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This '''Primer for patients''' will provide the information you need to better understand your personal diagnosis of [[Chronic Fatigue Syndrome]], (CFS) [[Myalgic encephalomyelitis]] (ME) or [[ME/CFS]] which can be very different with severity and symptoms from patient to patient.  
{{mbox|text= Editors: Edits to this Primer may require the same edits to the other [[:Category:Primers|Primers]].}}
This '''Primer for patients''' will provide the information you need to better understand your personal diagnosis of [[chronic fatigue syndrome]] (CFS), [[myalgic encephalomyelitis]] (ME), or [[ME/CFS]], which can be very different with severity and symptoms from patient to patient.  


This Primer can help you to educate yourself about your disease and discuss your very real symptoms with your doctor.  
<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>


Your disease is well known but not well researched. Unfortunately, a psychiatric approach has been taken with ME/CFS, but this is changing. At this time there are no approved treatments.  
The core [[List of symptoms in ME CFS|ME/CFS symptoms]] are: [[chronic fatigue]] (CF); [[post-exertional malaise]] (PEM); [[unrefreshing sleep]]/[[Sleep dysfunction|sleep problems]]; and [[Cognitive dysfunction|cognitive impairment]]/[[brain fog]] and/or [[orthostatic intolerance]] (OI).<ref name="symptoms" /><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 = National Academies|archive-url=|archive-date=|access-date= | authorlink =  | pages = 9-10}}</ref> 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="Algorithm">{{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 = | author-link =| date = 2015 | website = National Academies|archive-url=|archive-date=|access-date=}}</ref><ref name="guide" /> The [[Canadian Consensus Criteria]] (CCC) requires the core symptoms and [[Nervous system|neurological]], [[Autonomic nervous system|autonomic]], [[Neuroendocrine system|neuroendocrine]], [[immune system]], and [[myalgia]] 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 | authorlink8 = 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>


A 2015 study by the [[Institute of Medicine]] recognized the ME/CFS disease burden to be to 2.5 million Americans. In the US, "the direct and indirect economic costs of ME/CFS to society are estimated to be approximately over $18 to $24 billion annually."<ref>[https://www.nap.edu/read/19012/chapter/1 BEYOND Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness - National Academies of Medicine of Sciences Engineering Medicine]</ref> There is an estimated 17 million people with ME/CFS worldwide.<ref>[https://docs.google.com/spreadsheets/d/14PSpEi2hFcjH62gY1_GCM-WVE_7QWNYkKTT6oRBA5Ms/edit ME Prevalence by State and Congr District]</ref> A 2008 [[Centers for Disease Control & Prevention]] (CDC) study which used a [[CFS]] definition to diagnose, [[Fukuda criteria]], noted "Of the one to four million Americans who have CFS, less than 20% have been diagnosed."<ref>[https://www.cdc.gov/cfs/diagnosis/index.html Chronic Fatigue Syndrome - Diagnosis - Centers for Disease Control and Prevention]</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]] (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>[http://theargusreport.com/us-nih-report-calls-uk-definition-mecfs-scrapped/ US NIH Report Calls for UK Definition of ME/CFS to be Scrapped - The Argus Report By: Penny Swift]</ref><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="Inew2018">{{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="Inew2018" /><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="Times2012">{{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 or CFS.<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> Some people with adrenal fatilure are sometimes erroneously diagnosed with CFS.<ref name="ICC" />  CF is a symptom of many diseases, and illnesses, and should not be confused with the grossly misnamed disease CFS.


Take time when you are able to review this Primer. Because you are not well this can be overwhelming at times so only do what you are mentally and physically able.  
The acronym ME/CFS is widely used in research, clinicians, patient organizations, and patients.  


== Connect with organizations and other persons with ME/CFS ==
"The most common overlapping condition with ME/CFS is [[fibromyalgia]]."<ref name="ICC" /> 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>
*For information and support, you may want to review materials offered by a patient group in your area.  
 
Unfortunately, in the past a mostly psychiatric approach has been taken with ME/CFS, but this is changing. At this time there are no approved drug treatments. Until 2021, [[graded exercise therapy]] (GET) and [[cognitive behavioral therapy]] (CBT) were used in the [[United Kingdom|UK]] for treating ME/CFS, which caused harm.<ref name="OxfordBrookesSurvey"/> The [[Centers for Disease Control and Prevention]] (CDC) website states "ME/CFS is a '''biological illness''', not a psychologic disorder" and impacts multiple body systems.<ref name="etiology">{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/etiology-pathophysiology.html| title = Etiology and Pathophysiology {{!}} Presentation and Clinical Course {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2018-11-08 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-01-22}}</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|url=https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html| title = Symptoms of ME/CFS {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2019-01-18 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-01-22}}</ref> and says [[ME/CFS]] is a "disabling and complex disease."<ref name="what-is">{{Cite web|url=https://www.cdc.gov/me-cfs/about/index.html| title = What is ME/CFS? {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2019-01-18 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-04-12}}</ref>
 
Take time when you are able to review this Primer. Because you are not well, this can be overwhelming at times, so only do what you are mentally and physically able. 
 
[[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, [[allergy|allergic reaction]], and [[stress]].<ref name="grandround">{{Cite web|url=https://www.cdc.gov/grand-rounds/pp/2016/20160216-presentation-chronic-fatigue-H.pdf| title = CDC Public Health Grand Rounds - Chronic Fatigue Syndrome - Advancing Research and Clinical Education | last = | first = | author-link =| date = |website=cdc.gov | page = 6|archive-url=|archive-date=|access-date=}}</ref> 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|immunization]].<ref name="Primer2014">{{Cite web | 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 | 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= | last2 = Jason | first2 = Leonard}}</ref>
 
The disease [[ME/CFS]] is often diagnosed when a person does not recover from a [[flu-like illness]], [[mononucleosis]] or another [[HHV|herpesvirus]], [[Q fever]], an unidentified [[virus]], or [[:Category:Infectious agents|other infection]], and meets one or more [[Definitions of myalgic encephalomyelitis and chronic fatigue syndrome|diagnostic criteria for either ME, CFS, or ME/CFS]].<ref name="SEID-IOM2015"/>{{Rp|157-158}}<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: 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="Primer2014"/><ref>[http://www.meassociation.org.uk/about/the-symptoms-and-diagnosis-of-mecfs/ Symptoms and diagnosis of ME/CFS - ME Association]</ref><ref>[http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms Chronic Fatigue Syndrome - Symptoms - Web MD]</ref><ref name="ICC" />
 
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" /> 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> [[Rosemary 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. | author-link = Rosemary Underhill | 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>


:''See:'' [http://me-pedia.org/wiki/Category:Patient_groups_by_country Patient groups by country]
====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  |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"/>


:[[Health Rising]] has forums where you can ask questions, get support, and read about the latest research.
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>


*There are many research initiatives around the world working on ME/CFS.  
== 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


:''See'': [http://me-pedia.org/wiki/Category:Research_initiatives_by_country Research initiatives by country]
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>


:[[Solve ME/CFS]] produces printed, online and e-mail newsletters. Take their [http://solvecfs.org/do-i-have-mecfs-quiz/ Do I have ME/CFS? QUIZ]
<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


Scroll down for recommended viewing, reading, and other resources.
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>


== Disease onset and course of illness==
<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>
Most likely your [[ME/CFS]] was diagnosed because you did not recover from a flu-like illness, [[EBV]], [[Mononucleosis]], [[HHV]], [[Q fever]], [[Virus]] or other infections and your symptoms meet one or more diagnostic criteria for either ME, CFS or ME/CFS.<ref>[https://www.nap.edu/read/19012/chapter/7#157 IOM Report - INFECTION]</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><ref>[http://me-pedia.org/wiki/Definitions_of_ME_and_CFS Definitions of ME and CFS - MEpedia]</ref> Your health may never be the same and you will experience numerous symptoms and disease severity which can fluctuate day to day, week to week, month to month, year to year, and unless treatments are discovered you may be unwell for many years just as many with ME/CFS have been. Symptoms and disease severity vary among patients.<ref>[http://www.meassociation.org.uk/about/the-symptoms-and-diagnosis-of-mecfs/ Symptoms and diagnosis of ME/CFS - ME Association]</ref><ref>[http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms Chronic Fatigue Syndrome - Symptoms - Web MD]</ref><ref>[http://phoenixrising.me/mecfs-basics/chronic-fatigue-syndrome-mecfs-facts-chronic-fatigue-syndrome-is-2 Facts (ME/CFS) Severity]</ref>  


==== Pediatric ME/CFS ====
''Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome'' By Dr. [[David Kaufman]]/[[Unrest|''Unrest'']]
Children are also afflicted with ME/CFS.<ref>[http://www.openmedicinefoundation.org/2016/06/25/mecfs-in-children-by-dr-david-s-bell-2/ ME/CFS in Children - by David S. Bell, MD - Open Medicine Foundation]</ref><ref>[https://www.masscfids.org/pediatric-me-cfs-links Pediatric ME/CFS - Massachusetts CFIDS/ME FM Association]</ref> ''See'': [[Pediatric]].


==== Prognosis ====
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>
Unfortunately, prognosis for ME/CFS is generally poor. ''See'': [[Prognosis]]


==== Female to male ratio ====
==Epidemiology ==
Like many auto-immune and 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 is 6:1.<ref>[https://www.ncbi.nlm.nih.gov/pubmed/21244747 Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010]</ref> [[Fibromyalgia]] has a F/M 7:1 ratio and some ME/CFS patients have this additional diagnosis.<ref>[http://www.cdc.gov/arthritis/basics/fibromyalgia.htm Fibromyalgia - CDC]</ref><ref>[http://solvecfs.org/what-is-mecfs/ What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative]</ref>
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 1/3 to 1/2 become unemployed 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="SEID-IOM2015"/>{{Rp|181}} although it is usually diagnosed in adults.<ref name="what-is"/> "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 = 2018-11-08 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-01-31}}</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 = | author-link =| date = 2015 | website = National Academies|archive-url=|archive-date=|access-date=}}</ref><ref name="SEID-IOM2015">{{Cite book | last = Institute of Medicine | authorlink = Institute of Medicine| title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness|location=Washington, DC|publisher=The National Academies Press | date = 2015 | url=https://www.ncbi.nlm.nih.gov/books/NBK284902/
|isbn=0309316898 | pmid =  25695122
|doi = 10.17226/19012 }}</ref>{{Rp|32}} 90% of patients are undiagnosed.<ref name="what-is" />
*[[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. | author-link = | last2 = Hotopf | first2 = M. | authorlink2 = Matthew Hotopf | 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|quote=|via=}}</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 ==
== Symptoms ==
=== Hallmark symptom ===
[[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>{{Cite web|url=https://www.cdc.gov/me-cfs/symptoms-diagnosis/index.html| title = Symptoms and Diagnosis of ME/CFS {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2019-01-18 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-02-01}}</ref> There are many symptoms which people with ME/CFS experience, though those listed below are the core symptoms found in all patients.
*[[Post-exertional malaise]] (PEM) is the hallmark symptom of ME/CFS. After physical or mental 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) there is a payback which can be delayed 24-48 hours and can last 24 hours or more. 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>[http://solvecfs.org/unraveling-post-exertional-malaise/ Unraveling Post-Exertional Malaise - Solve ME/CFS Initiative By: Jennifer M. Spotila, J.D. - Plus a link to all 4 parts]</ref><ref>[http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms Chronic Fatigue Syndrome - Symptoms - Web MD]</ref><ref>[http://chronicfatigue.about.com/od/cfsglossary/g/malaise.htm Post-Exertional Malaise - About.com Health - FMS/ME/CFS]</ref>
 
[[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]]/[[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.<ref name="symptoms"/>]]


:Regarding PEM the [[CFIDS Association of America]] states: "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>
[[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 [[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 or mental 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.]]


=== Core and additional symptoms  ===
[[File:Brian vastag.png|thumb|left|[[Brian Vastag]] is an American and award-winning journalist and an ME/CFS patient; he won a disability benefit case against Prudential, proving that PEM is a severe symptom that keeps him from gainful employment.]]
The [[Institute of Medicine report]] (USA) listed these core symptoms in the [http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf Clinicians Guide]:
<div style="column-count:2;-moz-column-count:2;-webkit-column-count:2">
*[[Chronic fatigue]]
*[[Post-exertional malaise]] (PEM) This is a Hallmark Symptom of CFS, ME and ME/CFS
*[[Unrefreshing sleep]]
*[[Cognitive dysfunction]]
*[[Orthostatic intolerance]]
*[[Chronic pain]]
*[[Immune system]] Impairment
*Infection
</div>


==== Expanded lists of symptoms ====
[[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>]]
*[http://solvecfs.org/what-is-mecfs/ What are the symptoms of ME/CFS?] By: [[Solve ME/CFS]]


*[https://www.verywell.com/chronic-fatigue-syndrome-symptoms-716110 Chronic Fatigue Syndrome Symptoms - The Monster List!] By: [[About.com Health FMS/ME/CFS]]
[[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>]]


*[[Postural orthostatic tachycardia syndrome]] (POTS) is a form of Orthostatic Intolerance.
[[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="whatis">{{Cite web|url=https://www.omf.ngo/what-is-mecfs/| title = What is ME/CFS? | last = | first = | date = |website=[[Open Medicine Foundation]]|archive-url=|archive-date=|access-date= | authorlink = |publisher=Open Medicine Foundation}}</ref><ref name="symptoms"/><ref name="Cairns2005" /> there is a payback of ''worsening'' [[List of symptoms in ME CFS|ME/CFS symptoms]] which can be delayed 24-72 hours or more<ref>{{Cite web|url=http://www.whathealth.com/awareness/event/internationalcfsmeawarenessday.html| title = International CFS/ME Awareness Day - 12th May 2019 | last = Hartley | first = Simon|website=whathealth.com|language=en|access-date=2018-10-16}}</ref><ref name="Linderheimer2017">{{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="prognosis" /><ref name="Cairns2005" /> 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="Algorithm" /><ref name="guide" />
==== Other possible symptoms ====
*[[chronic pain]]
*[[immune system]]
*<span class="plainlinks">[[:Category:Neurological signs and symptoms|neurological signs and symptoms]]</span> See also: [[neuroinflammation]].
*[[List of symptoms in ME CFS|List of symptoms in ME/CFS]]
 
=== Comorbids  ===
*[[fibromyalgia]] (FMS)
*[[irritable bowel syndrome]] (IBS)
*[[multiple chemical sensitivity]] (MCS)
*[[temporomandibular joint disorder]] (TMJ)<ref>{{Cite web|url=https://solvecfs.org/what-is-mecfs/| title = Get the Facts about ME/CFS|website=Solve ME/CFS Initiative|language=en-US|access-date=2019-09-10}}</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 to discuss with your doctor ==
== Tests to discuss with your doctor ==
*[[Sleep study]] for [[Sleep apnea]], [[Restless leg syndrome]], [[Sleep disturbances]].  
* [[Natural killer cell]] (NKC) Blood Test
*[[Tilt table test]] for Orthostatic intolerance, POTS.
 
*[[Natural killer cell]]
*Sleep study for [[sleep apnea]], [[restless leg syndrome]], and other sleep disturbances.  
*[[Tilt table test]] for [[Orthostatic intolerance|OI]] or [[Postural orthostatic tachycardia syndrome|POTS]].
 
==Drugs and treatments==
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 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=|language=en-US}}</ref><ref>{{Cite news | url=http://cdn2.hubspot.net/hubfs/150154/docs/Hemispherx-Executive-Informational-Overview-11-27-16.pdf| title = Hemispherx Biopharma, Inc. Executive Informational Overview | last = | first = | date = Nov 27, 2016|work=Crystal Research Associates|access-date=|archive-url=|archive-date=|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=|access-date=2018-08-13}}</ref> In July 2018, AIM ImmunoTech announced the expansion of its [[United States|US]] [[compassionate use|Treatment Protocol/Expanded Access Program]], known as ''AMP-511'', to new ME/CFS 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''' allow treatments up to 100 ME/CFS patients at any one time to receive Ampligen infusions at [[Ampligen#Clinics|approved clinics]].<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 = | author-link =| date = Jan 2, 2019 | website = finance.yahoo.com|publisher=GlobeNewswire|language=en-US|archive-url=|archive-date=|access-date=2019-02-10}}</ref> The most recent clinical trial of Ampligen was open to [[Long COVID]] patients with ME/CFS, and was published in 2020.<ref name="Strayer2020"/>
 
[[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 | authorlink3 = | last4 = Alme | first4 = Kine | author-link4 = | last5 = Rekeland | first5 = Ingrid Gurvin | author-link5 = | last6 = Sapkota | first6 = Dipak  | authorlink6 = | last7 = Kristoffersen | first7 = Einar Kleboe | last8 = Sørland | first8 = Kari | last9 = Bruland | first9 = Ove | date = 2015-07-01 | editor-last = van der Feltz-Cornelis|editor-first = Christina | 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 will 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 [[orthostatic intolerance]].<ref name="monitor" /><ref name="Carruthers, 2003"/>
 
===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]]
Psychiatry has taken an [[Psychologization|inappropriate lead]] and treatment path for a biological disease. In the UK, [[graded exercise therapy|GET]] and [[cognitive behavioral therapy|CBT]] were employed by ME Clinics until late 2021. [[Exercise]] exacerbates symptoms and can further harm patients.<ref name="ng206">{{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><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 and even damaging results.<ref name="myhill" />
 
Treating a biological disease as a mental illness is not cost effective. The drugs are ineffective 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 kick in stopping any payment or shortening 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><ref>[http://thoughtsaboutme.com/2016/03/21/keep-an-eye-on-your-walitt-nih-study-poses-dramatic-risk-to-long-term-disability-benefits/ Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability Benefits - Thoughts About ME]</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 recently, [[graded exercise therapy]] (GET) and [[Cognitive behavioral therapy]] (CBT) were employed in the UK and Ireland, and are still used in some parts of Europe through ME Clinics.<ref name="ng206">{{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> They are highly controversial and not recommended by patients, most patient advocates, and research organizations nor by many doctors or researchers outside of the UK. Based on the flawed [[biopsychosocial model]] used in the [[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">{{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>
 
*[[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.


== Graded exercise therapy & Cognitive behavioral therapy ==
===Claims of curative treatments===
[[Graded exercise therapy]] (GET) and [[Cognitive behavioral therapy]] (CBT) are usually employed in the UK, Ireland and some parts of Europe through ME Clinics. They are highly controversial and not recommended by patients, most patient advocates, and research organizations nor by many doctors or researchers outside of the UK.
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 improve [[chronic fatigue]] (CF). ME/CFS patients experience an ongoing improper immune response and other [[List of abnormal findings in chronic fatigue syndrome and myalgic encephalomyelitis|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>{{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>{{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>


[[Exercise]], especially GET, can injure an ME/CFS patient further.
Additionally, there have been media reports of some athletes diagnosed with CFS that recovered in a relatively short period of time,<ref name="Inew2018" /><ref name="ABC2018" /><ref name="Times2012" /> may have had [[overtraining syndrome]],<ref name="spence" /> while some people with adrenal failure or other fatiguing illnesses are erroneously diagnosed with CFS.<ref name="ICC" />


== Recommended viewing ==
=== 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 [[GET]] and [[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=}}</ref>


==== Documentary ====
'''MEAction input'''
*[[Forgotten Plague]] is a US documentary about [[Ryan Prior]], a journalist with ME/CFS, who investigates the disease and its history and why the [[CDC]] has left millions sideline from life; available for [http://www.forgottenplague.com/ streaming and DVD ''purchase'']. (2015)
*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.


*[[Unrest]] is a US documentary film that will air on PBS's Independent Lens in 2018. [[Jennifer Brea]], a person with [[ME]], directs. (2017)
== Recommended viewing ==


==== Mini-doc & Short film ====
==== Documentaries ====
*[[Invisible Illness - Stories of Chronic Fatigue Syndrome]] is a [https://www.youtube.com/watch?v=9_HwOUiImvw Palo Alto Online, US Mini-Doc on Youtube]. It documents 3 people with [[CFS]] suffering from the same disease in varying degrees of illness. (2015)
'''Films'''
*[[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]]
*[[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]]


*[[The Last Great Medical Cover Up]] is a [https://vimeo.com/143904110 UK short Film on Vimeo] with several patient interviews. (2015)
==== Short film ====


====Shorts ====
*[[The Last Great Medical Cover Up]] is a [https://vimeo.com/143904110 UK short Film on Vimeo] with several patient interviews. (2015)
* #[[MillionsMissing]] provides a <5 min. short UK Video [http://millionsmissing.org/learn/?utm_content=bufferf61ee&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer 'What Is M.E.?'] Discusses the disease impact on several people with [[ME]]. (2016)


==== News media ====
==== News media ====
Line 92: Line 189:


==== Talks and interviews ====
==== Talks and interviews ====
*[http://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose What happens when you have a disease doctors can't diagnose] Jennifer Brea gives a [https://en.wikipedia.org/wiki/TED_(conference) TED Talk] to explain her psychiatric misdiagnosis of [https://en.wikipedia.org/wiki/Conversion_disorder Conversion disorder], her correct diagnosis of [[Myalgic encephalomyelitis]], the disease impact on her life and how women are more often to receive a psychiatric misdiagnosis for a biologic disease. (2016)
*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 titled [[Unrest]]) at [https://www.youtube.com/watch?v=zeIefNymFuw 5:30 and 10:20.] (2016)


*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 ==
== Recommended reading ==
====Government health organizations====
====Government health organizations====
:'''USA'''
:'''US'''


:[[Centers for Disease Control]] (CDC)
:[[Centers for Disease Control]] (CDC)
:*[https://www.cdc.gov/cfs/pediatric/factsheets.html Factsheets - Pediatric] Factsheets for Healthcare Professionals, Parents, and Education Professionals. (2014)
:*[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)
:[[National Institutes of Health]] (NIH)
:*[[Moving Toward Answers in ME/CFS]] (2017)
:*[[Moving Toward Answers in ME/CFS - NIH Director's Blog (2017)]]


:[[Institute of Medicine]] (IOM)
:[[Institute of Medicine]] (IOM)
:*[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/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_KeyFacts.pdf Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts] From the [[Institute of Medicine report]]. (2015)


:*[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdf Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness] Report Brief on 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 ====
==== ME/CFS research foundations ====
Line 116: Line 212:
:*[http://www.investinme.org/faqs.shtml Frequently Asked Questions]
:*[http://www.investinme.org/faqs.shtml Frequently Asked Questions]


:'''USA'''
:'''US'''


:[[Open Medicine Foundation]] (OMF)
:[[Open Medicine Foundation]] (OMF)
Line 125: Line 221:


:[[Emerge Australia]]
:[[Emerge Australia]]
:*[https://emerge.org.au/about-mecfs/diagnosis/mecfs/ What is ME/CFS?]
:*[https://www.emerge.org.au/what-is-mecfs/ What is ME/CFS?]


:'''UK'''
:'''UK'''


:[[ME Association]]
:[[ME Association]]
:*[http://www.meassociation.org.uk/about/what-is-mecfs/ What is ME/CFS?]
:*[http://www.meassociation.org.uk/ ME Association]


:[[Tymes Trust]] (Pediatric)
:[[Tymes Trust]] (Children and young people)
:*[http://www.tymestrust.org/ Tymes Trust]
:*[http://www.tymestrust.org/pdfs/mecfsseid.pdf Pediatric ME, CFS, SEID for Families and their GPs] (2016)
:*[http://www.tymestrust.org/pdfs/mecfsseid.pdf Pediatric ME, CFS, SEID for Families and their GPs] (2016)


:'''USA'''
:'''US'''
:[[Massachusetts CFIDS/ME & FM Association]]
:[[Massachusetts CFIDS/ME & FM Association]]
:*[https://www.masscfids.org/cfids-me-cfs About ME/CFS]
:*[https://www.masscfids.org/ Massachusetts CFIDS/ME & FM Association]


:[[Solve ME/CFS]]
:[[Solve ME/CFS]]
:*[https://solvecfs.org/ Solve ME/CFS Initiative]
:*[https://solvecfs.org/me-cfs-long-covid/about-the-disease/ What is ME/CFS?] - Solve ME/CFS Initiative (2017)
:*[http://solvecfs.org/what-is-mecfs/ Get the Facts about ME/CFS] (2016)
:*[http://solvecfs.org/what-is-mecfs/ Get the Facts about ME/CFS] (2016)
:*[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/wp-content/uploads/2013/06/SMCI_MECFS_FactSheet.pdf What is ME/CFS?] (2013)
:*[http://solvecfs.org/wp-content/uploads/2013/06/SMCI_MECFS_FactSheet.pdf What is ME/CFS?] (2013)
Line 146: Line 248:
:'''International'''  
:'''International'''  
:[[MEAction]]  
:[[MEAction]]  
:*[https://drive.google.com/file/d/1h_ZwdR4567k-mSoWahnC_id0F_fAA3Fb/view Caring for People with Myalgic Encephalomyelitis] (2018) Guide for Caretakers
:*[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/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&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer Reports and Fact Sheets] (2015)
:*[http://www.meaction.net/reports-and-fact-sheets/? Reports and Fact Sheets] (2015)


==== Other organizations ====
==== Other organizations ====
Line 156: Line 260:
==== Other reading====
==== 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
:*[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==
*[[Osler's Web]] is 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 further reports of loved ones who have died due to ME/CFS.<ref>[https://www.newscientist.com/letter/mg19125620-600-not-sadly-the-first/ Sadly, not the first (Comment Section)]</ref> See Editor's Note<ref>[https://www.newscientist.com/article/dn9342-first-official-uk-death-from-chronic-fatigue-syndrome/ First official UK death from chronic fatigue syndrome - New Scientist]</ref>
==Notable studies==
*2020, Effect of disease duration in a randomized Phase III trial of rintatolimod, an immune modulator for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome<ref name="Strayer2020">{{Cite journal| title = Effect of disease duration in a randomized Phase III trial of rintatolimod, an immune modulator for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2020-10-29|url=https://dx.plos.org/10.1371/journal.pone.0240403|journal=PLOS ONE|volume=15|issue=10| pages = e0240403 | last = Strayer | first=David R. | author-link = David Strayer | last2 = Young | first2 = Diane | authorlink2 = | last3 = Mitchell | first3 = William M. | authorlink3 = William Mitchell|language=en|doi=10.1371/journal.pone.0240403|pmc=PMC7595369|pmid=33119613|access-date=|issn=1932-6203|quote=|via=}}</ref> - [https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0240403 (Full text)]
*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=|access-date=2019-01-17 | last3 = Sheriff | first3 =Sulaiman | authorlink3 = | last4 = Maudsley | first4 = Andrew | authorlink4 = | 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)]
*2014, Right Arcuate Fasciculus Abnormality in Chronic Fatigue Syndrome<ref>{{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 = | 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]]]]
*[[Cytokine#Notable_studies|Cytokine ("Notable studies")]]
*[[List of enterovirus infection studies]]]
== Connect with organizations and other persons with ME/CFS ==
*For information and support, you may want to review materials offered by a patient group in your area.
:See: [[:Category:Patient groups by country|Patient groups by country]]
*:[[Science for ME]], [[Phoenix Rising]], r/cfs [https://www.reddit.com/r/cfs/], and [[Health Rising]] are forums where you can ask questions, get support, and read about the latest research.
*There are many research initiatives around the world working on ME/CFS.
:See: [[:Category:Research initiatives by country|Research initiatives by country]]
*:[[Solve ME/CFS]] produces printed, online, and e-mail newsletters. Take their [http://solvecfs.org/do-i-have-mecfs-quiz/ Do I have ME/CFS? QUIZ]
== See also ==
*[[Primer for family, friends and care providers]]
*[[Medical neglect and abuse]]
*[[Severe and very severe ME]]
*[[List of abnormal findings in chronic fatigue syndrome and myalgic encephalomyelitis|List of abnormal findings]]


==Learn more==
==Learn more==
*[[Definitions of ME and CFS]] Criteria for ME, CFS and ME/CFS
'''Key Facts'''
*[[Blood donation]]
*[https://www.omf.ngo/what-is-mecfs/ What is ME/CFS - Symptoms, Diagnosis and Research] Open Medicine Foundation
*[[Outbreaks]]
*[https://solvecfs.org/me-cfs-long-covid/about-the-disease/ What is ME/CFS?] - Solve ME/CFS Initiative
*[[Notable studies]]
*[https://www.nap.edu/resource/19012/MECFS_DiagnosticAlgorithm.jpg Diagnostic Algorithm]
*2019, [https://www.newyorker.com/culture/personal-history/a-town-for-people-with-chronic-fatigue A Town for People with Chronic Fatigue Syndrome] - New Yorker - about Ampligen
'''[[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 was 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 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 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 name="myhill">{{Cite web |url = http://drmyhill.co.uk/wiki/CFS_or_depression_-_what_are_the_differences| title =  CFS or depression - what are the differences | last = Myhill |first =Sarah  | authorlink = Sarah Myhill|website = DrMyhill|access-date = 2021-03-22}}</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==
===Other resources===
*[[Phoenix Rising]] Citizen Scientists debate the latest ME/CFS science.
*[[Science for ME]] Friendly forum on ME/CFS, FMS, and comorbid illnesses.
*[https://twitter.com/search?f=tweets&vertical=default&q=%23mecfs&src=tyah Twitter #mecfs] Connect with patients, caregivers, and ME/CFS organizations for support, articles, and research.
*[https://twitter.com/search?f=tweets&vertical=default&q=%23mecfs&src=tyah Twitter #mecfs] Connect with patients, caregivers, and ME/CFS organizations for support, articles, and research.
*[https://voat.co/v/CFS/ VOAT: CFS] A pinboard site with research, articles, videos and more!
*[[About.com Health FMS/ME/CFS]] Well written articles with simply stated facts about ME/CFS and Fibromyalgia.
*[[Phoenix Rising]] Citizen Scientists debate the latest ME/CFS science.
*[[MDJunction]] Support for patients and caregivers from other patients and caregivers.


== References ==
== References ==
 
{{Reflist}}
 


[[Category:Primers]]
[[Category:Primers]]

Latest revision as of 22:15, November 17, 2023

This Primer for patients will provide the information you need to better understand your personal diagnosis of chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME), or ME/CFS, which can be very different with severity and symptoms from patient to patient.

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)

The core ME/CFS symptoms are: chronic fatigue (CF); post-exertional malaise (PEM); unrefreshing sleep/sleep problems; and cognitive impairment/brain fog and/or orthostatic intolerance (OI).[1][2] A patient can have many more symptoms[3] and meet different criteria. Systemic Exertion Intolerance Disease (SEID), an ME/CFS criteria, allows for a patient to be diagnosed with the minimum core symptoms[4][2] The Canadian Consensus Criteria (CCC) requires the core symptoms and neurological, autonomic, neuroendocrine, immune system, and myalgia to meet its ME/CFS diagnostic criteria.[5] The International Consensus Criteria (ICC) is used to diagnose myalgic encephalomyelitis (ME) which requires the core symptoms and neurological, immune/gastrointestinal/genitourinary impairment, and energy metabolism/ion transport impairment symptoms for a diagnosis.[6]

Although the Fukuda[7] and the Oxford Criteria[8] are used for diagnosing chronic fatigue syndrome (CFS), they are both overly broad and there is criticism that patients are being misdiagnosed in both clinical and research settings as having CFS when in fact they are suffering from the symptom chronic fatigue (CF).[6][9][7][10][11] 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;[12][12][13][14] these athletes may have had overtraining syndrome (which has the symptom of CF) and not ME or CFS.[15] Some people with adrenal fatilure are sometimes erroneously diagnosed with CFS.[6] CF is a symptom of many diseases, and illnesses, and should not be confused with the grossly misnamed disease CFS.

The acronym ME/CFS is widely used in research, clinicians, patient organizations, and patients.

"The most common overlapping condition with ME/CFS is fibromyalgia."[6] 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.[16]

Unfortunately, in the past a mostly psychiatric approach has been taken with ME/CFS, but this is changing. At this time there are no approved drug treatments. Until 2021, graded exercise therapy (GET) and cognitive behavioral therapy (CBT) were used in the UK for treating ME/CFS, which caused harm.[17] The Centers for Disease Control and Prevention (CDC) website states "ME/CFS is a biological illness, not a psychologic disorder" and impacts multiple body systems.[18] The CDC recognizes the hallmark symptom of PEM which is a worsening of symptoms after physical, mental or emotional exertion[1] and says ME/CFS is a "disabling and complex disease."[19]

Take time when you are able to review this Primer. Because you are not well, this can be overwhelming at times, so only do what you are mentally and physically able.

Diagnostic Algorithm for SEID's minimum ME/CFS core symptoms

Disease onset and course of illness[edit | edit source]

ME/CFS can begin from many acute/sudden[20] events: usually viral or bacterial infections, but also trauma, surgery or childbirth, allergic reaction, and stress.[21] There is also a gradual onset in some people,[20][22] that is not attributed to any one event. Occasionally, ME/CFS has been triggered by environmental toxins or the receipt of an immunization.[23] Some say that the disease ME always has an acute/sudden infectious onset.[24]

The disease ME/CFS is often diagnosed when a person does not recover from a flu-like illness, mononucleosis or another herpesvirus, Q fever, an unidentified virus, or other infection, and meets one or more diagnostic criteria for either ME, CFS, or ME/CFS.[25]:157-158[26] Patients experience 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.[23][27][28][6]

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 energy production, and a possible genetic link.[29][18] The CDC notes there are abnormalities with the immune system, cellular metabolism, neuroendocrine disturbances, and blood pressure or heart rate regulation.[18]

Not a mental health disorder[edit | edit source]

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."[18]

No clear evidence that ME/CFS is contagious[edit | edit source]

Infectious episodes have led to outbreaks over the years and 72% of ME/CFS patients report an onset of a viral or bacterial infection.[21] 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 SARS pandemic and COVID-19 - there is no clear evidence that sporadic ME/CFS cases are contagious.[30]

Families, partners, and friends do not report contracting ME/CFS from someone with the disease nor do patients report passing it on to others.[31] Rosemary 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.[32] This was a higher prevalence than all genetic relatives except children of patients. Because ME/CFS can run in families, a genetic link is a line of research recommended by the CDC.[29]

Michael Sikora and collaborators at the Open Medicine Foundation hope that their research on the role of T cells and immune-related genes will help address "whether ME/CFS is an autoimmune or infectious disease, or simply an activation of the immune system".[33]

Blood donation and organ transplant[edit | edit source]

A tissue and blood donation ban is in force for ME/CFS in the United Kingdom (even if recovered),[34] Australia,[35] New Zealand,[36] most of Canada,[37] and for a time also in the United States,[38] initially due to the research on XMRV as being the likely infectious trigger of CFS[39] and showing that patients carried the virus.[38] Two papers on XMRV were retracted as the result was caused by laboratory contamination,[40][41] but many blood donation bans remain.[37]

The US American Red Cross no longer has statements barring transfusions or transplants for CFS,[42] but patients are expected to be in "good health" which would exclude most.[42] 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".[43] Patient charities discourage ME/CFS patients from donating blood,[44]

Mini-Docs[edit | edit source]

By Jen Brea/TED (2016)

What happens when you have a disease doctors can't diagnose By 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.[45][46]

By Veronica Weber/Palo Alto Online (2015)

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[47]

By Dr. David Kaufman/Unrest (2018)

Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome By Dr. David Kaufman/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.[48]

Epidemiology[edit | edit source]

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."[2] Some CFS patients can work with job accommodations but 1/3 to 1/2 become unemployed and many rely on SSDI/SSI.[49][50][51]

All races and cultures are afflicted with ME/CFS.[52][53] Children and adolescents are also diagnosed.[54][55]
Like many autoimmune and neuro-immune diseases where mostly women are afflicted,[56] the ME/CFS female/male patient ratio per Capelli et al. is 6:1[57] while the CDC states 4:1.[53]
Pediatric ME/CFS is defined by the CDC[58] and the National Academy of Medicine (NAM)[25]:181 although it is usually diagnosed in adults.[19] "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."[59] The prognosis in adolescents is considered to be better than in adults.[60][30] Children are diagnosed with ME/CFS at three months of illness under SEID and CCC and ME is diagnosed immediately under ICC.[61][2][5][6]
"Worldwide, there may be as many as 17 – 24 million people with ME/CFS."[62] 25% of ME/CFS patients are housebound or bedbound at some point in their illness.[63][25]:32 90% of patients are undiagnosed.[19]
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.[64] The majority of patients remains significantly impaired. A substantial improvement however is noted in an estimated 40% of patients.[64][65]

Symptoms[edit | edit source]

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.[66] There are many symptoms which people with ME/CFS experience, though those listed below are the core symptoms found in all patients.

Rosa age 25 in 1986 and mildly ill with ME/CFS's core symptoms. In 2015 the SEID criteria were released. Rosa read about PEM and how it is delayed and makes ME/CFS symptoms like CF, OI, and cognition worse. Her life since age 17 fell into place as she never connected her worsening symptoms with increased physical or mental exertion 24-72 hours prior. She believes not understanding PEM made her illness worsen over the years and is now disabled meeting the CCC with PEM.
Brian Vastag is an American and award-winning journalist and an ME/CFS patient; he won a disability benefit case against Prudential, proving that PEM is a severe symptom that keeps him from gainful employment.
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.[67]
First photo, me in my wheelchair on a rare trip out. Second photo, the inevitable crash. Eye half closed, slurred speech, dizzy, weak, etc. #TwoFacesofME[68]
#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 [so] I wish that one day science will help me & all the #MeCfs sufferers around the globe.[69]
  • 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)[3][1][64] there is a payback of worsening ME/CFS symptoms which can be delayed 24-72 hours or more[70][71][72] and can last 24 hours and even days, weeks, or months.[73][74] 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.[3][60][64] Regarding PEM the CFIDS Association of America states:

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).[75]

Other possible symptoms[edit | edit source]

Comorbids[edit | edit source]

Government guides on symptoms[edit | edit source]

US Government guides on symptoms

Canada guides on symptoms

Tests to discuss with your doctor[edit | edit source]

Drugs and treatments[edit | edit source]

There are currently no 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 potential treatments, though their evidence base is limited, as most research into treatments has gone into unsuccessful psychological approaches to treatment.

Drugs[edit | edit source]

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.[77]

Attempts to obtain FDA approval for Ampligen in the US have failed, but it is available to some people on compassionate use.[78] Argentina approved Ampligen for severe ME/CFS in 2016.[79][80] Also in 2016, it was made available on a limited basis in Europe.[81] In July 2018, AIM ImmunoTech announced the expansion of its US Treatment Protocol/Expanded Access Program, known as AMP-511, to new ME/CFS patients.[82] AMP-511 allow treatments up to 100 ME/CFS patients at any one time to receive Ampligen infusions at approved clinics.[83] The most recent clinical trial of Ampligen was open to Long COVID patients with ME/CFS, and was published in 2020.[84]

Rituximab, a lymphoma drug, had shown promising results in initial trials in Norway,[85] 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.[86] A phase III trial published in 2019 showed Rituximab does not improve ME/CFS.[87]


Jarred Younger announced in March 2016 that he will be undertaking a trial of low dose naltrexone (LDN) in ME/CFS.[88]

Treating other conditions[edit | edit source]

Different forms of OI are treated with beta-blockers (Metopropol), Fludrocortisone (Florinef), and Pyridostigmine.[5] 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 sensitive to medications.[89] 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."[89] For instance, tricyclic drugs can improve mood and help with sleep and pain. However, in some in can worsen orthostatic intolerance.[89][5]

Controversy[edit | edit source]

Jennifer Brea is an 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 neurological problems. Her neurologist diagnosed her with "conversion disorder" (hysteria). When walking home from his office, she collapsed. Jen then needed to use a wheelchair, keeping her legs up due to POTS as her blood pooled into her legs

Psychiatry has taken an inappropriate lead and treatment path for a biological disease. In the UK, GET and CBT were employed by ME Clinics until late 2021. Exercise exacerbates symptoms and can further harm patients.[90][17][91] Depression and anxiety drugs have been utilized usually with poor and even damaging results.[92]

Treating a biological disease as a mental illness is not cost effective. The drugs are ineffective 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 kick in stopping any payment or shortening the payout time-frame.[93][94][95][96]

Graded exercise therapy & Cognitive behavioral therapy[edit | edit source]

Emma Shorter, is a citizen of Scotland. Here, she gives testimony before Parliament's Petitions Committee on GET and how it put her in a wheelchair

.

Until recently, graded exercise therapy (GET) and Cognitive behavioral therapy (CBT) were employed in the UK and Ireland, and are still used in some parts of Europe through ME Clinics.[90] They are highly controversial and not recommended by patients, most patient advocates, and research organizations nor by many doctors or researchers outside of the UK. Based on the flawed biopsychosocial model used in the 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.[17]

Claims of curative treatments[edit | edit source]

Charlatans claim they can cure CFS (per the CDC "there is no cure"[97]) when in reality they may be able to improve chronic fatigue (CF). ME/CFS patients experience an ongoing improper immune response and 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.[18][98][99]

Additionally, there have been media reports of some athletes diagnosed with CFS that recovered in a relatively short period of time,[12][13][14] may have had overtraining syndrome,[15] while some people with adrenal failure or other fatiguing illnesses are erroneously diagnosed with CFS.[6]

Working with government to move forward[edit | edit source]

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 Health and Human Services (HHS) funding to develop Centers of Excellence.[100] #MEAction reports on this ongoing process.

CDC Website updates[edit | edit source]

  • Jul 12, 2018, the "Information for Healthcare Providers" tab and its sub-tabs were updated.[103][104]
  • 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: Chronic Fatigue Syndrome: It's Real, and We Can Do Better.[105]

MEAction input

  • Jul 29, 2018, 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[edit | edit source]

Documentaries[edit | edit source]

Films

Unrest.jpg
Forgotten Plague.jpeg

Short film[edit | edit source]

News media[edit | edit source]

Talks and interviews[edit | edit source]

Recommended reading[edit | edit source]

Government health organizations[edit | edit source]

US
Centers for Disease Control (CDC)
National Institutes of Health (NIH)
Institute of Medicine (IOM)

ME/CFS research foundations[edit | edit source]

UK
Invest in ME
US
Open Medicine Foundation (OMF)

ME/CFS organizations[edit | edit source]

Australia
Emerge Australia
UK
ME Association
Tymes Trust (Children and young people)
US
Massachusetts CFIDS/ME & FM Association
Solve ME/CFS
International
MEAction

Other organizations[edit | edit source]

National Organization for Rare Disorders (NORD)

Other reading[edit | edit source]

History[edit | edit source]

Deaths of ME/CFS patients[edit | edit source]

Death certificates with ME or CFS

In the UK, United States, and Australia there are further reports of loved ones who have died due to ME/CFS.[106] See Editor's Note[107]

Notable studies[edit | edit source]

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 biomarker for CFS.

Top scans: Healthy control patient; Bottom scans: chronic fatigue syndrome (CFS) patient. Image By: Michael Zeineh

Connect with organizations and other persons with ME/CFS[edit | edit source]

  • For information and support, you may want to review materials offered by a patient group in your area.
See: Patient groups by country
  • There are many research initiatives around the world working on ME/CFS.
See: Research initiatives by country

See also[edit | edit source]

Learn more[edit | edit source]

Key Facts

Patient mental health

Patients that had been deemed as suffering from mental health and not a biological illness:
  • Karina Hansen is a young Danish woman taken from her family for 3 1/2 years due to Per Fink's insistence her ME was 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 paralyzed and mute and was let go in the deep end to make him swim and put on a scary theme park ride to scare him into moving.

Outbreaks

Other resources[edit | edit source]

  • Phoenix Rising Citizen Scientists debate the latest ME/CFS science.
  • Science for ME Friendly forum on ME/CFS, FMS, and comorbid illnesses.
  • Twitter #mecfs Connect with patients, caregivers, and ME/CFS organizations for support, articles, and research.

References[edit | edit source]

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