[Viral onset hypothesis|viral]] or [[Bacterial disease onset|bacterial]] infections, but also [[trauma]], surgery or childbirth, [[allergies|allergic reaction]], and [[stress]].<ref name="grandround"/> There is also a gradual onset in some people,<ref name="Chu2019" /><ref name="clinical">{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/index.html | title = Presentation and Clinical Course of ME/CFS {{!}} Information for Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS | date = 2018-12-12 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-02-07}}</ref> that is not attributed to any one event. Occasionally, ME/CFS has been triggered by [[Environmentally acquired illness|environmental toxins]] or the receipt of an [[Vaccine|immunizing injection]].<ref name="IACFSME2014primer">{{citation | last1 = ((International Association for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis)) | authorlink=International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis | last2 = Friedberg | first2 = Fred | authorlink2 = Fred Friedberg | last3 = Bateman | first3 = Lucinda | authorlink3 = Lucinda Bateman | last4 = Bested | first4 = Alison C | authorlink4 = Alison Bested | last5 = Davenport | first5 = Todd | authorlink5 = Todd Davenport | last6 = Friedman | first6 = Kenneth J | authorlink6 = Kenneth Friedman | last7 = Gurwitt | first7 = Alan R | authorlink7 = Alan Gurwitt | last8 = Jason | first8 = Leonard A | authorlink8 = Leonard Jason | last9 = Lapp | first9 = Charles W | authorlink9 = Charles Lapp | last10 = Stevens | first10 = Staci R | authorlink10 = Staci Stevens | last11 = Underhill | first11 = Rosemary A | authorlink11 = Rosemary Underhill | last12 = Vallings | first12 = Rosamund | authorlink12 = Rosamund Vallings | date = 2014 | url=https://www.massmecfs.org/images/pdf/Primer_2014.pdf | title =Chronic Fatigue Syndrome Myalgic Encephalomyelitis Primer for Clinical Practitioners }}</ref> Some say that the disease [[Myalgic encephalomyelitis|ME]] always has an acute/sudden [[Infection|infectious]] onset.<ref name="Evans2018">{{Cite journal | last = Evans | first = Meredyth | authorlink = Meredyth Evans | authorlink2 = Leonard Jason | first2 = Leonard | last2 = Jason | date = 2018 | title=Onset patterns of chronic fatigue syndrome and myalgic encephalomyelitis|url=https://www.openaccessjournals.com/articles/Onset%20patterns%20of%20chronic%20fatigue%20syndrome%20and%20myalgic%20encephalomyelitis.pdf|journal=Research on Chronic Diseases|volume=|issue=|pages=2|quote=|via=}}</ref> The disease [[ME/CFS]] is often diagnosed when a person who does not recover from a [[flu-like illness]], [[mononucleosis]] or another [[HHV|herpesvirus]], [[Q fever]], an unidentified [[virus]], or [[:Category:Infectious agents|other infection]] meets one or more [[Definitions of myalgic encephalomyelitis and chronic fatigue syndrome|diagnostic criteria for either ME, CFS, or ME/CFS]].<ref name="IOM2015MECFS-Ch7">{{citation | 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|at=Chapter 7}}</ref><ref>[http://www.cortjohnson.org/blog/2014/01/09/lipkin-study-vagus-nerve-hhv-6-loomis-hhv-6-foundation/ The Lipkin Study, The Vagus Nerve Infection Hypothesis and HHV-6: Kristin Loomis of the HHV-6 Foundation Talks – Pt. I - Health Rising - By: Cort Johnson - June 2014]</ref> Patients experience [[List of symptoms in ME CFS|numerous symptoms]] and disease severity which fluctuate from day to day, week to week, month to month, year to year, and even decade to decade. Furthermore, symptoms and disease severity vary among patients.<ref name="IACFSME2014primer"/><ref name="webmd">{{Cite web|url=http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms | title = Chronic Fatigue Syndrome - Symptoms | website = WebMD|access-date=2021-11-22}}</ref> The CDC recognizes that there can be different causes and it is possible that two or more things could cause the illness. Areas of research include infections, [[immune system]] changes, [[stress]] affecting body chemistry, changes in [[Metabolic|energy production]], and a possible [[Genetics of chronic fatigue syndrome|genetic link]].<ref name="causes">{{Cite web | title = Possible Causes {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)|url=https://www.cdc.gov/me-cfs/about/possible-causes.html|website=[[Centers for Disease Control and Prevention]] | date = 2019-01-18|access-date=2019-01-27|language=en-us}}</ref><ref name="etiology" /> The CDC notes there are abnormalities with the immune system, [[Metabolic|cellular metabolism]], neuroendocrine disturbances, and [[blood pressure]] or heart rate regulation.<ref name="etiology" /> ===Not a mental health disorder=== In the past, CFS was believed to be a mental health disorder. This is why the CDC now states: "ME/CFS is a biological illness, not a psychologic disorder. Patients with ME/CFS are neither malingering nor seeking secondary gain. These patients have multiple pathophysiological changes that affect multiple systems."<ref name="etiology" /> ===No clear evidence that ME/CFS is contagious=== [[:Category:Infectious agents|Infectious episodes]] have led to [[List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks|outbreaks]] over the years and 72% of ME/CFS patients report an [[Onset of ME/CFS|onset]] of a viral or bacterial infection.<ref name="grandround">{{Cite web|url=https://www.cdc.gov/grand-rounds/pp/2016/20160216-presentation-chronic-fatigue-H.pdf | title = Public Health Grand Rounds - Chronic Fatigue Syndrome - Advancing Research and Clinical Education | last = | first = | authorlink = | date = |website=[[Centers for Disease Control and Prevention]] | page = 6|archive-url=|archive-date=|access-date=}}</ref> Nowadays, the vast majority of ME/CFS cases are sporadic rather than epidemic, and although some outbreaks have been caused by known viruses - such as the [[2003 Hong Kong outbreak|SARS pandemic]] and [[2019 Coronavirus pandemic outbreak|COVID-19]] - there is no clear evidence that sporadic ME/CFS cases are contagious.<ref name="pediatricprimer">{{Cite journal | last = Rowe | first = Katherine S. | last2 = Vallings | first2 = Rosamund | last3 = Stewart | first3 = Julian M. | last4 = Speight | first4 = Nigel | last5 = Schwartz | first5 = Malcolm S. | last6 = Medow | first6 = Marvin S. | last7 = Gurwitt | first7 = Alan | last8 = Friedman | first8 = Kenneth J. | last9 = Underhill | first9 = Rosemary A. | 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|doi=10.3389/fped.2017.00121|issn=2296-2360}}</ref> Families, partners, and friends do not report contracting ME/CFS from someone with the disease nor do patients report passing it on to others.<ref>{{Cite web|url=http://forums.prohealth.com/forums/index.php?threads/is-cfs-contagious.189664/ | title = Is CFS contagious? {{!}} ProHealth Fibromyalgia, ME/CFS and Lyme Disease Forums|website=forums.prohealth.com|access-date=2019-02-13}}</ref> However, Underhill and O'Gorman (2006) researched 219 patients with ME/CFS, and concluded that close household contact and genetics were both risk factors for CFS, finding 3.2% of spouses/partners of those with CFS also had the illness.<ref name="UnderhillInfectious">{{Cite journal | last = Underhill | first = Rosemary A. | last2 = O'Gorman | first2 = Ruth | date = 2006-01-01 | title = Prevalence of Chronic Fatigue Syndrome and Chronic Fatigue Within Families of CFS Patients|url=https://doi.org/10.1300/J092v13n01_02|journal=Journal of Chronic Fatigue Syndrome|volume=13|issue=1|pages=3–13|doi=10.1300/J092v13n01_02|issn=1057-3321}}</ref> This was a higher prevalence than all genetic relatives except children of patients. Because ME/CFS can run in families, a [[Genetics of chronic fatigue syndrome|genetic link]] is a line of research recommended by the CDC.<ref name="causes" /><br /> [[Michael Sikora]] and collaborators at the [[Open Medicine Foundation]] hope that their research on the role of [[T cell]]s and immune-related [[Genetics of chronic fatigue syndrome|genes]] will help address "whether ME/CFS is an autoimmune or infectious disease, or simply an activation of the immune system".<ref name="omf-funded">{{Cite web|url=https://www.omf.ngo/2018/06/04/omf-funded-research/ | title = OMF funded research | date = Jun 4, 2018 | website = [[Open Medicine Foundation]]}}</ref> ====Blood donation and organ transplant==== A [[Blood donation|tissue and blood donation]] ban is in force for ME/CFS in the [[United Kingdom]] (even if recovered),<ref name="BloodUK">{{Cite web | url = https://my.blood.co.uk/KnowledgeBase | title = Knowledgebase|website=My Donor Record - Health, Eligibility & Travel | last = | first = | authorlink = |archive-url=|archive-date=|url-status=|access-date=2021-10-08}}</ref> [[Australia]],<ref name="donate">{{Cite web|url = https://www.donateblood.com.au/faq/chronic-fatigue-syndrome |title=Chronic fatigue syndrome – I have/had chronic fatigue syndrome. Can I donate?|access-date=2022-05-25|website = Australian Red Cross}}</ref> [[New Zealand]],<ref name="NZBlood">{{Cite web |url = https://www.nzblood.co.nz/become-a-donor/am-i-eligible/detailed-eligibility-criteria/ | title = Detailed Eligibility Criteria|access-date=2022-05-25 | date = |website=NZ Blood|quote=}}</ref> most of [[Canada]],<ref name="Wilson2014">{{Cite journal | title = The Use of Preliminary Scientific Evidence in Public Health: A Case Study of XMRV | date = 2014-04-08 | url = https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1001623|journal=PLOS Medicine|volume=11|issue=4| pages = e1001623 | last = Wilson | first = Kumanan | last2 = Atkinson | first2 = Katherine | last3 = Keelan | first3 = Jennifer|language=en|doi=10.1371/journal.pmed.1001623|pmc=PMC3979645|pmid=24714396|issn=1549-1676}}</ref> and for a time also in the [[United States]],<ref name="post">{{Cite web | url = http://voices.washingtonpost.com/checkup/2010/12/red_cross_bars_chronic_fatique.html | title = Red Cross bars chronic fatigue patients from donating blood | last = Stein | first = Rob | authorlink = | date = Dec 3, 2010 | website = Washington Post|archive-url=|archive-date=|access-date=2022-05-25}}</ref> initially due to the research on [[Xenotropic murine leukemia virus-related virus|XMRV]] as being the likely infectious trigger of CFS<ref>{{Cite web | url = https://www.meassociation.org.uk/2010/04/xmrv-testing-in-the-uk/ | title = XMRV testing in the UK | last = | first = | author-link =| date = 2010 | website = [[ME Association]]|language=en-US|archive-url=|archive-date=|access-date=2019-02-13}}</ref> and showing that patients carried the virus.<ref name="post" /> Two papers on XMRV were retracted as the result was caused by laboratory contamination,<ref name="Redaction2012">{{Cite journal | date = Dec 2012 | title = Redaction, retraction and reaction | url = https://www.nature.com/articles/nrmicro2928|journal=Nature Reviews Microbiology|language=en|volume=10|issue=12 | pages = 799|doi=10.1038/nrmicro2928|issn=1740-1534}}</ref><ref name="transfusion">{{Cite web | url = https://transfusionnews.com/2012/10/05/multicenter-study-finds-no-correlation-between-chronic-fatigue-syndrome-and-xmrv/ | title = Multicenter Study Finds No Correlation between Chronic Fatigue Syndrome and XMRV|website=transfusionnews.com|access-date=2019-02-13}}</ref> but many blood donation bans remain.<ref name="Wilson2014"/> The US American Red Cross no longer has statements barring transfusions or transplants for CFS,<ref name="redcross">{{Cite web | url = https://www.redcrossblood.org/faq.html#eligibility-health|access-date=2019-02-13 | title = Frequently Asked Questions | date = | last = | first = | authorlink = |archive-url=|archive-date=|website=American Red Cross|quote=Your search for "Chronic fatigue syndrome" returned no results.}}</ref> but patients are expected to be in "good health" which would exclude most.<ref name="redcross"/> The American Association of Blood Banks advises to either accept or defer ME/CFS donors based on "clinical judgment of the donor's health status".<ref name="AABBOct2012">{{Cite web | last = American Association of Blood Banks | url = https://www.aabb.org/docs/default-source/default-document-library/regulatory/eid/xmrvfactsheet.pdf?sfvrsn=cd162fa3_2 | date = October 2012 | title = Xenotropic Murine Leukemia Virus-Related Virus (XMRV) and other Polytropic Murine Leukemia Viruses (pMLV)|pages = 3 |quote=An updated AABB Association Bulletin #12-05 (November 2012) states that individual collectors of blood and cellular therapy products should accept or defer donors with a history of CFS based on their clinical judgment of the donor's health status.|access-date=2022-05-25}}</ref> Patient charities discourage ME/CFS patients from donating blood,<ref name="MassBlood2015">{{Cite web | url = https://www.massmecfs.org/research/recent-research/19-xmrv/237-aabbs-recommendation-on-cfidsme-and-blood-donation | title = AABB's recommendation on ME/CFS and blood donation | date = Nov 25, 2015 |website=[[Massachusetts ME/CFS & FM Association]]|access-date=2022-05-25}}</ref> == Mini-Docs == <embedvideo service="youtube" dimensions="400" alignment="right" container="frame" description="By Jen Brea/TED (2016)">https://www.youtube.com/watch?v=Fb3yp4uJhq0</embedvideo> [[What happens when you have a disease doctors can't diagnose - TED Talk (2016)|''What happens when you have a disease doctors can't diagnose'']] By [[Jennifer Brea|Jen Brea]]/TED Five years ago, TED Fellow Jen Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her illness, whose root causes and physical effects we don't fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat.<ref>{{Cite web|url=https://www.youtube.com/watch?v=Fb3yp4uJhq0 | title = What happens when you have a disease doctors can't diagnose | date = Jan 17, 2017|access-date=|website=YouTube | last = Brea | first=Jennifer | authorlink=Jennifer Brea|archive-url=|archive-date=|publisher=TED}}</ref><ref>{{Cite web|url=https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose | title = What happens when you have a disease doctors can't diagnose | date = Jun 2016|access-date=|website=TED.com|archive-url=|archive-date=}}</ref> <embedvideo service="youtube" dimensions="400" alignment="right" container="frame" description="By Veronica Weber/Palo Alto Online (2015)">https://www.youtube.com/watch?v=9_HwOUiImvw</embedvideo> [[Invisible Illness - Stories of Chronic Fatigue Syndrome|''Invisible Illness - Stories of Chronic Fatigue Syndrome'']] By Veronica Weber/Palo Alto Online This mini documentary reveals 3 stories of people who have been impacted by [[Chronic Fatigue Syndrome]] - a little known disease that affects roughly 836,000-2.5 million people in the U.S. and receives little research funding. They share emotions of treating loved ones with the disease, their frustrations of being ignored by members of society and the healthcare industry and express hopes of treatment and research. Video by Veronica Weber/Palo Alto Online<ref>{{Cite web|url=https://www.youtube.com/watch?v=9_HwOUiImvw | title = Invisible Illness - Stories of Chronic Fatigue Syndrome | date = Jul 10, 2015 |access-date=|website=YouTube | last = Weber | first = Veronica | authorlink=|archive-url=|archive-date=|publisher=Palo Alto Online}}</ref> <embedvideo service="youtube" dimensions="400" alignment="right" container="frame" description="By Dr. David Kaufman/Unrest (2018)">https://www.youtube.com/watch?v=RC9TjgE_PlU</embedvideo> ''Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome'' By Dr. [[David Kaufman]]/[[Unrest|''Unrest'']] This video on the diagnosis and management of myalgic encephalomyelitis and chronic fatigue syndrome is '''part of the Unrest Continuing Education module''', made available through the American Medical Women's Association and Indiana University School of Medicine, and in partnership with #MEAction. US medical providers can visit: https://www.unrest.film/cme to register to watch [[Unrest]] online for free and receive Continuing Education credit.<ref>{{Cite web|url=https://www.youtube.com/watch?v=RC9TjgE_PlU | title = Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome | date = Oct 16, 2018|access-date=|website=YouTube | last = Kaufman | first = David | authorlink=David Kaufman|archive-url=|archive-date=|publisher=Unrest Film}}</ref> ==Epidemiology == In the [[United States]], 836,000 - 2.5 million people suffer from ME/CFS. "The total economic costs of ME/CFS are estimated at $17 to $24 billion annually."<ref name="guide" /> Some CFS patients can work with [https://www.dol.gov/general/topic/disability/jobaccommodations job accommodations] but between 1 in 3 and 1 in 2 patients become unable to work and [[Disability|many rely on SSDI/SSI]].<ref>[http://phoenixrising.me/living-i-the-basics/disability-chronic-fatigue-syndrome-mecfs Disability for CFS - Phoenix Rising]</ref><ref>[http://www.womenshealth.gov/publications/our-publications/fact-sheet/chronic-fatigue-syndrome.html CFS - Womenshealth.gov]</ref><ref>[https://www.masscfids.org/job-accommodations Job Accommodations - MASS CFIDS]</ref> *[[Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome|Epidemiology]] :All races and cultures are afflicted with ME/CFS.<ref>[http://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-9-91 Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care - Bio-Med Central - July 2011]</ref><ref name="epidemiology">{{Cite web | title = Epidemiology {{!}} Presentation and Clinical Course {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)|url=https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/epidemiology.html|website=[[Centers for Disease Control and Prevention]] | date = 2018-11-08|access-date=2019-01-29|language=en-us}}</ref> Children and adolescents are also diagnosed.<ref>{{Cite web | title = ME/CFS in Children {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)|url=https://www.cdc.gov/me-cfs/me-cfs-children/index.html|website=[[Centers for Disease Control and Prevention]] | date = 2019-01-18|access-date=2019-01-29|language=en-us}}</ref><ref>{{Cite web | title = Pediatric ME/CFS Home Page|url=https://www.massmecfs.org/pediatric-me-cfs-home-page|website=massmecfs.org|access-date=2019-01-29}}</ref> *[[Female predominant diseases]] :Like many [[Autoimmune disease|autoimmune]] and [[Neuro-immune disease|neuro-immune]] diseases where mostly women are afflicted,<ref>[http://www.rightdiagnosis.com/artic/fact_sheet_autoimmune_disease_in_women_nwhic.htm Fact Sheet Autoimmune Disease in Women: NWHIC - Right Diagnosis - Aug 2015]</ref> the ME/CFS female/male patient ratio per Capelli et al. is 6:1<ref>{{Cite journal | title = Chronic fatigue syndrome/myalgic encephalomyelitis: an update|url=https://www.ncbi.nlm.nih.gov/pubmed/21244747|journal=International Journal of Immunopathology and Pharmacology | date = Oct 2010|issn=0394-6320|pmid=21244747 | pages = 981–989|volume=23|issue=4|doi=10.1177/039463201002300402 | first = E. | last=Capelli | first2 = R. | last2 = Zola | first3 = L. | last3 = Lorusso | first4 = L. | last4 = Venturini | first5 = F. | last5 = Sardi | first6 = G. | last6 = Ricevuti}}</ref> while the CDC states 4:1.<ref name="epidemiology"/> *[[Pediatric myalgic encephalomyelitis and chronic fatigue syndrome|Pediatric]] :Pediatric ME/CFS is defined by the CDC<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/me-cfs-children/factsheet-healthcare-professional.html | title = Pediatric ME/CFS: Fact Sheet for Healthcare Professionals {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2017-10-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-10-13}}</ref> and the [[National Academy of Medicine]] (NAM)<ref name="IOM2015-Ch6">{{Cite book | last = Institute of Medicine | first = | date = 2015-03-16 | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|url=https://www.nap.edu/read/19012/chapter/8|publisher=The National Academies Press|language=en|chapter=Pediatric ME/CFS Chapter 6 | page = 181|doi=10.17226/19012|quote=}}</ref> although it is usually diagnosed in adults.<ref name="whatis"/> "Children below the age of 8 or 9 do not have the symptom pattern of adolescents past puberty. If the onset of the disease occurs during adolescence, the most common time of onset, the pattern is similar to that of adults."<ref>{{Cite news | url=https://www.omf.ngo/2016/06/25/mecfs-in-children-by-dr-david-s-bell-2/ | title = ME/CFS in Children - by David S. Bell, MD|website = Open Medicine Foundation | date = 2016-06-25|access-date=2018-08-11|language=en-US}}</ref> The prognosis in adolescents is considered to be better than in adults.<ref name="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="pediatricprimer"/> Children are diagnosed with ME/CFS at three months of illness under SEID and CCC and ME is diagnosed immediately under ICC.<ref>{{Cite web|url=https://www.masscfids.org/pediatric-me-cfs-links | title = Pediatric ME/CFS links|website=[[Massachusetts ME/CFS & FM Association]]|language=en-GB|access-date=2018-08-11}}</ref><ref name="guide" /><ref name="Carruthers, 2003" /><ref name="ICC" /> *[[Prevalence of myalgic encephalomyelitis and chronic fatigue syndrome|Prevalence]] :"Worldwide, there may be as many as 17 – 24 million people with ME/CFS."<ref>{{Cite web|url=https://ammes.org/how-many-people-have-mecfs/ | title = How Many People Have ME/CFS? – American ME and CFS Society|language=en-US|access-date=2019-01-31}}</ref> 25% of ME/CFS patients are [[Severe and very severe ME|housebound or bedbound]] at some point in their illness.<ref name="facts">{{Cite web|url=https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf | title = Myalgic Encelphalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts | last = | first = | authorlink = | date = 2015 | website = nationalacademies.org|archive-url=|archive-date=|access-date=}}</ref><ref name="IOM2015MECFS">{{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>{{Rp|32}} and 90% of people with ME/CFS are undiagnosed.<ref name="whatis"/> *[[Prognosis for myalgic encephalomyelitis and chronic fatigue syndrome|Prognosis]] :The prognosis for a patient diagnosed with ME/CFS isconsidered 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=20–31|doi=10.1093/occmed/kqi013|issn=0962-7480|pmid=15699087}}</ref> 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=223–233|issn=1460-2725|pmid=9093600}}</ref> == Symptoms == [[List of symptoms in ME CFS|Symptom presentation varies enormously]] between individuals. Symptom presentation also varies within individuals, as individuals often report that symptoms change over time (increasing or decreasing) and new symptoms may appear while others disappear.<ref name="symptoms"/> There are many symptoms which people with ME/CFS experience, though those listed below are the core symptoms found in all patients. [[File:Cfs woman sketch.jpg|435x435px|thumb|[[Post-exertional malaise]] (PEM) is a [[post-exertional malaise|worsening of ME/CFS symptoms]] after minimal [[Exertion#Exertion in ME.2FCFS|physical, mental or emotional exertion]]. Worsening symptoms may include [[chronic fatigue]], [[flu-like symptoms]], [[brain fog]] or [[cognitive dysfunction]], [[word-finding problems]], [[unrefreshing sleep]], [[headache]]s and [[migraine]]s, [[chronic pain]], [[Myalgia|muscle pain]] and [[muscle fatigability]], [[orthostatic intolerance]], [[neurally mediated hypotension]], or [[Postural orthostatic tachycardia syndrome|POTS]], and more. The [[Delayed onset of post-exertional symptoms|onset of PEM can be delayed 24-72 hours]] and depending on ME/CFS severity can last days, weeks, or even months.]] [[File:Rosa SEID.JPG|400px|thumb|left|Rosa age 25 in 1986 and mildly ill with [[Systemic Exertion Intolerance Disease#Diagnostic criteria|ME/CFS's core symptoms]]. In 2015, the new CDC (SEID) criteria were released. Rosa read about [[Post-exertional malaise|PEM]] and how it is delayed and makes [[List of symptoms in ME CFS|ME/CFS symptoms]] like [[Chronic fatigue|CF]], [[Orthostatic intolerance|OI]], and [[Cognitive dysfunction|cognition]] worse. Her life since [[Pediatric myalgic encephalomyelitis/chronic fatigue syndrome|age 17]] fell into place as she never connected her worsening symptoms with increased [[Exertion#Exertion in ME.2FCFS|physical, mental, or emotional exertion]] 24-72 hours prior. She believes not understanding PEM made her illness worsen over the years and is now disabled meeting the [[Canadian Consensus Criteria|CCC]] with PEM.]] [[File:Brian vastag.png|thumb|left|[[Brian Vastag]] is an American and award-winning journalist and an ME/CFS patient that won a disability case against Prudential, proving that PEM is a severe symptom that keeps him from gainful employment]] [[File:PEM1.JPG|300px|thumb|right|I think [https://twitter.com/hashtag/twofacesofme?f=tweets&vertical=default&src=hash #TwoFacesofME] is a really important hashtag. We’re only out and about at our best, and our (more frequent) worst often remains hidden. I’m convinced it’s why #[[ME/CFS|MEcfs]] research funding is so low - the problem isn’t visible enough. I’m seriously ill in both these photos.<ref>{{Cite web|url=https://twitter.com/JackCroxall/status/1085900441328803840 | title = I think #TwoFacesofME is a really important hashtag. We're only out and about at our best, and our (more frequent) worst often remains hidden. I'm convinced it's why #MEcfs research funding is so low - the problem isn't visible enough. I'm seriously ill in both these photos.pic.twitter.com/hNjK5140kv | last = Croxall | first = Jack | date = 2019-01-17 | website = @JackCroxall|language=en|access-date=2019-01-17}}</ref>]] [[File:PEM4.JPG|300px|thumb|right|First photo, me in my [[Severe and very severe ME|wheelchair on a rare trip out]]. Second photo, the inevitable crash. Eye half closed, [[Speech difficulties|slurred speech]], [[Dizziness|dizzy]], weak, etc. #TwoFacesofME<ref>{{Cite web|url=https://twitter.com/hopeforMEyet/status/1085909800766980096 | title = First photo, me in my wheelchair on a rare trip out. Second photo, the inevitable crash. Eye half closed, slurred speech, dizzy, weak, etc. #TwoFacesofMEpic.twitter.com/P2OPnnpQvF | last = Karen | date = 2019-01-17 | website = @hopeforMEyet|language=en|access-date=2019-01-17}}</ref>]] [[File:PEM5.JPG|300px|thumb|right|#TwoFacesofME First photo from the morning, the other one from the afternoon ( when I failed to nap 30-60 minutes). I am Not [[Severe and very severe ME|severely ill]], and my life is ok, even [so] I wish that one day science will help me & all the #MeCfs sufferers around the globe.<ref>{{Cite web | title = #TwoFacesofME First photo from the morning, the other one from the afternoon ( when I failed to nap 30-60 minutes). I am Not severely ill, and my life is ok, even do I wish that one day science will help me & all the #MeCfs sufferers around the globe.pic.twitter.com/wmhfHcfP0p | url =https://twitter.com/Authorportrait/status/1085815918846832640 | website = @Authorportrait | date = 2019-01-17|access-date=2019-01-17|language=en | first = Henry | last = Köhler}}</ref>]] *[[Post-exertional malaise]] (PEM) is the hallmark symptom of ME/CFS. After physical mental or emotional [[exertion]] (which for some patients can be a shower or making out a to-do list, others grocery shopping, socializing or reading a news article, while some just walking to the mailbox, getting to the doctor or mentally following a T.V. program)<ref name="symptoms"/><ref name="what-is">{{Cite web|url=https://www.omf.ngo/what-is-mecfs/ | title = What is ME/CFS? | last = | first = | date = |archive-url=|archive-date=|url-status=|access-date= | authorlink = |website=[[Open Medicine Foundation]]}}</ref> there is a payback or [[Marked, rapid physical and/or cognitive fatigability in response to exertion|worsening]] [[List of symptoms in ME CFS|ME/CFS symptoms]] which can be [[Delayed onset of post-exertional symptoms|delayed 24-72 hours]], or sometimes more<ref name="symptoms/><ref name="Lindheimer2017">{{Cite journal | last = Lindheimer | first=Jacob B. | last2 = Meyer | first2 = Jacob D. | last3 = Stegner | first3 = Aaron J. | last4 = Dougherty | first4 = Ryan J. | last5 = Van Riper | first5 = Stephanie M. | last6 = Shields | first6 = Morgan | last7 = Reisner | first7 = Amanda | last8 = Shukla | first8 = Sanjay K. | last9 = Light | first9 = Alan R. | date = 2017-04-03 | title = Symptom variability following acute exercise in myalgic encephalomyelitis/chronic fatigue syndrome: a perspective on measuring post-exertion malaise|url=https://www.tandfonline.com/doi/full/10.1080/21641846.2017.1321166|journal = Fatigue: Biomedicine, Health & Behavior |language=en|volume=5|issue=2 | pages = 69–88|doi=10.1080/21641846.2017.1321166|issn=2164-1846}}</ref><ref name="Yoshiuchi2007">{{Cite journal | last = Yoshiuchi | first = Kazuhiro | last2 = Cook | first2 = Dane B. | last3 = Ohashi | first3 = Kyoko | last4 = Kumano | first4 = Hiroaki | last5 = Kuboki | first5 = Tomifusa | last6 = Yamamoto | first6 = Yoshiharu | last7 = Natelson | first7 = Benjamin H. | date = 2007-12-05 | title = A real-time assessment of the effect of exercise in chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/17655887|journal=Physiology & Behavior|volume=92|issue=5 | pages = 963–968|doi=10.1016/j.physbeh.2007.07.001|issn=0031-9384|pmc=2170105|pmid=17655887}}</ref> and can last 24 hours and even days, weeks, or months.<ref name="VanNess2010">{{Cite journal | last = VanNess | first = J. Mark | last2 = Stevens | first2 = Staci R. | last3 = Bateman | first3 = Lucinda | last4 = Stiles | first4 = Travis L. | last5 = Snell | first5 = Christopher R. | date = Feb 2010 | title = Postexertional malaise in women with chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/20095909|journal=Journal of Women's Health (2002)|volume=19|issue=2|pages=239–244|doi=10.1089/jwh.2009.1507|issn=1931-843X|pmid=20095909}}</ref><ref>[https://www.fda.gov/downloads/forindustry/userfees/prescriptiondruguserfee/ucm368806.pdf The Voice of the Patient.] A series of reports from the U.S. Food and Drug Administration’s (FDA's) Patient-Focused Drug Development Initiative. September 2013</ref> The patient will experience even greater fatigue as well as exasperate the [[flu-like symptoms]] and body [[pain]]. Every patient experiences different symptoms and symptom severity from different activities and exertion output according to how sick he or she is with the disease.<ref name="whatis" /><ref name="webmd" /> Regarding PEM the [[CFIDS Association of America]] states: <blockquote>This is a term which describes a symptom in which exercise or exertion can bring on [[malaise]] (illness). In the case of people with ME/CFS, malaise often occurs during a period some 24-72 hours after exertion. For example, in some cases, a short walk can worsen ME/CFS symptoms two days later. This lack of understanding about the delayed onset of symptoms has, in the past, made it harder to test for ME/CFS. Follow up tests, taken less than 24 hours after an initial exercise test, may show that the patient can still perform activities at the same level (before post exertional malaise has a chance to take hold).<ref>[http://www.whathealth.com/awareness/event/internationalcfsmeawarenessday.html What Health - International CFS/ME Awareness Day 2017 - CFIDS Association of America]</ref></blockquote> * [[chronic fatigue]] *[[cognitive dysfunction]] *[[orthostatic intolerance]] (OI) such as [[postural orthostatic tachycardia syndrome]] (POTS) or [[neurally mediated hypotension]] (NMH) *[[unrefreshing sleep]]/[[sleep dysfunction|sleep disturbance]]<ref name="DiagnosticAlgorithm" /><ref name="guide" /> ==== Other possible symptoms ==== *[[chronic pain]] *[[immune system]] *[[:Category:Neurological_signs_and_symptoms|neurological signs and symptoms]] See also: [[neuroinflammation]] *[[List of symptoms in ME/CFS]] === Comorbids === *[[fibromyalgia]] (FMS) *[[irritable bowel syndrome]] (IBS) *[[multiple chemical sensitivity]] (MCS) *[[temporomandibular joint disorder]] (TMJ)<ref>[http://solvecfs.org/what-is-mecfs/ What is ME/CFS? - Solve ME/CFS Initiative]</ref> === Government guides on symptoms === '''US Government guides on symptoms''' *[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf Clinicians Guide] via The [[Institute of Medicine report]] *[https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html CDC - ME/CFS Symptoms] '''Canada guides on symptoms''' *[http://linkis.com/org/tUheh Alberta Clinicians Guide] == Tests == * [[Natural killer cell]] (NKC) Blood Test * Sleep study for [[sleep apnea]], [[Restless legs syndrome|restless leg syndrome]], and other sleep disturbances. * [[Tilt table test]] for [[Orthostatic intolerance|OI]] or [[Postural orthostatic tachycardia syndrome|POTS]]. ==Drugs, treatments, and therapies == There are currently no [[U.S. Food and Drug Administration|Food and Drug Administration]] (FDA) approved treatments for ME/CFS. Treatments consist mostly of symptom management, rather than treatment of the underlying cause of the disease, which is not yet understood. There are many [[:Category:Potential_treatments|potential treatments]], though their evidence base is limited, as most research into treatments has gone into unsuccessful psychological approaches to treatment. ===Drugs=== [[File:Ampligen.jpg|200px|thumb|right|Ampligen]] Two treatments that have garnered much attention are [[Ampligen]], produced by [[AIM ImmunoTech]] (formerly Hemispherx Biopharma), and [[Rituximab]]. Many people have reported enormous improvements from Ampligen, and a few recovered but relapsed when they stopped taking it.<ref name="TownCFS">{{Cite web|url=https://www.newyorker.com/culture/personal-history/a-town-for-people-with-chronic-fatigue | title = A Town for People with Chronic Fatigue Syndrome|website=New Yorker | date = Sep 3, 2019 | first = Mike | last = Mariani|access-date=2022-04-13}}</ref> Attempts to obtain FDA approval for Ampligen in the US have failed, but it is available to some people on [[compassionate use]].<ref name="experimental">{{Cite web|url=https://ammes.org/experimental-treatments/ | title = Experimental treatments | last = | first = | date = |website=[[American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society]]|language=en-US|archive-url=|archive-date=|access-date=2021-03-18}}</ref> [[Argentina]] approved the use of Ampligen for [[Severe and very severe ME|severe ME/CFS]] in 2016.<ref>{{Cite news | url=http://www.globenewswire.com/news-release/2016/08/23/866212/0/en/Hemispherx-Biopharma-Announces-Major-Breakthrough-Approval-for-Commercial-Sale-of-Rintatolimod-U-S-Tradename-Ampligen-to-Treat-Severe-Cases-of-Myalgic-Encephalomyelitis-Chronic-Fat.html | title = Hemispherx Biopharma Announces Major Breakthrough: Approval for Commercial Sale of Rintatolimod (U.S. Tradename: Ampligen®) to Treat Severe Cases of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in the Argentine Republic | last = Hemispherx Biopharma, Inc. | date = Aug 23, 2016|work=GlobeNewswire News Room|access-date=2018-08-13|archive-url=|archive-date=|url-status=|language=en-US}}</ref><ref>{{Cite news | url=http://cdn2.hubspot.net/hubfs/150154/docs/Hemispherx-Executive-Informational-Overview-11-27-16.pdf?__hssc=75734090.1.1482434979170&__hstc=75734090.d484bcfed76166643c7e8f36a0c76637.1482434979170.1482434979170.1482434979170.1&__hsfp=4187238277&hsCtaTracking=afde00a7-b0f3-44d3-b072-5febf480affb%7Cb8ddd437-9009-4bb9-a8fe-65a376fff33f | title = Hemispherx Biopharma, Inc. Executive Informational Overview | last = | first = | date = Nov 27, 2016|work=Crystal Research Associates|access-date=|archive-url=|archive-date=|url-status=|format=PDF}}</ref> Also in 2016, it was made available on a limited basis in Europe.<ref>{{Cite web|url=https://www.bizjournals.com/philadelphia/news/2016/07/25/hemispherx-ships-ampligen-for-european-chronic.html | title = Hemispherx ships Ampligen for European chronic fatigue syndrome program | last = George | first = John | date = Jul 25, 2016 | website = bizjournals.com|archive-url=|archive-date=|url-status=|access-date=2018-08-13}}</ref> In July 2018, Hemispherx Biopharma, Inc announced the expansion of its [[compassionate use|Treatment Protocol/Expanded Access Programs]] (compassionate use) for ME/CFS in the United States, known as '''AMP-511''', to new patients.<ref>[http://www.4-traders.com/HEMISPHERX-BIOPHARMA-INC-31148494/news/Hemispherx-BioPharma-Opens-FDA-Approved-Reimbursement-Based-Expanded-Access-Treatment-Program-for-26862569/ Hemispherx BioPharma : Opens FDA-Approved Reimbursement Based Expanded Access Treatment Program for ME/CFS to New Enrollees - 4 Traders]</ref> AMP-511 "will allow treatment of up to 100 [[ME/CFS]] patients at any one time at approved clinical infusion therapy sites."<ref>{{Cite web|url=https://finance.yahoo.com/news/hemispherx-biopharma-inc-announces-advancement-133000883.html | title = Hemispherx Biopharma Inc. Announces Advancement in Expanded Access Program for Ampligen in the Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | last = | first = | authorlink = | date = Jan 2, 2019 | website = finance.yahoo.com|publisher=GlobeNewswire|language=en-US|archive-url=|archive-date=|url-status=|access-date=2019-02-10}}</ref> [[Rituximab]], a lymphoma drug, had shown promising results in initial trials in Norway,<ref>{{Cite journal | last = Fluge | first = Øystein | authorlink = Øystein Fluge | last2 = Risa | first2 = Kristin | authorlink2 = | last3 = Lunde | first3 = Sigrid | author-link3 = | last4 = Alme | first4 = Kine | author-link4 = | last5 = Rekeland | first5 = Ingrid Gurvin | authorlink5 = | last6 = Sapkota | first6 = Dipak | authorlink6 = | last7 = Kristoffersen | first7 = Einar Kleboe | last8 = Sørland | first8 = Kari | last9 = Bruland | first9 = Ove | date = 2015-07-01 | title = B-Lymphocyte Depletion in Myalgic Encephalopathy/ Chronic Fatigue Syndrome. An Open-Label Phase II Study with Rituximab Maintenance Treatment|url=http://dx.plos.org/10.1371/journal.pone.0129898|journal=PLOS ONE|language=en|volume=10|issue=7| pages = e0129898|doi=10.1371/journal.pone.0129898|issn=1932-6203|pmc=4488509|pmid=26132314|access-date=|quote=|via=}}</ref> and there were groups crowdsourcing funding for further trials in other countries. In 2017, Drs. [[Øystein Fluge]] and [[Olav Mella]] announced that their Rituximab trial had failed. They stated that they would focus their efforts on attempting to identify a subgroup of ME/CFS patients with an immune profile that would be responsive to Rituximab.<ref>{{Cite web|url=https://www.simmaronresearch.com/blog/2017/11/norwegian-rituximab-chronic-fatigue-syndrome-mecfs-trial-fails | title = Norwegian Rituximab Chronic Fatigue Syndrome (ME/CFS) Trial Fails|website=Simmaron Research|language=en-US|access-date=2021-11-21}}</ref> A phase III trial published in 2019 showed Rituximab does not improve ME/CFS.<ref name="phase3-2019">{{Cite journal | last = Fluge | first = Øystein | last2 = Rekeland | first2 = Ingrid G. | last3 = Lien | first3 = Katarina | last4 = Thürmer | first4 = Hanne | last5 = Borchgrevink | first5 = Petter C. | last6 = Schäfer | first6 = Christoph | last7 = Sørland | first7 = Kari | last8 = Aßmus | first8 = Jörg | last9 = Ktoridou-Valen | first9 = Irini | date = 2019-04-02 | title = B-Lymphocyte Depletion in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Randomized, Double-Blind, Placebo-Controlled Trial|url=https://www.ncbi.nlm.nih.gov/pubmed/30934066|journal=Annals of Internal Medicine|doi=10.7326/M18-1451|issn=1539-3704|pmid=30934066}}</ref><br> [[Jarred Younger]] announced in March 2016 that he would be undertaking a trial of [[low dose naltrexone]] ([[LDN]]) in ME/CFS.<ref name="younger-research">{{Cite web | last = Younger | first=Jarred | authorlink = Jarred Younger | title = Research. Neuroinflammation Pain and Fatigue Laboratory|access-date= Nov 21, 2021|url=https://sites.uab.edu/younger/research/}}</ref> === Treating other conditions === Different forms of [[Orthostatic intolerance|OI]] are treated with beta-blockers (Metopropol), [[Fludrocortisone]] (Florinef), and [[Mestinon|Pyridostigmine]].<ref name="Carruthers, 2003"/> When treating other diseases, illnesses, and conditions, and ME/CFS comorbidities or overlapping conditions such as sleep difficulties, cognitive problems, pain, and other symptoms it is important to remember that patients are [[Medicine sensitivities|sensitive to medications]].<ref name="monitor">{{Cite web | title = Monitoring the Use of All Medicines and Supplements {{!}} Clinical Care of Patients {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)|url=https://www.cdc.gov/me-cfs/healthcare-providers/clinical-care-patients-mecfs/monitoring-medication.html|website=[[Centers for Disease Control and Prevention]] | date = 2018-11-08|access-date=2019-01-27|language=en-us}}</ref> The CDC advice to health care practitioners is to be aware that because all drugs can cause side effects, ME/CFS patient symptoms can worsen. "This is particularly true of any medication that acts on the [[central nervous system]], such as sedating medications: therapeutic benefits can often be achieved at lower-than-standard doses. Patients with ME/CFS might tolerate or need only a fraction of the usual recommended doses for medications. After initial management with lower dosing, one or more gradual increases may be considered as necessary and as tolerated by the patient."<ref name="monitor" /> For instance, tricyclic drugs can improve mood and help with sleep and pain. However, in some in can worsen OI.<ref name="monitor" /> ===Controversy=== [[File:J Brea TED.JPG|200px|thumb|right|[[Jen Brea|Jennifer Brea]] is an [[United States|American]] who was studying at Harvard; while on a trip to [[Kenya]] she became very ill with what would eventually be diagnosed as [[ME/CFS]]. Brea began experiencing [[Nervous system|neurological]] problems. Her neurologist diagnosed her with "conversion disorder" ([[hysteria]]). When walking home from his office, she collapsed. [[Severe and very severe ME|Jen then needed to use a wheelchair,]] keeping her legs up due to [[Postural orthostatic tachycardia syndrome|POTS]] as her blood pooled into her legs]]. Until recently psychiatry has taken an [[Psychologization|inappropriate lead]] and treatment path for a biological disease. In the [[United Kingdom|UK]], [[graded exercise therapy]] (GET) and [[cognitive behavioral therapy]] (CBT) were employed by ME Clinics until 2021. [[Exercise]] exacerbates symptoms and can further harm patients.<ref name="OxfordBrookesSurvey">{{Cite web|url = https://www.meassociation.org.uk/wp-content/uploads/NICE-Patient-Survey-Outcomes-CBT-and-GET-Final-Consolidated-Report-03.04.19.pdf| title = Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes. FINAL REPORT | last = Oxford Clinical Allied Technology and Trials Services Unit (OxCATTS)|location=Oxford Brookes University | date = Feb 27, 2019}}</ref><ref>[https://you.38degrees.org.uk/petitions/get-and-cbt-are-dangerous-treatments-for-me-patients GET and CBT are dangerous treatments for ME patients - Petition - 38 Degrees - By Michael Evison]</ref> [[Depression]] and [[anxiety]] drugs have been utilized, usually with poor results.<ref name="Carruthers, 2003" /><ref name="ICC2011primer">{{citation | last1 = Carruthers | first1 = BM | authorlink1 = 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 | authorlink6 = Terry Mitchell | last7 = Staines | first7 = D | authorlink7 = Donald Staines | last8 = Powles | first8 = ACP | authorlink8 = A C Peter Powles | last9 = Speight | first9 = N | authorlink9 = Nigel Speight | last10 = Vallings | first10 = R | authorlink10 = Rosamund Vallings | last11 = Bateman | first11 = L | authorlink11 = Lucinda Bateman | last12 = Bell | first12 = DS | authorlink12 = David Bell | last13 = Carlo-Stella | first13 = N | authorlink13 = Nicoletta Carlo-Stella | last14 = Chia | first14 = J | authorlink14 = John Chia | last15 = Darragh | first15 = A | authorlink15 = Austin Darragh | last16 = Gerken | first16 = A | authorlink16 = Anne Gerken | last17 = Jo | first17 = D | authorlink17 = Daehyun Jo | last18 = Lewis | first18 = DP | authorlink18 = Donald Lewis | last19 = Light | first19 = AR | authorlink19 = 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> Treating a biological disease as a mental illness is not cost-effective. The drugs are expensive and [[biomedical research]] is not pursued. People struck down and disabled with ME/CFS are labeled with a mental health issue; disability insurance, having clauses excluding a mental health illness/disease, stop any payment or shorten the payout time-frame.<ref>[http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really? - By: David Tuller Virology Blog]</ref><ref>[https://www.psychologytoday.com/blog/turning-straw-gold/201212/physical-illnesses-may-soon-be-labeled-mental-disorders Physical Illnesses May Soon Be Labeled “Mental Disorders” - Psychology Today - Toni Bernhard, J.D.]</ref><ref>[http://www.theguardian.com/society/2004/apr/28/equality.mentalhealth People with mental illness face widespread discrimination - The Guardian - David Batty]</ref> ====Graded exercise therapy & Cognitive behavioral therapy ==== [[File:Emma Shorter.JPG|400px|thumb|right|[[Emma Shorter]], is a citizen of [[Scotland]]. Here, she gives testimony before Parliament's Petitions Committee on [[graded exercise therapy|GET]] and how it put her in a wheelchair]]. Until 2021, [[graded exercise therapy|GET]] and [[Cognitive behavioral therapy|CBT]] were typically employed in the UK, [[Ireland]] and some parts of Europe through ME Clinics. They are highly controversial and not recommended by patients, patient advocates, and research organizations nor by many doctors or researchers outside of the UK.<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> Based on the flawed [[PACE trial]] which used the flawed [[Oxford criteria]] to diagnose and recruit patients, GET and CBT found its way into treating people with ME/CFS. [[Exercise]], especially GET, can harm an ME/CFS patient further.<ref name="OxfordBrookesSurvey"/> *[[Jennifer Brea]] walked home from her Neurologist's office and became [[severe and very severe ME|wheelchair-bound]]. *This is an experience of serious harm due to GET shared [https://twitter.com/TomKindlon/status/846425974052966400 by K. Miles, via Tom Kindlon on Twitter]. *[[Emma Shorter]] was able to walk a few minutes a day until GET put her in a wheelchair. *[[Doctor Speedy]] was also seriously harmed by GET. ===Claims of curative treatments=== Charlatans claim they can cure CFS (per the CDC "there is no cure"<ref name="treatments">{{Cite web|url=https://www.cdc.gov/me-cfs/treatment/index.html | title = Treatment {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | last = | first = | date = 2018-07-03 | website = [[Centers for Disease Control and Prevention]]|language=en-us|archive-url=|archive-date=|access-date=2021-11-22}}</ref>) when in reality they may be able to treat [[chronic fatigue]] (CF). ME/CFS patients experience an ongoing improper immune response and [[List of abnormal findings in chronic fatigue syndrome and myalgic encephalomyelitis|other medical abnormalities]] for at least 6 months straight with a reduction in activity with a specific symptom set for at least 50% of the time.<ref name="etiology"/><ref name="CDC-diagnosis">{{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 = 2018-07-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-09-07}}</ref><ref name="approach">{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/approach-to-diagnosis.html | title = Proposed Approach to ME/CFS Diagnosis in Children and Adults {{!}} Diagnosis {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2018-07-12 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-09-07}}</ref> Additionally, there have been media reports of some athletes diagnosed with CFS that recovered in a relatively short period of time after rest, supplementation, and diet changes,<ref name="Inews2017" /><ref name="Times2017" /><ref name="ABC2018" /><ref name="Times2019" /> these athletes may have had [[overtraining syndrome]],<ref name="spence">{{Cite web | last = Spence | first = Vance | authorlink = Vance Spence|website=Irish M.E. Association| title = Snippets {{!}} A presentation by MERGE Chairman Dr Vance Spence on 12 November 2005 at the Oak Tree Court Conference Centre, Coventry, at the invitation of the Warwickshire Network for ME | url = https://www.imet.ie/imet_website/snippets/7th_december_2005_snippets.html}}</ref> while some people with [[anemia]], [[allergy|allergies]], [[idiopathic chronic fatigue]] or [[:Category:Potential comorbidities|other fatiguing illnesses]] can be [[misdiagnosis of myalgic encephalomyelitis and chronic fatigue syndrome|misdiagnosed with CFS]].<ref name="Carruthers, 2003" /> === Working with government to move forward === Advocates met with senate staffers the week of March 16, 2016, and discussed research and drug development by the [[National Institutes of Health]] (NIH), the [[Centers for Disease Control and Prevention]] (CDC) reinstating and increasing funding and education based on [[Institute of Medicine report]] recommendations and the [[U.S. Department of Health and Human Services|Health and Human Services]] (HHS) funding to develop Centers of Excellence.<ref>[http://www.meaction.net/2016/03/16/meaction-meets-with-senate-staffers/ #MEAction meets with Senate staffers]</ref> #[[MEAction]] reports on this ongoing process. ====CDC Website updates==== *Jul 3, 2017, the CDC's Chronic Fatigue Syndrome page has been changed to [[ME/CFS|Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]] (ME/CFS) and [[graded exercise therapy|GET]] and [[cognitive behavioral therapy|CBT]] recommendations have been removed.<ref>[http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/ Trial By Error: The CDC Drops CBT/GET - Virology Blog]</ref><ref>[https://www.cdc.gov/me-cfs/index.html Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - CDC.gov]</ref> *Jul 12, 2018, the "Information for Healthcare Providers" tab and its sub-tabs were updated.<ref>[https://www.cdc.gov/me-cfs/healthcare-providers/index.html Information for Healthcare Providers - ME/CFS - CDC]</ref><ref>[https://www.cdc.gov/media/releases/2018/a0712-new-website-me-cfs.html New ME/CFS Web Content for Healthcare Providers - CDC - Jul 12, 2018]</ref> *Feb 25, 2019, Dr. [[Elizabeth Unger]], Chief of CDC's Chronic Viral Disease Branch (CVDB), that houses the ME/CFS program, in collaboration between ''Medscape'' and the CDC put out brief video and commentary page with links to the CDC's July 12th, 2018 updates for medical professionals: ''[https://www.medscape.com/viewarticle/908622?src=rss Chronic Fatigue Syndrome: It's Real, and We Can Do Better].''<ref>{{Cite web | title = Chronic Fatigue Syndrome: It's Real, and We Can Do Better |url =https://www.medscape.com/viewarticle/908622?src=rss| website = Medscape |access-date=2019-02-25 | date = Feb 25, 2019 | last = Unger | first=Elizabeth | authorlink = Elizabeth Unger | last2 = Medscape | first2 = | authorlink2 = |archive-url=|archive-date=|url-status=}}</ref> '''MEAction input''' *Jul 29, 2018, [https://www.meaction.net/2018/07/29/cdc-revises-its-information-on-me/ CDC Revises its Information on ME] #MEAction report on the CDC July 2017 and July 2018 website updates. Recommendations for the CDC's ME/CFS page have been created from patient feedback on the updates as well as asking for further patient input. == Recommended viewing == ==== Documentary ==== '''Films''' *''[[Forgotten Plague]]'' is a US documentary about [[Ryan Prior]], an afflicted journalist who investigates the disease and its history and why the CDC has left millions sidelined from life; available for [http://www.forgottenplague.com/ streaming and DVD ''purchase'']. (2015) [[File:Forgotten Plague.jpeg|200px|thumb|center]] *[[Unrest|''Unrest'']] is a US documentary film that aired on PBS's ''Independent Lens'' in 2018 and is available for [https://www.unrest.film/watch/#digital streaming] and [https://www.unrest.film/store/ DVD purchase]. [[Jennifer Brea]], a person with [[myalgic encephalomyelitis|ME]], directs. (2017) [[File:Unrest.jpg|400px|thumb|center]] ==== Short film ==== *[[The Last Great Medical Cover Up]] is a [https://vimeo.com/143904110 UK short Film on Vimeo] with several patient interviews. (2015) ==== News media ==== *[[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]] TV report, South Africa (2017) ==== Talks and interviews ==== *Jennifer Brea is interviewed for the upcoming BRIC Flix on her ME/CFS disease experience and her 2017 documentary film [[Canary in a Coal Mine]] (now called Unrest) at [https://www.youtube.com/watch?v=zeIefNymFuw 5:30 and 10:20.] (2016) == Recommended reading == ====Government health organizations==== :'''US''' :[[Centers for Disease Control]] (CDC) :*[https://www.cdc.gov/me-cfs/me-cfs-children/factsheets.html ME/CFS in Children Fact Sheets] (2017) Fact Sheets for Healthcare Professionals, Parents/Guardians, Education Professionals :[[National Institutes of Health]] (NIH) :*[[Moving Toward Answers in ME/CFS - NIH Director's Blog (2017)]] :[[Institute of Medicine]] (IOM) :*[https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts] From the [[Institute of Medicine report]]. (2015) :*[https://www.nap.edu/resource/19012/MECFS_ReportBrief.pdf Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness] Report Brief on the Institute of Medicine report. (2015) ==== ME/CFS research foundations ==== :'''UK''' :[[Invest in ME]] :*[http://www.investinme.org/faqs.shtml Frequently Asked Questions] :'''US''' :[[Open Medicine Foundation]] (OMF) :*[http://www.openmedicinefoundation.org/what-is-mecfs/ What is ME/CFS?] ==== ME/CFS organizations ==== :'''Australia''' :[[Emerge Australia]] :*[https://emerge.org.au/about-mecfs/diagnosis/mecfs/ What is ME/CFS?] :'''UK''' :[[ME Association]] :*[http://www.meassociation.org.uk/about/what-is-mecfs/ What is ME/CFS?] :[[Tymes Trust]] (Pediatric) :*[http://www.tymestrust.org/pdfs/mecfsseid.pdf Pediatric ME, CFS, SEID for Families and their GPs] (2016) :'''US''' :[[Massachusetts CFIDS/ME & FM Association]] :*[https://www.masscfids.org/cfids-me-cfs About ME/CFS] :[[Solve ME/CFS]] :*[https://drive.google.com/file/d/0B6UlcglLsyp7WkgxbmdaWXVhbVU/view What, Exactly, is a Biomarker Anyway? And Why Don't We Have One for ME/CFS?] (2017) :*[http://solvecfs.org/what-is-mecfs/ Get the Facts about ME/CFS] (2016) :*[http://solvecfs.org/wp-content/uploads/2013/06/SMCI_MECFS_FactSheet.pdf What is ME/CFS?] (2013) :'''International''' :[[MEAction]] :*[http://www.meaction.net/wp-content/uploads/2015/10/ME-Facts-v2-1.pdf Facts about Myalgic Encephalomyelitis (ME) (Also called chronic fatigue syndrome or CFS)] (2015) :*[http://www.meaction.net/reports-and-fact-sheets/?utm_content=bufferc2125 Reports and Fact Sheets] (2015) ==== Other organizations ==== :*[https://rarediseases.org/ National Organization for Rare Disorders] (NORD) has a section for [https://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/ Myalgic Encephalomyelitis] ==== Other reading==== :*[http://thirdage.com/what-do-you-do-when-a-loved-one-becomes-chronically-ill/ What Do You Do When a Loved One Becomes Chronically Ill?] By Suzan Jackson ==History== === 1980's to present day === *''[[Osler's Web]] i''s a book by [[Hillary Johnson]] on the early history of CFS. *[[Thirty Years of Disdain|''Thirty Years of Disdain'']] by [[Mary Dimmock]] and Matthew Lazell-Fairman picks up on the ME/CFS history where Osler's Web leaves off. === Deaths of ME/CFS patients === *[[Causes of death]] *[[Suicide]] '''Death certificates with ME or CFS''' *[[Merryn Crofts]]' death is attributed to ME. *[[Sophia Mirza]]'s death is attributed to CFS. In the UK, United States, and Australia there are reports of loved ones who have [[Causes of death|died due to ME/CFS]].<ref name="officialdeath">[https://www.newscientist.com/article/dn9342-first-official-uk-death-from-chronic-fatigue-syndrome/</ref> === Disease names and acronyms around the world === The [[United States]] and [[Australia]] usually refer to the disease as CFS, (chronic fatigue syndrome). Many European countries, the [[United Kingdom]] and [[Ireland]] mostly use the name ME, (Myalgic Encephalomyelitis). Most countries, as well as doctors and researchers worldwide, will also use the acronym ME/CFS. ''See:'' [[Definitions of ME and CFS]].) The symptom [[chronic fatigue]] (CF) should not be used in place of the name [[chronic fatigue syndrome]] (CFS); this has been a source of confusion of CF the symptom and CFS the disease. CFS is a grossly misnamed disease whereas CF is a symptom of many diseases, illnesses and drug therapies.<ref>[http://chronicfatigue.about.com/od/whatischronicfatigue/a/cf_vs_cfs.htm?utm_content=bufferda812 Chronic Fatigue vs. Chronic Fatigue Syndrome - One's a Symptom, One's a Disease - About.com Health FMS/ME/CFS By Adrienne Dellwo]</ref><ref>[http://arthritis.about.com/od/fatigue/f/chronicfatigue.htm Chronic Fatigue Versus Chronic Fatigue Syndrome What's the Difference? - About.com Health FMS/ME/CFS - By Carol Eustice]</ref> Dr. [[Jarred Younger]] explains chronic fatigue and begins by stating "Fatigue is not a disease and it is not even a symptom. So fatigue is a alarm system and the most general alarm system the body has." [https://www.youtube.com/watch?v=wJB95m4FLa0 Webinar with Jarred Younger, Ph.D. (@6:04-7:54)] ==== Myalgic Encephalomyelitis (ME) ==== Although many similar diseases have occurred for centuries, in the 1920s - 1940s there were sporadic outbreaks around the world<ref>[[List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks|List of outbreaks]]</ref>, of both poliomyelitis, and what Dr. [[Melvin Ramsay]] called 'Benign Myalgic Encephalomyelitis' ('benign because it is disabling but not usually fatal). In 1969, the World Health Organisation included "Myalgic Encephalitis' in its 'International Classification of Diseases' (ICD), under the category 'Diseases of the Nervous System', code G93.3.<ref>[http://www.hfme.org/thewhoandme.htm The WHO and M.E. (in brief) - The Hummingbirds' Foundation for M.E.]</ref><ref>[http://www.meactionuk.org.uk/ME_CFS_TERMINOLOGY.pdf ME/CFS Terminology - By: Margaret Williams - April - 2009]</ref> ==== From ME to CFS ==== [[1984 Incline Village chronic fatigue syndrome outbreak|Incline Village]], Lake Tahoe, NV, US, experienced an outbreak during 1984-1985. The CDC were sent to investigate. Dr. [[Anthony Komaroff]] studied cases from the outbreak and eventually he and a body of clinicians settled on the name "Chronic Fatigue Syndrome".<ref>[https://www.masscfids.org/diagnosis Diagnosis of ME/CFS - What is a Syndrome]</ref> Dr. Komaroff discusses the name emerging in the documentary film Forgotten Plague. ==== From CFS to 'any unexplained fatigue' ==== Various groups invented new definitions, that required only 'medically unexplained fatigue' such as [[Reeves criteria]] and [[Oxford criteria]]. Fatigue is a common symptom in any population, with many different causes. These new definitions allowed some psychiatrists to claim that CFS could be 'cured' through exercise and positive thinking which has been promoted through the [[PACE trial]] and that this 'cure' also applied to people who are severely ill with Myalgic Encephalomyelitis.<ref>[https://www.ncbi.nlm.nih.gov/pubmed/19855350/ A review on cognitive behavioral therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based but also potentially harmful for many patients with ME/CFS.]</ref><ref>[http://www.meassociation.org.uk/2009/12/statements-of-concern-about-cbtget-provided-for-the-high-court-judicial-review/ Statements of concern about CBT/GET provided for the High Court judicial review - ME Association]</ref> ==== SEID name and diagnostic criteria ==== [[Systemic Exertion Intolerance Disease]] (SEID) is a diagnostic criteria proposed by the [[Institute of Medicine]] (IOM) in the [[Institute of Medicine report]]. This clinical criteria was developed for doctors in the United States to diagnose at 6 months instead of years or even decades. Doctors are encouraged to perform tests prior to six months, such as a [[Tilt table test]] or sleep study if symptoms require further investigation. Treating symptoms such as [[orthostatic intolerance]] or a sleep disorder can begin prior to the six months needed to diagnose.<ref name="IOM2015MECFS" /> === Different diagnostic criteria used worldwide === ==== Currently used ==== <div style="column-count:2;"> *[[Canadian Consensus Criteria]] (CCC) *[[Fukuda criteria]] (Sometimes referred to as CDC Criteria) *[[International Consensus Criteria]] (ICC) *[[Oxford criteria]] *[[Reeves criteria]] (Sometimes called [[Empirical definition]]) *[[SEID]] or IOM 2015 (Used by CDC on their [https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html ME/CFS Diagnostic Criteria for Healthcare providers] page.)<ref name="niceng206"/> </div> ==== Currently not in use ==== <div style="column-count:2;"> *[[Oxford definition]] *[[Holmes criteria]] *[[London criteria]] *[[Nightingale definition]] *[[NIOF]] *[[Ramsay definition]] </div> The different criteria used from one doctor to another and researcher to researcher results in confusion for doctors trying to diagnose, poor research and discord between patients, medical professionals, and charitable organizations. Adding to the confusion is a clinical criteria will at times be used in research and a research criteria used by a clinician to diagnose. Many US researchers will use Fukuda (using the PEM "option") and CCC in a single research project.<ref>[http://www.meaction.net/2016/03/18/study-says-scientists-must-agree-on-classifying-patients/ Study says scientists must agree on classifying patients - By: Sasha Nimmo - #MEAction]</ref> The [[NIH Post-Infectious ME/CFS Study]] will be using four: SEID, Fukuda, CCC and Reeves.<ref>[http://www.meaction.net/2016/02/09/positive-answers-to-initial-questions-re-nih-clinical-center-protocol/#comment-2067 Positive Answers to Initial Questions re NIH Clinical Center Protocol - #MEAction - Comments Section - "Polly"]</ref> The ME/CFS community wanted to participate in this study's design.<ref>[https://my.meaction.net/petitions/nih-put-me-cfs-patients-at-heart-of-research-design-process NIH: Put ME/CFS patients at heart of research design process - Petition - #MEAction]</ref><ref>[https://my.meaction.net/petitions/keep-psychiatry-out-of-nih-study-on-me-cfs PETITION - Keep Psychiatry Out of NIH Study on ME/CFS - #MEAction - By: Mary Schweitzer]</ref> ==Notable studies== *2019, [[Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy (2019) Mueller, et al|Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy]]<ref name="Mueller2019">{{Cite journal|url=https://link.springer.com/epdf/10.1007/s11682-018-0029-4 | title = Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy | last = Mueller | first = Christina | authorlink= | last2 = Lin | first2 = Joanne | authorlink2 = | date = 2019 | journal=Brain Imaging and Behavior|volume=14|issue= | pages = 562–572|doi=10.1007/s11682-018-0029-4|archive-url=|archive-date=|url-status=|access-date=2019-01-17 | first3 = Sulaiman | last3 = Sheriff | first4 = Andrew | last4 = Maudsley| last5 =Younger | first5 = Jarred | authorlink5 = Jarred Younger}}</ref> **2018, [https://www.youtube.com/watch?v=rxdzaWD5wfU ME/CFS Involves Brain Inflammation: Results from a Ramsay Pilot Study]<ref>{{Cite web|url=https://www.youtube.com/watch?v=rxdzaWD5wfU | title = ME/CFS Involves Brain Inflammation: Results from a Ramsay Pilot Study | date = Dec 14, 2018|access-date=|website=YouTube | last = Younger | first=Jarred | authorlink=Jarred Younger|archive-url=|archive-date=|url-status=|publisher=SolveCFS}}</ref> (TALK) *2016, [[Metabolic features of chronic fatigue syndrome]] *2015, Daily cytokine fluctuations, driven by leptin, are associated with fatigue severity in chronic fatigue syndrome: Evidence of inflammatory pathology<ref name="stanfordleptin">{{Cite journal | last1 = Stringer | first1 = EA | last2 = Baker | first2 = KS | last3 = Carrol | first3 = IR | last4 = Montoya | first4 = JG | authorlink4 = Jose Montoya | last5 = Chu | first5 = L | authorlink5 = Lily Chu | last6 = Maeker | first6 = HT | last7 = Younger | first7 = JW | authorlink7 = Jarred Younger| title = Daily cytokine fluctuations, driven by leptin, are associated with fatigue severity in chronic fatigue syndrome: Evidence of inflammatory pathology | journal = J Transl Med.| date = Apr 9, 2013 | pmid = 23570606 | pmc = 3637529 | doi = 10.1186/1479-5876-11-93| url = http://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-11-93 }}</ref> - [https://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-11-93 (Full text)] *2015, Right Arcuate Fasciculus Abnormality in Chronic Fatigue Syndrome<ref name="Zeineh2015">{{Cite journal | last = Zeineh | first = Michael M. | author-link = Michael Zeineh | last2 = Kang | first2 = James | authorlink2 = | last3 = Atlas | first3 = Scott W. | authorlink3 = | last4 = Raman | first4 = Mira M. | authorlink4 = | last5 = Reiss | first5 = Allan L. | authorlink5 = | last6 = Norris | first6 = Jane L. | authorlink6 = Jane Norris | last7 = Valencia | first7 = Ian | authorlink7 = Ian Valencia | last8 = Montoya | first8 = Jose G. | authorlink8 = Jose Montoya | date = Feb 2015 | title = Right Arcuate Fasciculus Abnormality in Chronic Fatigue Syndrome|url=http://pubs.rsna.org/doi/10.1148/radiol.14141079|journal=Radiology|language=en|volume=274|issue=2 | pages = 517–526|doi=10.1148/radiol.14141079|issn=0033-8419|pmc=|pmid=|access-date=|quote=|via=}}</ref> <blockquote>Bilateral [[white matter]] atrophy is present in CFS. No differences in perfusion were noted. Right hemispheric increased FA may reflect degeneration of crossing fibers or strengthening of short-range fibers. Right anterior arcuate FA may serve as a [[Diagnostic biomarker|biomarker]] for CFS.</blockquote> :*2014, [[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014)|''Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder'' By David Tuller - New York Times: Well]] [[File:ME-CFS Brain Images.jpg|500px|thumb|center|Top scans: Healthy control patient; Bottom scans: chronic fatigue syndrome (CFS) patient. Image By: [[Michael Zeineh]]]] *[[List of enterovirus infection studies]] *[[Cytokine#Notable_studies|Cytokine ("Notable studies")]] == See also == *[[Severe and very severe ME]] *[[Pacing]] - a key way to manage ME/CFS *[[List of abnormal findings in chronic fatigue syndrome and myalgic encephalomyelitis|List of abnormal findings in ME/CFS]] *[[Fibromyalgia]] *[[Primer for family, friends and care providers]] *[[Primer for patients]] == Learn more == '''Potential treatments and research''' * [[Ampligen]] Used in [[Argentina]] for the treatment of [[Severe and very severe ME|severe ME/CFS]]. * [[Brain#Brain_imaging|Brain imaging]] * [[Natural killer cell]] * [[Vagus nerve infection hypothesis]] '''Guides and reports''' *[https://drive.google.com/file/d/1h_ZwdR4567k-mSoWahnC_id0F_fAA3Fb/view Caring for People with Myalgic Encephalomyelitis] (2018) Guide for Caretakers *"[[In the Expectation of Recovery]]" by the [[Citizen Network]] UK '''[[Patient mental health]]''' :Patients that had been deemed as suffering from mental health and not a biological illness: :*[[Karina Hansen]] is a young [[Denmark|Danish]] woman taken from her family for 3 1/2 years due to [[Per Fink]]'s insistence her ME symptoms were instead due to mental health issues. :*[[Sophia Mirza]] was taken forcibly from her home to a mental hospital only to be returned shortly after; she then died of ME. :*[[Ean Proctor]] was taken from his parents as a young boy and he was told his "parents were letting him die." He had become [[paralysis|paralyzed]] and mute and was let go in the deep end of a pool to make him swim and put on a scary theme park ride to scare him into moving. * ME/CFS is not [[depression]]. It causes a lack of energy, not a lack of desire to do activities.<ref name="Griffith, 2008">{{Cite journal | last1 = Griffith | first1 = J.P. | authorlink1 = | last2 = Zarrouf | first2 = F.A. | authorlink2 = | title = A Systematic Review of Chronic Fatigue Syndrome: Don’t Assume It’s Depression| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2292451/| pmc =2292451| journal = Primary Care Companion to The Journal of Clinical Psychiatry | volume = 10 | issue = 2 | page = 120–128| date = 2008 | pmid = 18458765 | doi = 10.4088/pcc.v10n0206 }}</ref><ref name="Hawk, 2006">{{Cite journal | last1 = Hawk | first1 = C | authorlink1 = | last2 = Jason | first2 = L | authorlink2 = Leonard Jason | last3 = Torres-Harding | first3 = S | authorlink3 = Susan Torres-Harding| title = Differential diagnosis of chronic fatigue syndrome and major depressive disorder | journal = International Journal of Behavioral Medicine | volume = 13 | issue = 3 | page = 244-51 | date = 2006 | pmid = 17078775 | doi =10.1207/s15327558ijbm1303_8 | url = http://www.healthrising.org/wp-content/uploads/2014/04/Hawk.-Jason.-Differential-Diagnosis-of-Chronic-Fatigue-Syndrome-and-Major-Depressive-Disorder.pdf}}</ref><ref>{{Cite web |url=http://drmyhill.co.uk/wiki/CFS_or_depression_-_what_are_the_differences | title = CFS or depression - what are the differences|website=Dr. Myhill | last = Myhill | first = Sarah | authorlink = Sarah Myhill|access-date=2021-11-10}}</ref> '''Outbreaks''' * [[1984 Incline Village chronic fatigue syndrome outbreak|Incline Village]] outbreak of 1984 began the research that led to the diagnostic construct [[Fukuda criteria|Fukuda]] and name of [[chronic fatigue syndrome]] * [[List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks|List of outbreaks]] == Other resources == *[[Verywell FMS/CFS]] Well written articles on ME/CFS and Fibromyalgia. == References == {{Reflist}} [[Category:Primers]]
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