Primer for family, friends and care providers: Difference between revisions

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
m (Text replacement - "first2=L" to " first2 = L")
m (Text replacement - ". C. |" to ".C. |")
(8 intermediate revisions by the same user not shown)
Line 1: Line 1:
{{mbox|text= Editors: Edits to this Primer may require the same edits to the other [[:Category:Primers|Primers]].}}
{{mbox|text= Editors: Edits to this Primer may require the same edits to the other [[:Category:Primers|Primers]].}}
'''Primer for family, friends and care providers''' is for those who know or care for someone with [[ME/CFS|myalgic encephalomyelitis/chronic fatigue syndrome]] (ME/CFS), a complicated and life-altering systemic, biological, [[neuroimmune disease]].<ref name="whatis">{{Cite web|url=https://www.omf.ngo/what-is-mecfs/ | title = What is ME/CFS?|website=Open Medicine Foundation|language=en-US|access-date=2019-01-24}}</ref> Patient care and severity of the disease is poorly understood due to decades of research neglect and a lack of clinical care worldwide.<ref>{{Cite web|url=http://healthaffairs.org/blog/2016/02/04/reexamining-chronic-fatigue-syndrome-research-and-treatment-policy/ | title = Reexamining Chronic Fatigue Syndrome Research And Treatment Policy | last = Tuller | first=David| date = Feb 4, 2016 | website = healthaffairs.org|language=en|archive-url=|archive-date=|access-date=2018-09-07}}</ref><ref>{{Cite news|url=http://www.meaction.net/2017/01/22/funding-for-me-research-centers-announced-falls-way-short/ | title = Funding for U.S. research centers falls way short - #MEAction| date = 2017-01-22|work=#MEAction|access-date=2018-09-07|language=en-US}}</ref>  
'''Primer for family, friends and care providers''' is for those who know or care for someone with [[ME/CFS|myalgic encephalomyelitis/chronic fatigue syndrome]] (ME/CFS), a complicated and life-altering systemic, biological, [[neuroimmune disease]].<ref name="whatis">{{Cite web|url=https://www.omf.ngo/what-is-mecfs/ | title = What is ME/CFS?|website=Open Medicine Foundation|language=en-US|access-date=2019-01-24}}</ref> Patient care and severity of the disease is poorly understood due to decades of research neglect and a lack of clinical care worldwide.<ref>{{Cite web|url=http://healthaffairs.org/blog/2016/02/04/reexamining-chronic-fatigue-syndrome-research-and-treatment-policy/ | title = Reexamining Chronic Fatigue Syndrome Research And Treatment Policy | last = Tuller | first=David| date = Feb 4, 2016 | website = healthaffairs.org|language=en|archive-url=|archive-date=|access-date=2018-09-07}}</ref><ref>{{Cite news | url=http://www.meaction.net/2017/01/22/funding-for-me-research-centers-announced-falls-way-short/ | title = Funding for U.S. research centers falls way short - #MEAction| date = 2017-01-22|work=#MEAction|access-date=2018-09-07|language=en-US}}</ref>  


Diagnosing [[ME/CFS]] is difficult as there is no clinically accepted [[Diagnostic biomarker|biomarker]] and there are numerous [[Definitions of myalgic encephalomyelitis and chronic fatigue syndrome|definitions and criteria]] that have been developed and utilized over the decades.  
Diagnosing [[ME/CFS]] is difficult as there is no clinically accepted [[Diagnostic biomarker|biomarker]] and there are numerous [[Definitions of myalgic encephalomyelitis and chronic fatigue syndrome|definitions and criteria]] that have been developed and utilized over the decades.  
<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>
<embedvideo service="youtube" dimensions="400" alignment="right" container="frame" description="''What is ME/CFS'' By Open Medicine Foundation - OMF. Linda Tannenbaum, Founder & CEO/President, talks about ME/CFS and how OMF is leading research and delivering hope (2018)">https://www.youtube.com/watch?v=pqDubEeIBtA</embedvideo>


The core [[List of symptoms in ME CFS|ME/CFS symptoms]] are: [[post-exertional malaise]] (PEM); [[chronic fatigue]] (CF), [[unrefreshing sleep]]/[[Sleep dysfunction|sleep problems]]; and [[Cognitive dysfunction|cognitive impairment]]/[[brain fog]] and/or [[orthostatic intolerance]] (OI).<ref name="symptoms" /><ref name="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="DiagnosticAlgorithm">{{Cite web|url=http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_DiagnosticAlgorithm | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness - Diagnostic Algorithm|last= | first = |authorlink= | date = 2015 | website = |archive-url=|archive-date=|access-date=}}</ref><ref name="guide"/> and the patient may have other symptoms.<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 = A C 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 | page = 7-115 | date = 2003 | pmid =  | doi = 10.1300/J092v11n01_02
The core [[List of symptoms in ME CFS|ME/CFS symptoms]] are: [[post-exertional malaise]] (PEM); [[chronic fatigue]] (CF), [[unrefreshing sleep]]/[[Sleep dysfunction|sleep problems]]; and [[Cognitive dysfunction|cognitive impairment]]/[[brain fog]] and/or [[orthostatic intolerance]] (OI).<ref name="symptoms" /><ref name="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="DiagnosticAlgorithm">{{Cite web|url=http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_DiagnosticAlgorithm | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness - Diagnostic Algorithm | last = | first = |authorlink= | date = 2015 | website = |archive-url=|archive-date=|access-date=}}</ref><ref name="guide"/> and the patient may have other symptoms.<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 = AC 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 | page = 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>
| 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 = AC Peter Powles | last9 = Speight | first9 = Nigel | authorlink9 = Nigel Speight | last10 = Vallings | first10 = Rosamund | authorlink10 = Rosamund Vallings | last11 = Bateman | first11 = Lucinda | authorlink11 = Lucinda Bateman | last12 = Baumgarten-Austrheim | first12 = Barbara | authorlink12 = Barbara Baumgarten-Austrheim | last13 = Bell | first13 = David | author-link13=David Bell | last14 = Carlo-Stella | first14 = Nicoletta | author-link14=Nicoletta Carlo-Stella | last15 = Chia | first15 = John | author-link15=John Chia | last16 = Darragh | first16 = Austin | author-link16=Austin Darragh | last17 = Jo | first17 = Daehyun | author-link17=Daehyun Jo | last18 = Lewis | first18 = Donald | author-link18=Donald Lewis | last19 = Light | first19 = Alan | author-link19 = Alan Light | last20 = Marshall-Gradisnik | first20 = Sonya | author-link20 = Sonya Marshall-Gradisnik | last21 = Mena | first21 = Ismael | author-link21 = Ismael Mena | last22 = Mikovits | first22 = Judy | author-link22 = Judy Mikovits | last23 = Miwa | first23 = Kunihisa | author-link23 = Kunihisa Miwa | last24 = Murovska | first24 = Modra | author-link24 = Modra Murovska | last25 = Pall | first25 = Martin | author-link25 = Martin Pall | last26 = Stevens | first26 = Staci | author-link26 = Staci Stevens | date = 2011-08-22 | title=Myalgic encephalomyelitis: International Consensus Criteria|url=https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2796.2011.02428.x|journal=Journal of Internal Medicine|language=en|volume=270|issue=4|pages=327–338|doi=10.1111/j.1365-2796.2011.02428.x|issn=0954-6820|pmc=3427890|pmid=21777306|via=}}</ref>


Although the [[Fukuda criteria|Fukuda]]<ref name="fukuda1994">{{Cite journal | last = Fukuda | first=K.|author-link=Keiji Fukuda | last2 = Straus |  first2 = S.E. | authorlink2 = Stephen Straus | last3 = Hickie | first3=I. | authorlink3 = Ian Hickie | last4 = Sharpe | first4=M. C. | authorlink4 = Michael Sharpe | last5 = Dobbins | first5=J.G. |authorlink5 = s | 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 = AW | last5 = Clare | first6 = A | last6 = David | first7 = RH | last7 = Edwards | first8 = KE | last8 = Hawton | first9 = HP | last9 = Lambert}}</ref> are sometimes 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>{{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|last= | first = }}</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 [[myalgic encephalomyelitis]] (ME) or [[chronic fatigue syndrome]] (CFS)  who have recovered in a relatively short period of time after rest, supplementation, and diet changes;<ref name="Inews2018">{{Cite news |url = https://inews.co.uk/news/health/marathon-runner-quit-work-me-cfs-diet-change/ |title =Marathon runner forced to quit work after developing ME claims diet change gave him his life back | first = Claudia | last = Tanner|publisher =iNews| date = 2018}}</ref><ref name="Times2017">{{Cite news|url=https://www.thetimes.co.uk/article/muslim-fighter-with-me-who-left-an-arranged-marriage-to-win-world-title-svxhhzt57 | title = Muslim fighter with ME who left an arranged marriage to win world |last=Broadbent |  first = Rick| date = 2017-12-02|work=The Times|access-date=2019-02-28|archive-url=|archive-date=|language=en|issn=0140-0460|quote=}}</ref><ref name="ABC2018">{{Cite news |url = http://www.abc.net.au/7.30/committee-reviews-potentially-harmful-and-old/10010408 |at=6mins 18s|title =Committee reviews 'potentially harmful and old fashioned' chronic fatigue treatments|publisher =ABC News |first =Andy|last = Park | first2 = Clare  | last2 = O'Halloran}}</ref><ref name="London2019">{{Cite news|url=https://www.thetimes.co.uk/article/nathan-douglas-london-2012-was-the-darkest-period-of-my-life-vxt5gftcx | title = Nathan Douglas: London 2012 was the darkest period of my life|last=Broadbent |  first = Rick| date = 2019-02-27|work=The Times|access-date=2019-02-28|archive-url=|archive-date=|language=en|issn=0140-0460|quote=}}</ref> these athletes may have had [[overtraining syndrome]] (which has the symptom of CF) and not ME, CFS.<ref name="spence">{{Cite web |last=Spence |  first = Vance | author-link=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> CF is a symptom of many diseases and illnesses, and should not be confused with the grossly misnamed disease CFS. Some people with adrenal failure are sometimes wrongly diagnosed with CFS.<ref name="ICC" />
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 = s | 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 = AW | last5 = Clare | first6 = A | last6 = David | first7 = RH | last7 = Edwards | first8 = KE | last8 = Hawton | first9 = HP | last9 = Lambert}}</ref> are sometimes 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>{{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 | last = | first = }}</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 [[myalgic encephalomyelitis]] (ME) or [[chronic fatigue syndrome]] (CFS)  who have recovered in a relatively short period of time after rest, supplementation, and diet changes;<ref name="Inews2018">{{Cite news |url = https://inews.co.uk/news/health/marathon-runner-quit-work-me-cfs-diet-change/ |title =Marathon runner forced to quit work after developing ME claims diet change gave him his life back | first = Claudia | last = Tanner|publisher =iNews| date = 2018}}</ref><ref name="Times2017">{{Cite news | url=https://www.thetimes.co.uk/article/muslim-fighter-with-me-who-left-an-arranged-marriage-to-win-world-title-svxhhzt57 | title = Muslim fighter with ME who left an arranged marriage to win world | last = Broadbent |  first = Rick| date = 2017-12-02|work=The Times|access-date=2019-02-28|archive-url=|archive-date=|language=en|issn=0140-0460|quote=}}</ref><ref name="ABC2018">{{Cite news |url = http://www.abc.net.au/7.30/committee-reviews-potentially-harmful-and-old/10010408 |at=6mins 18s|title =Committee reviews 'potentially harmful and old fashioned' chronic fatigue treatments|publisher =ABC News |first =Andy|last = Park | first2 = Clare  | last2 = O'Halloran}}</ref><ref name="London2019">{{Cite news | url=https://www.thetimes.co.uk/article/nathan-douglas-london-2012-was-the-darkest-period-of-my-life-vxt5gftcx | title = Nathan Douglas: London 2012 was the darkest period of my life | last = Broadbent |  first = Rick| date = 2019-02-27|work=The Times|access-date=2019-02-28|archive-url=|archive-date=|language=en|issn=0140-0460|quote=}}</ref> these athletes may have had [[overtraining syndrome]] (which has the symptom of CF) and not ME, CFS.<ref name="spence">{{Cite web | last = Spence |  first = Vance | author-link=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> CF is a symptom of many diseases and illnesses, and should not be confused with the grossly misnamed disease CFS. Some people with adrenal failure are sometimes wrongly diagnosed with CFS.<ref name="ICC" />


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


"The most common overlapping condition with ME/CFS is [[fibromyalgia]]."<ref name="ICC"/><ref name="Jason2001">{{Cite journal | last= Jason | first = Leonard | last2 = Taylor |  first2 = R.R. | last3 = Kennedy | first3 = C.L. | last4 = Song | first4 = S | last5 = Johnson | first5=D | last6 = Torres | first6=S.R.  | date = 2001-01-01 | title = Chronic fatigue syndrome: Comorbidity with fibromyalgia and psychiatric illness|url=https://www.researchgate.net/publication/285787383_Chronic_fatigue_syndrome_Comorbidity_with_fibromyalgia_and_psychiatric_illness|journal=Medicine and Psychiatry|volume=4|pages=29–34}}</ref> While some have posited ME/CFS and fibromyalgia are variants of the same illness, [[Benjamin Natelson]], MD summoned considerable amounts of data that suggest the two illnesses differ with different pathophysiologic processes leading to different treatments.<ref name="Natelson2019">{{Cite journal|last=Natelson | first = Benjamin H.  | date = 2019-02-19 | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia: Definitions, Similarities, and Differences|url=https://www.clinicaltherapeutics.com/article/S0149-2918(19)30003-7/abstract|journal=Clinical Therapeutics|language=English|volume=41|issue=4 | pages = 612|doi=10.1016/j.clinthera.2018.12.016|issn=0149-2918|pmid=30795933}}</ref>
"The most common overlapping condition with ME/CFS is [[fibromyalgia]]."<ref name="ICC"/><ref name="Jason2001">{{Cite journal | last= Jason | first = Leonard | last2 = Taylor |  first2 = R.R. | last3 = Kennedy | first3 = C.L. | last4 = Song | first4 = S | last5 = Johnson | first5=D | last6 = Torres | first6=S.R.  | date = 2001-01-01 | title = Chronic fatigue syndrome: Comorbidity with fibromyalgia and psychiatric illness|url=https://www.researchgate.net/publication/285787383_Chronic_fatigue_syndrome_Comorbidity_with_fibromyalgia_and_psychiatric_illness|journal=Medicine and Psychiatry|volume=4|pages=29–34}}</ref> While some have posited ME/CFS and fibromyalgia are variants of the same illness, [[Benjamin Natelson]], MD summoned considerable amounts of data that suggest the two illnesses differ with different pathophysiologic processes leading to different treatments.<ref name="Natelson2019">{{Cite journal | last = Natelson | first = Benjamin H.  | date = 2019-02-19 | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia: Definitions, Similarities, and Differences|url=https://www.clinicaltherapeutics.com/article/S0149-2918(19)30003-7/abstract|journal=Clinical Therapeutics|language=English|volume=41|issue=4 | pages = 612|doi=10.1016/j.clinthera.2018.12.016|issn=0149-2918|pmid=30795933}}</ref>


Unfortunately, a [[Psychologization|psychiatric approach]] has been taken with ME/CFS in the past, 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, and caused significant harm.<ref name="OxfordBrookesSurvey"/><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> 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 | title = Etiology and Pathophysiology {{!}} Presentation and Clinical Course {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)|url=https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/etiology-pathophysiology.html|website=[[Centers for Disease Control and Prevention]]| date = 2018-11-08|access-date=2019-01-22|language=en-us}}</ref> The CDC recognizes the hallmark symptom of [[post-exertional malaise]] which is a worsening of symptoms after physical, mental or emotional exertion<ref name="symptoms">{{Cite web | title = Symptoms of ME/CFS {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)|url=https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html|website=[[Centers for Disease Control and Prevention]]| date = 2019-01-18|access-date=2019-01-22|language=en-us}}</ref> and says [[ME/CFS]] is a "disabling and complex disease."<ref name="what-is" /> 
Unfortunately, a [[Psychologization|psychiatric approach]] has been taken with ME/CFS in the past, 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, and caused significant harm.<ref name="OxfordBrookesSurvey"/><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> 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 | title = Etiology and Pathophysiology {{!}} Presentation and Clinical Course {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)|url=https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/etiology-pathophysiology.html|website=[[Centers for Disease Control and Prevention]]| date = 2018-11-08|access-date=2019-01-22|language=en-us}}</ref> The CDC recognizes the hallmark symptom of [[post-exertional malaise]] which is a worsening of symptoms after physical, mental or emotional exertion<ref name="symptoms">{{Cite web | title = Symptoms of ME/CFS {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)|url=https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html|website=[[Centers for Disease Control and Prevention]]| date = 2019-01-18|access-date=2019-01-22|language=en-us}}</ref> and says [[ME/CFS]] is a "disabling and complex disease."<ref name="what-is" /> 
Line 19: Line 19:


== Recommended reading for care providers ==
== Recommended reading for care providers ==
* [https://drive.google.com/file/d/1h_ZwdR4567k-mSoWahnC_id0F_fAA3Fb/view Caring for People with Myalgic Encephalomyelitis]<ref name=":14">{{Cite web|url=https://drive.google.com/file/d/1h_ZwdR4567k-mSoWahnC_id0F_fAA3Fb/view?usp=embed_facebook | title = Caregivers Guide to ME.pdf|last= | first = |authorlink=| date = |website=Google Docs|publisher=MEAction|archive-url=|archive-date=|access-date=2019-03-31}}</ref> by #[[MEAction]]
* [https://drive.google.com/file/d/1h_ZwdR4567k-mSoWahnC_id0F_fAA3Fb/view Caring for People with Myalgic Encephalomyelitis]<ref name=":14">{{Cite web|url=https://drive.google.com/file/d/1h_ZwdR4567k-mSoWahnC_id0F_fAA3Fb/view?usp=embed_facebook | title = Caregivers Guide to ME.pdf | last = | first = |authorlink=| date = |website=Google Docs|publisher=MEAction|archive-url=|archive-date=|access-date=2019-03-31}}</ref> by #[[MEAction]]
<blockquote>Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome or ME/CFS) is a complex, challenging disease for everyone involved - not least the caregiver. Caring for someone with ME will require adaptability, steadfast patience and commitment over many years, if not a lifetime.<ref name=":14" /></blockquote>
<blockquote>Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome or ME/CFS) is a complex, challenging disease for everyone involved - not least the caregiver. Caring for someone with ME will require adaptability, steadfast patience and commitment over many years, if not a lifetime.<ref name=":14" /></blockquote>


Line 48: Line 48:


== Disease onset and course of illness==
== 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 | author-link=Lily Chu | last2 = Valencia | first2=Ian J. | authorlink2 = Ian Valencia | last3 = Garvert | first3=Donn W. | authorlink3 =  | last4 = Montoya | first4=Jose G. | authorlink4 = Jose Montoya | authorlink5 = | 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, [[anaphylaxis|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 = |authorlink=| 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-index">{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/index.html | title = Presentation and Clinical Course of ME/CFS {{!}} Information for Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS| date = 2018-12-12|website=[[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-02-07}}</ref> that is not attributed to any one event.  Occasionally, ME/CFS has been triggered by [[Environmentally acquired illness|environmental toxins]] or the receipt of an [[Vaccine|immunizing injection]].<ref name="Primer2014">{{Citation | date = 2014 | url=https://www.massmecfs.org/images/pdf/Primer_2014.pdf | title = Chronic Fatigue Syndrome Myalgic Encephalomyelitis Primer for Clinical Practitioners | last1 = ((International Association for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis))|author-link=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|location=Chicago, USA|publisher= International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis |quote=The illness can vary from mild to severe, with symptoms that may fluctuate significantly from hour to hour and day to day.}}</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>
[[Onset of ME/CFS|ME/CFS can begin]] from many acute/sudden<ref name="Chu2019">{{Cite journal | last = Chu | first = Lily | author-link=Lily Chu | last2 = Valencia | first2=Ian J. | authorlink2 = Ian Valencia | last3 = Garvert | first3=Donn W. | authorlink3 =  | last4 = Montoya | first4=Jose G. | authorlink4 = Jose Montoya | authorlink5 = | 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, [[anaphylaxis|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 = |authorlink=| 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-index">{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/index.html | title = Presentation and Clinical Course of ME/CFS {{!}} Information for Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS| date = 2018-12-12|website=[[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-02-07}}</ref> that is not attributed to any one event.  Occasionally, ME/CFS has been triggered by [[Environmentally acquired illness|environmental toxins]] or the receipt of an [[Vaccine|immunizing injection]].<ref name="Primer2014">{{Citation | date = 2014 | url=https://www.massmecfs.org/images/pdf/Primer_2014.pdf | title = Chronic Fatigue Syndrome Myalgic Encephalomyelitis Primer for Clinical Practitioners | last1 = ((International Association for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis))|author-link=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|location=Chicago, USA|publisher= International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis |quote=The illness can vary from mild to severe, with symptoms that may fluctuate significantly from hour to hour and day to day.}}</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|another 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="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 - By: Cort Johnson - June 2014]</ref> Patients  experience [[List of symptoms in ME CFS|numerous symptoms]] and disease severity which fluctuate from day to day, week to week, month to month, year to year, and even decade to decade.<ref name="Primer2014"/>  Furthermore, 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 name="WebMD">{{Cite web |url=http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms |title =Chronic Fatigue Syndrome - Symptoms |website=Web MD|access-date = 2022-04-12}}</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|another 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="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 - By: Cort Johnson - June 2014]</ref> Patients  experience [[List of symptoms in ME CFS|numerous symptoms]] and disease severity which fluctuate from day to day, week to week, month to month, year to year, and even decade to decade.<ref name="Primer2014"/>  Furthermore, 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 name="WebMD">{{Cite web |url=http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms |title =Chronic Fatigue Syndrome - Symptoms |website=Web MD|access-date = 2022-04-12}}</ref>
Line 58: Line 58:


===No clear evidence that ME/CFS is contagious===
===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>
[[: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> However, [[Rosemary Underhill|Underhill]] and O'Gorman (2006) researched 219 patients with ME/CFS, and concluded that close household contact and genetics were both risk factors for CFS, finding 3.2% of spouses/partners of those with CFS also had the illness.<ref name="UnderhillInfectious">{{Cite journal|last=Underhill | first = Rosemary A.  | last2 = O'Gorman |  first2 = Ruth| date = 2006-01-01 | title = Prevalence of Chronic Fatigue Syndrome and Chronic Fatigue Within Families of CFS Patients|url=https://doi.org/10.1300/J092v13n01_02|journal=Journal of Chronic Fatigue Syndrome|volume=13|issue=1|pages=3–13|doi=10.1300/J092v13n01_02|issn=1057-3321}}</ref> This was a higher prevalence than all genetic relatives except children of patients. Because ME/CFS can run in families, a [[Genetics of chronic fatigue syndrome|genetic link]] is a line of research recommended by the CDC.<ref name="causes"/><br />
Families, partners, and friends do not report contracting ME/CFS from someone with the disease nor do patients report passing it on to others.<ref>{{Cite web|url=http://forums.prohealth.com/forums/index.php?threads/is-cfs-contagious.189664/ | title = Is CFS contagious? {{!}} ProHealth Fibromyalgia, ME/CFS and Lyme Disease Forums|website=forums.prohealth.com|access-date=2019-02-13}}</ref> However, [[Rosemary Underhill|Underhill]] and O'Gorman (2006) researched 219 patients with ME/CFS, and concluded that close household contact and genetics were both risk factors for CFS, finding 3.2% of spouses/partners of those with CFS also had the illness.<ref name="UnderhillInfectious">{{Cite journal | last = Underhill | first = Rosemary A.  | last2 = O'Gorman |  first2 = Ruth| date = 2006-01-01 | title = Prevalence of Chronic Fatigue Syndrome and Chronic Fatigue Within Families of CFS Patients|url=https://doi.org/10.1300/J092v13n01_02|journal=Journal of Chronic Fatigue Syndrome|volume=13|issue=1|pages=3–13|doi=10.1300/J092v13n01_02|issn=1057-3321}}</ref> This was a higher prevalence than all genetic relatives except children of patients. Because ME/CFS can run in families, a [[Genetics of chronic fatigue syndrome|genetic link]] is a line of research recommended by the CDC.<ref name="causes"/><br />


[[Michael Sikora]] and collaborators at the [[Open Medicine Foundation]] hope that their research on the role of [[T cell]]s and immune-related [[Genetics of chronic fatigue syndrome|genes]] will help address "whether ME/CFS is an autoimmune or infectious disease, or simply an activation of the immune system".<ref name="omf-funded">{{Cite web|url=https://www.omf.ngo/2018/06/04/omf-funded-research/ | title = OMF funded research| date = Jun 4, 2018 | website = [[Open Medicine Foundation]]}}</ref>
[[Michael Sikora]] and collaborators at the [[Open Medicine Foundation]] hope that their research on the role of [[T cell]]s and immune-related [[Genetics of chronic fatigue syndrome|genes]] will help address "whether ME/CFS is an autoimmune or infectious disease, or simply an activation of the immune system".<ref name="omf-funded">{{Cite web|url=https://www.omf.ngo/2018/06/04/omf-funded-research/ | title = OMF funded research| date = Jun 4, 2018 | website = [[Open Medicine Foundation]]}}</ref>


====Blood donation and organ transplant====
====Blood donation and organ transplant====
[[Blood donation]] prohibition had been enacted in the [[United States]] (US) and [[United Kingdom]] (UK)</ref><ref name="post2010">{{Cite news|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|publisher=Washington Post|archive-url=|archive-date=|access-date=}}</ref> at one time due to the research of [[Xenotropic murine leukemia virus-related virus|XMRV]] as being the 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 = |authorlink= | date = 2010 | website = [[ME Association]]|language=en-US|archive-url=|archive-date=|access-date=2019-02-13}}</ref> and that patients carried the virus.<ref name="post2010" /> Two papers on XMRV were retracted as it was a laboratory contamination.<ref name="retraction2012">{{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=":622">{{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> The US American Red Cross and UK [[National Health Service]] Blood and Transplant sites no longer have statements barring transfusions or transplants for CFS.<ref name="redcross">{{Cite web|url=https://www.redcrossblood.org/faq.html#eligibility-health|website=aabb.org|access-date=2019-02-13 | title = Frequently Asked Questions|date = | last =  | first = |authorlink=|archive-url=|archive-date=|publisher=American Red Cross|at=|quote=Your search for “Chronic fatigue syndrome” returned no results.}}</ref><ref name="blood">{{Cite web|url=http://hospital.blood.co.uk/customer-services/blood-and-transplant-matters/ | title = Blood and transport matters|last= | first = |authorlink=| date = Feb 13, 2019 | website = hospital.blood.co.uk|archive-url=|archive-date=|access-date=|url-status=dead|publisher=NHSBT Hospitals and Science}}</ref> [[Australia]] has a prohibition on blood transfusion as a precaution.<ref name="blood-Aus">[https://www.donateblood.com.au/faq/chronic-fatigue-syndrome Chronic fatigue syndrome – I have/had chronic fatigue syndrome. Can I donate?]</ref>
[[Blood donation]] prohibition had been enacted in the [[United States]] (US) and [[United Kingdom]] (UK)</ref><ref name="post2010">{{Cite news | 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|publisher=Washington Post|archive-url=|archive-date=|access-date=}}</ref> at one time due to the research of [[Xenotropic murine leukemia virus-related virus|XMRV]] as being the 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 = |authorlink= | date = 2010 | website = [[ME Association]]|language=en-US|archive-url=|archive-date=|access-date=2019-02-13}}</ref> and that patients carried the virus.<ref name="post2010" /> Two papers on XMRV were retracted as it was a laboratory contamination.<ref name="retraction2012">{{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=":622">{{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> The US American Red Cross and UK [[National Health Service]] Blood and Transplant sites no longer have statements barring transfusions or transplants for CFS.<ref name="redcross">{{Cite web|url=https://www.redcrossblood.org/faq.html#eligibility-health|website=aabb.org|access-date=2019-02-13 | title = Frequently Asked Questions|date = | last =  | first = |authorlink=|archive-url=|archive-date=|publisher=American Red Cross|at=|quote=Your search for “Chronic fatigue syndrome” returned no results.}}</ref><ref name="blood">{{Cite web|url=http://hospital.blood.co.uk/customer-services/blood-and-transplant-matters/ | title = Blood and transport matters | last = | first = |authorlink=| date = Feb 13, 2019 | website = hospital.blood.co.uk|archive-url=|archive-date=|access-date=|url-status=dead|publisher=NHSBT Hospitals and Science}}</ref> [[Australia]] has a prohibition on blood transfusion as a precaution.<ref name="blood-Aus">[https://www.donateblood.com.au/faq/chronic-fatigue-syndrome Chronic fatigue syndrome – I have/had chronic fatigue syndrome. Can I donate?]</ref>


== Mini-Docs ==
== Mini-Docs ==
Line 71: Line 71:
[[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
[[What happens when you have a disease doctors can't diagnose - TED Talk (2016)|''What happens when you have a disease doctors can't diagnose'']] By [[Jennifer Brea|Jen Brea]]/TED


Five years ago, TED Fellow Jen Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her illness, whose root causes and physical effects we don't fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat.<ref>{{Cite web|url=https://www.youtube.com/watch?v=Fb3yp4uJhq0 | title = What happens when you have a disease doctors can't diagnose | date = Jan 17, 2017|access-date=|website=YouTube|last=Brea | first=Jennifer | authorlink=Jennifer Brea|archive-url=|archive-date=|publisher=TED}}</ref><ref>{{Cite web|url=https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose | title = What happens when you have a disease doctors can't diagnose | date = Jun 2016|access-date=|website=TED.com|archive-url=|archive-date=}}</ref>
Five years ago, TED Fellow Jen Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her illness, whose root causes and physical effects we don't fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat.<ref>{{Cite web|url=https://www.youtube.com/watch?v=Fb3yp4uJhq0 | title = What happens when you have a disease doctors can't diagnose | date = Jan 17, 2017|access-date=|website=YouTube | last = Brea | first=Jennifer | authorlink=Jennifer Brea|archive-url=|archive-date=|publisher=TED}}</ref><ref>{{Cite web|url=https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose | title = What happens when you have a disease doctors can't diagnose | date = Jun 2016|access-date=|website=TED.com|archive-url=|archive-date=}}</ref>


<embedvideo service="youtube" dimensions="400" alignment="right" container="frame" description="By Veronica Weber/Palo Alto Online (2015)">https://www.youtube.com/watch?v=9_HwOUiImvw</embedvideo>
<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>
Line 77: Line 77:
[[Invisible Illness - Stories of Chronic Fatigue Syndrome|''Invisible Illness - Stories of Chronic Fatigue Syndrome'']] By Veronica Weber/Palo Alto Online
[[Invisible Illness - Stories of Chronic Fatigue Syndrome|''Invisible Illness - Stories of Chronic Fatigue Syndrome'']] By Veronica Weber/Palo Alto Online


This mini documentary reveals 3 stories of people who have been impacted by [[Chronic Fatigue Syndrome]] - a little known disease that affects roughly 836,000-2.5 million people in the U.S. and receives little research funding. They share emotions of treating loved ones with the disease, their frustrations of being ignored by members of society and the healthcare industry and express hopes of treatment and research. Video by Veronica Weber/Palo Alto Online<ref>{{Cite web|url=https://www.youtube.com/watch?v=9_HwOUiImvw | title = Invisible Illness - Stories of Chronic Fatigue Syndrome | date = Jul 10, 2015|access-date=|website=YouTube|last=Weber |  first = Veronica | authorlink=|archive-url=|archive-date=|publisher=Palo Alto Online}}</ref>
This mini documentary reveals 3 stories of people who have been impacted by [[Chronic Fatigue Syndrome]] - a little known disease that affects roughly 836,000-2.5 million people in the U.S. and receives little research funding. They share emotions of treating loved ones with the disease, their frustrations of being ignored by members of society and the healthcare industry and express hopes of treatment and research. Video by Veronica Weber/Palo Alto Online<ref>{{Cite web|url=https://www.youtube.com/watch?v=9_HwOUiImvw | title = Invisible Illness - Stories of Chronic Fatigue Syndrome | date = Jul 10, 2015|access-date=|website=YouTube | last = Weber |  first = Veronica | authorlink=|archive-url=|archive-date=|publisher=Palo Alto Online}}</ref>


<embedvideo service="youtube" dimensions="400" alignment="right" container="frame" description="By Dr. David Kaufman/Unrest (2018)">https://www.youtube.com/watch?v=RC9TjgE_PlU</embedvideo>
<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>
Line 83: Line 83:
''Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome'' By Dr. [[David Kaufman]]/[[Unrest|''Unrest'']]
''Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome'' By Dr. [[David Kaufman]]/[[Unrest|''Unrest'']]


This video on the diagnosis and management of myalgic encephalomyelitis and chronic fatigue syndrome is '''part of the Unrest Continuing Education module''', made available through the American Medical Women's Association and Indiana University School of Medicine, and in partnership with #MEAction. US medical providers can visit: https://www.unrest.film/cme to register to watch [[Unrest]] online for free and receive Continuing Education credit.<ref>{{Cite web|url=https://www.youtube.com/watch?v=RC9TjgE_PlU | title = Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome | date = Oct 16, 2018|access-date=|website=YouTube | last = Kaufman  | first = David|authorlink=David Kaufman|archive-url=|archive-date=|publisher=Unrest Film}}</ref>
This video on the diagnosis and management of myalgic encephalomyelitis and chronic fatigue syndrome is '''part of the Unrest Continuing Education module''', made available through the American Medical Women's Association and Indiana University School of Medicine, and in partnership with #MEAction. US medical providers can visit: https://www.unrest.film/cme to register to watch [[Unrest]] online for free and receive Continuing Education credit.<ref>{{Cite web|url=https://www.youtube.com/watch?v=RC9TjgE_PlU | title = Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome | date = Oct 16, 2018|access-date=|website=YouTube | last = Kaufman  | first = David | authorlink=David Kaufman|archive-url=|archive-date=|publisher=Unrest Film}}</ref>


==Epidemiology ==
==Epidemiology ==
Line 90: Line 90:
*: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>
*: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]]
*[[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"/>
*: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 myalgic encephalomyelitis and chronic fatigue syndrome|Pediatric]]
:Pediatric ME/CFS is defined by the CDC<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/me-cfs-children/factsheet-healthcare-professional.html | title = Pediatric ME/CFS: Fact Sheet for Healthcare Professionals {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2017-10-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-10-13}}</ref> and the [[National Academy of Medicine]] (NAM)<ref name="IOM2015">{{Cite journal|last= | first = | date = 2015-03-16 | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|url=https://www.nap.edu/read/19012/chapter/8|journal=The National Academies Press|language=en|volume=|doi=10.17226/19012|issue=|via=|quote=}}</ref>{{Rp|181}} although it is usually diagnosed in adults.<ref name="what-is">{{Cite web|url=https://www.cdc.gov/me-cfs/about/index.html | title = What is ME/CFS? {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2019-01-18 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-01-31}}</ref> "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| date = 2016-06-25|work=Open Medicine Foundation|access-date=2018-08-11|language=en-US}}</ref> The prognosis in adolescents is considered to be better than in adults.<ref name="prognosis">{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/prognosis.html | title = Prognosis  {{!}} Presentation and Clinical Course {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2018-07-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-10-28}}</ref><ref name="pediatricprimer"/> Children are diagnosed with ME/CFS at three months of illness under SEID and CCC and ME is diagnosed immediately under [[International Consensus Criteria]].<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" />
:Pediatric ME/CFS is defined by the CDC<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/me-cfs-children/factsheet-healthcare-professional.html | title = Pediatric ME/CFS: Fact Sheet for Healthcare Professionals {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2017-10-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-10-13}}</ref> and the [[National Academy of Medicine]] (NAM)<ref name="IOM2015">{{Cite journal | last = | first = | date = 2015-03-16 | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|url=https://www.nap.edu/read/19012/chapter/8|journal=The National Academies Press|language=en|volume=|doi=10.17226/19012|issue=|via=|quote=}}</ref>{{Rp|181}} although it is usually diagnosed in adults.<ref name="what-is">{{Cite web|url=https://www.cdc.gov/me-cfs/about/index.html | title = What is ME/CFS? {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2019-01-18 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-01-31}}</ref> "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| date = 2016-06-25|work=Open Medicine Foundation|access-date=2018-08-11|language=en-US}}</ref> The prognosis in adolescents is considered to be better than in adults.<ref name="prognosis">{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/prognosis.html | title = Prognosis  {{!}} Presentation and Clinical Course {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2018-07-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-10-28}}</ref><ref name="pediatricprimer"/> Children are diagnosed with ME/CFS at three months of illness under SEID and CCC and ME is diagnosed immediately under [[International Consensus Criteria]].<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]]
*[[Prevalence of myalgic encephalomyelitis and chronic fatigue syndrome|Prevalence]]
:"Worldwide, there may be as many as 17 – 24 million people with ME/CFS."<ref>{{Cite web|url=https://ammes.org/how-many-people-have-mecfs/ | title = How Many People Have ME/CFS? – American ME and CFS Society|language=en-US|access-date=2019-01-31}}</ref> 25% of ME/CFS patients are [[Severe and very severe ME|housebound or bedbound]] at some point in their illness.<ref name="facts">{{Cite web|url=https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf | title = Myalgic Encelphalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts|last= | first = |authorlink= | date = 2015 | website = National Academies|archive-url=|archive-date=|access-date=}}</ref><ref name="IOM2015"/>{{Rp|32}} 90% of patients are undiagnosed.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/about/index.html | title = What is ME/CFS? {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2019-01-18 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-01-31}}</ref>
:"Worldwide, there may be as many as 17 – 24 million people with ME/CFS."<ref>{{Cite web|url=https://ammes.org/how-many-people-have-mecfs/ | title = How Many People Have ME/CFS? – American ME and CFS Society|language=en-US|access-date=2019-01-31}}</ref> 25% of ME/CFS patients are [[Severe and very severe ME|housebound or bedbound]] at some point in their illness.<ref name="facts">{{Cite web|url=https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf | title = Myalgic Encelphalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts | last = | first = |authorlink= | date = 2015 | website = National Academies|archive-url=|archive-date=|access-date=}}</ref><ref name="IOM2015"/>{{Rp|32}} 90% of patients are undiagnosed.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/about/index.html | title = What is ME/CFS? {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2019-01-18 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-01-31}}</ref>
*[[Prognosis for myalgic encephalomyelitis and chronic fatigue syndrome|Prognosis]]
*[[Prognosis for myalgic encephalomyelitis and chronic fatigue syndrome|Prognosis]]
:The prognosis for a patient diagnosed with ME/CFS isconsidered to be poor with only a minority (a median estimate of 5%) returning to pre-morbid levels of functioning.<ref name="Cairns2005">{{Cite journal|last=Cairns | first = R.  | last2 = Hotopf | first2 = M.  | date = Jan 2005 | title = A systematic review describing the prognosis of chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/15699087|journal=Occupational Medicine (Oxford, England)|volume=55|issue=1|pages=20–31|doi=10.1093/occmed/kqi013|issn=0962-7480|pmid=15699087}}</ref> The majority of patients remains significantly impaired. A substantial improvement however is noted in an estimated 40% of patients.<ref name="Cairns2005" /><ref>{{Cite journal | last= Joyce | first=J.  | last2 = Hotopf | first2 = M. | last3 = Wessely | first3 = S.  | date = Mar 1997 | title = The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review|url=https://www.ncbi.nlm.nih.gov/pubmed/9093600|journal=QJM: monthly journal of the Association of Physicians|volume=90|issue=3|pages=223–233|issn=1460-2725|pmid=9093600}}</ref>
:The prognosis for a patient diagnosed with ME/CFS isconsidered to be poor with only a minority (a median estimate of 5%) returning to pre-morbid levels of functioning.<ref name="Cairns2005">{{Cite journal | last = Cairns | first = R.  | last2 = Hotopf | first2 = M.  | date = Jan 2005 | title = A systematic review describing the prognosis of chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/15699087|journal=Occupational Medicine (Oxford, England)|volume=55|issue=1|pages=20–31|doi=10.1093/occmed/kqi013|issn=0962-7480|pmid=15699087}}</ref> The majority of patients remains significantly impaired. A substantial improvement however is noted in an estimated 40% of patients.<ref name="Cairns2005" /><ref>{{Cite journal | last= Joyce | first=J.  | last2 = Hotopf | first2 = M. | last3 = Wessely | first3 = S.  | date = Mar 1997 | title = The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review|url=https://www.ncbi.nlm.nih.gov/pubmed/9093600|journal=QJM: monthly journal of the Association of Physicians|volume=90|issue=3|pages=223–233|issn=1460-2725|pmid=9093600}}</ref>


== Symptoms ==
== Symptoms ==
Line 108: Line 108:
[[File:Brian vastag.png|thumb|left|[[Brian Vastag]] is an American and award-winning journalist and an ME/CFS patient that won a disability case against Prudential, proving that PEM is a severe symptom that keeps him from gainful employment]]
[[File:Brian vastag.png|thumb|left|[[Brian Vastag]] is an American and award-winning journalist and an ME/CFS patient that won a disability case against Prudential, proving that PEM is a severe symptom that keeps him from gainful employment]]


[[File:PEM1.JPG|300px|thumb|right|I think [https://twitter.com/hashtag/twofacesofme?f=tweets&vertical=default&src=hash #TwoFacesofME] is a really important hashtag. We’re only out and about at our best, and our (more frequent) worst often remains hidden. I’m convinced it’s why #[[ME/CFS|MEcfs]] research funding is so low - the problem isn’t visible enough. I’m seriously ill in both these photos.<ref>{{Cite web|url=https://twitter.com/JackCroxall/status/1085900441328803840 | title = I think #TwoFacesofME is a really important hashtag. We’re only out and about at our best, and our (more frequent) worst often remains hidden. I’m convinced it’s why #MEcfs research funding is so low - the problem isn’t visible enough. I’m seriously ill in both these photos.pic.twitter.com/hNjK5140kv|last=Croxall | first = Jack| date = 2019-01-17 | website = @JackCroxall|language=en|access-date=2019-01-17}}</ref>]]
[[File:PEM1.JPG|300px|thumb|right|I think [https://twitter.com/hashtag/twofacesofme?f=tweets&vertical=default&src=hash #TwoFacesofME] is a really important hashtag. We’re only out and about at our best, and our (more frequent) worst often remains hidden. I’m convinced it’s why #[[ME/CFS|MEcfs]] research funding is so low - the problem isn’t visible enough. I’m seriously ill in both these photos.<ref>{{Cite web|url=https://twitter.com/JackCroxall/status/1085900441328803840 | title = I think #TwoFacesofME is a really important hashtag. We’re only out and about at our best, and our (more frequent) worst often remains hidden. I’m convinced it’s why #MEcfs research funding is so low - the problem isn’t visible enough. I’m seriously ill in both these photos.pic.twitter.com/hNjK5140kv | last = Croxall | first = Jack| date = 2019-01-17 | website = @JackCroxall|language=en|access-date=2019-01-17}}</ref>]]


[[File:PEM4.JPG|300px|thumb|right|First photo, me in my [[Severe and very severe ME|wheelchair on a rare trip out]]. Second photo, the inevitable crash. Eye half closed, [[Speech difficulties|slurred speech]], [[Dizziness|dizzy]], weak, etc. #TwoFacesofME<ref>{{Cite web|url=https://twitter.com/hopeforMEyet/status/1085909800766980096 | title = First photo, me in my wheelchair on a rare trip out. Second photo, the inevitable crash. Eye half closed, slurred speech, dizzy, weak, etc. #TwoFacesofMEpic.twitter.com/P2OPnnpQvF | last = Karen| date = 2019-01-17 | website = @hopeforMEyet|language=en|access-date=2019-01-17}}</ref>]]
[[File: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>]]
Line 114: Line 114:
[[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>]]
[[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" /><ref name="symptoms"/><ref name="webmd">{{Cite web|url=https://www.webmd.com/chronic-fatigue-syndrome/symptoms-chronic-fatigue | title = What Are the Symptoms of Chronic Fatigue Syndrome|last= | first = |authorlink=| date = |website=WebMD|language=en|archive-url=|archive-date=|access-date=2019-01-24}}</ref> there is a payback of worsening [[List of symptoms in ME CFS|ME/CFS symptoms]] which can be [[Delayed onset of post-exertional symptoms|delayed 24-72 hours, or more]].<ref name="symptoms"/><ref name="Lindheimer2017">{{Cite journal|last=Lindheimer | first=Jacob B.  | last2 = Meyer | first2=Jacob D. | last3 = Stegner | first3=Aaron J. | last4 = Dougherty | first4 = Ryan J. | last5 = Van Riper | first5=Stephanie M. | last6 = Shields | first6=Morgan | last7 = Reisner | first7 = Amanda | last8 = Shukla | first8 = Sanjay K. | last9 = Light | first9 = Alan R.  | date = 2017-04-03 | title = Symptom variability following acute exercise in myalgic encephalomyelitis/chronic fatigue syndrome: a perspective on measuring post-exertion malaise|url=https://www.tandfonline.com/doi/full/10.1080/21641846.2017.1321166|journal = Fatigue: Biomedicine, Health & Behavior |language=en|volume=5|issue=2 | pages = 69–88|doi=10.1080/21641846.2017.1321166|issn=2164-1846}}</ref><ref name="Yoshiuchi2007">{{Cite journal|last=Yoshiuchi | first = Kazuhiro | last2 = Cook | first2 = Dane B. | last3 = Ohashi | first3 = Kyoko | last4 = Kumano | first4 = Hiroaki | last5 = Kuboki|first5=Tomifusa | last6 = Yamamoto | first6 = Yoshiharu | last7 = Natelson | first7 = Benjamin H.  | date = 2007-12-05 | title = A real-time assessment of the effect of exercise in chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/17655887|journal=Physiology & Behavior|volume=92|issue=5 | pages = 963–968|doi=10.1016/j.physbeh.2007.07.001|issn=0031-9384|pmc=2170105|pmid=17655887}}</ref> and can last 24 hours and even days, weeks, or months.<ref name="Primer2014"/><ref name="VanNess2010">{{Cite journal | last = VanNess | first = J. Mark | last2 = Stevens |  first2 = Staci R. | last3 = Bateman |  first3 = Lucinda | last4 = Stiles | first4=Travis L. | last5 = Snell|first5=Christopher R.  | date = Feb 2010 | title = Postexertional malaise in women with chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/20095909|journal=Journal of Women's Health (2002)|volume=19|issue=2|pages=239–244|doi=10.1089/jwh.2009.1507|issn=1931-843X|pmid=20095909}}</ref><ref>[https://www.fda.gov/downloads/forindustry/userfees/prescriptiondruguserfee/ucm368806.pdf The Voice of the Patient.] A series of reports from the U.S. Food and Drug Administration's (FDA’s) Patient-Focused Drug Development Initiative. September 2013</ref> The patient will experience even greater fatigue as well as exasperate the [[flu-like symptoms]] and body [[pain]]. Every patient experiences different symptoms and symptom severity from different activities and exertion output according to how sick he or she is with the disease.<ref name="whatis" /><ref name="webmd" /> Regarding PEM the [[CFIDS Association of America]] states:
*[[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" /><ref name="symptoms"/><ref name="webmd">{{Cite web|url=https://www.webmd.com/chronic-fatigue-syndrome/symptoms-chronic-fatigue | title = What Are the Symptoms of Chronic Fatigue Syndrome | last = | first = |authorlink=| date = |website=WebMD|language=en|archive-url=|archive-date=|access-date=2019-01-24}}</ref> there is a payback of worsening [[List of symptoms in ME CFS|ME/CFS symptoms]] which can be [[Delayed onset of post-exertional symptoms|delayed 24-72 hours, or more]].<ref name="symptoms"/><ref name="Lindheimer2017">{{Cite journal | last = Lindheimer | first=Jacob B.  | last2 = Meyer | first2=Jacob D. | last3 = Stegner | first3=Aaron J. | last4 = Dougherty | first4 = Ryan J. | last5 = Van Riper | first5=Stephanie M. | last6 = Shields | first6=Morgan | last7 = Reisner | first7 = Amanda | last8 = Shukla | first8 = Sanjay K. | last9 = Light | first9 = Alan R.  | date = 2017-04-03 | title = Symptom variability following acute exercise in myalgic encephalomyelitis/chronic fatigue syndrome: a perspective on measuring post-exertion malaise|url=https://www.tandfonline.com/doi/full/10.1080/21641846.2017.1321166|journal = Fatigue: Biomedicine, Health & Behavior |language=en|volume=5|issue=2 | pages = 69–88|doi=10.1080/21641846.2017.1321166|issn=2164-1846}}</ref><ref name="Yoshiuchi2007">{{Cite journal | last = Yoshiuchi | first = Kazuhiro | last2 = Cook | first2 = Dane B. | last3 = Ohashi | first3 = Kyoko | last4 = Kumano | first4 = Hiroaki | last5 = Kuboki | first5 = Tomifusa | last6 = Yamamoto | first6 = Yoshiharu | last7 = Natelson | first7 = Benjamin H.  | date = 2007-12-05 | title = A real-time assessment of the effect of exercise in chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/17655887|journal=Physiology & Behavior|volume=92|issue=5 | pages = 963–968|doi=10.1016/j.physbeh.2007.07.001|issn=0031-9384|pmc=2170105|pmid=17655887}}</ref> and can last 24 hours and even days, weeks, or months.<ref name="Primer2014"/><ref name="VanNess2010">{{Cite journal | last = VanNess | first = J. Mark | last2 = Stevens |  first2 = Staci R. | last3 = Bateman |  first3 = Lucinda | last4 = Stiles | first4=Travis L. | last5 = Snell | first5 = Christopher R.  | date = Feb 2010 | title = Postexertional malaise in women with chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/20095909|journal=Journal of Women's Health (2002)|volume=19|issue=2|pages=239–244|doi=10.1089/jwh.2009.1507|issn=1931-843X|pmid=20095909}}</ref><ref>[https://www.fda.gov/downloads/forindustry/userfees/prescriptiondruguserfee/ucm368806.pdf The Voice of the Patient.] A series of reports from the U.S. Food and Drug Administration's (FDA’s) Patient-Focused Drug Development Initiative. September 2013</ref> The patient will experience even greater fatigue as well as exasperate the [[flu-like symptoms]] and body [[pain]]. Every patient experiences different symptoms and symptom severity from different activities and exertion output according to how sick he or she is with the disease.<ref name="whatis" /><ref name="webmd" /> Regarding PEM the [[CFIDS Association of America]] states:
<blockquote>This is a term which describes a symptom in which exercise or exertion can bring on [[malaise]] (illness). In the case of people with ME/CFS, malaise often occurs during a period some 24-72 hours after exertion. For example, in some cases, a short walk can worsen ME/CFS symptoms two days later. This lack of understanding about the delayed onset of symptoms has, in the past, made it harder to test for ME/CFS. Follow up tests, taken less than 24 hours after an initial exercise test, may show that the patient can still perform activities at the same level (before post exertional malaise has a chance to take hold).<ref>[http://www.whathealth.com/awareness/event/internationalcfsmeawarenessday.html What Health - International CFS/ME Awareness Day 2017 - CFIDS Association of America]</ref></blockquote>
<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]]
*[[chronic fatigue]]
Line 153: Line 153:
[[File:Ampligen.jpg|200px|thumb|right|Ampligen]]
[[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>
Two treatments that have garnered much attention are [[Ampligen]], produced by [[AIM ImmunoTech]] (formerly Hemispherx Biopharma), and [[Rituximab]]. Many people have reported enormous improvements from Ampligen, and a few recovered but relapsed when they stopped taking it.<ref name="TownCFS">{{Cite web|url=https://www.newyorker.com/culture/personal-history/a-town-for-people-with-chronic-fatigue  | title = A Town for People with Chronic Fatigue Syndrome|website=New Yorker| date = Sep 3, 2019 | first = Mike | last = Mariani|access-date=2022-04-13}}</ref>


Attempts to obtain FDA approval for Ampligen in the US have failed, but it is available to some people on [[compassionate use]].<ref name="experimental">{{Cite web|url=https://ammes.org/experimental-treatments/ | title = Experimental treatments |last= | first = | date = |website=[[American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society]]|language=en-US|archive-url=|archive-date=|access-date=2021-03-18}}</ref> [[Argentina]] approved the use of Ampligen for [[Severe and very severe ME|severe ME/CFS]] in 2016.<ref>{{Cite news|url=http://www.globenewswire.com/news-release/2016/08/23/866212/0/en/Hemispherx-Biopharma-Announces-Major-Breakthrough-Approval-for-Commercial-Sale-of-Rintatolimod-U-S-Tradename-Ampligen-to-Treat-Severe-Cases-of-Myalgic-Encephalomyelitis-Chronic-Fat.html | title = Hemispherx Biopharma Announces Major Breakthrough: Approval for Commercial Sale of Rintatolimod (U.S. Tradename: Ampligen®) to Treat Severe Cases of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in the Argentine Republic|last=Hemispherx Biopharma, Inc.  | date = Aug 23, 2016|work=GlobeNewswire News Room|access-date=2018-08-13|archive-url=|archive-date=|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=|type=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 AIM ImmunoTech announced the expansion of its US [[compassionate use]] 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><ref>{{Cite web|url=https://finance.yahoo.com/news/hemispherx-biopharma-inc-announces-advancement-133000883.html | title = Hemispherx Biopharma Inc. Announces Advancement in Expanded Access Program for Ampligen in the Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|last= | first = |authorlink=| date = Jan 2, 2019 | website = finance.yahoo.com|publisher=GlobeNewswire|language=en-US|archive-url=|archive-date=|access-date=2019-02-10}}</ref>
Attempts to obtain FDA approval for Ampligen in the US have failed, but it is available to some people on [[compassionate use]].<ref name="experimental">{{Cite web|url=https://ammes.org/experimental-treatments/ | title = Experimental treatments | last = | first = | date = |website=[[American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society]]|language=en-US|archive-url=|archive-date=|access-date=2021-03-18}}</ref> [[Argentina]] approved the use of Ampligen for [[Severe and very severe ME|severe ME/CFS]] in 2016.<ref>{{Cite news | url=http://www.globenewswire.com/news-release/2016/08/23/866212/0/en/Hemispherx-Biopharma-Announces-Major-Breakthrough-Approval-for-Commercial-Sale-of-Rintatolimod-U-S-Tradename-Ampligen-to-Treat-Severe-Cases-of-Myalgic-Encephalomyelitis-Chronic-Fat.html | title = Hemispherx Biopharma Announces Major Breakthrough: Approval for Commercial Sale of Rintatolimod (U.S. Tradename: Ampligen®) to Treat Severe Cases of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in the Argentine Republic | last = Hemispherx Biopharma, Inc.  | date = Aug 23, 2016|work=GlobeNewswire News Room|access-date=2018-08-13|archive-url=|archive-date=|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=|type=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 AIM ImmunoTech announced the expansion of its US [[compassionate use]] 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><ref>{{Cite web|url=https://finance.yahoo.com/news/hemispherx-biopharma-inc-announces-advancement-133000883.html | title = Hemispherx Biopharma Inc. Announces Advancement in Expanded Access Program for Ampligen in the Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | last = | first = |authorlink=| date = Jan 2, 2019 | website = finance.yahoo.com|publisher=GlobeNewswire|language=en-US|archive-url=|archive-date=|access-date=2019-02-10}}</ref>


[[Rituximab]], a lymphoma drug, had shown promising results in initial trials in Norway,<ref>{{Cite journal | last = Fluge | first=Øystein | author-link=Øystein Fluge | last2 = Risa | first2=Kristin | author-link2= | last3 = Lunde | first3=Sigrid | authorlink3 =  | last4 = Alme | first4=Kine | authorlink4 =  | last5 = Rekeland | first5=Ingrid Gurvin | authorlink5 =  | last6 = Sapkota | first6=Dipak  | authorlink6 =  | last7 = Kristoffersen | first7 = Einar Kleboe | last8 = Sørland | first8 = Kari | last9 = Bruland | first9 = Ove | date = 2015-07-01|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 profilethat 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>  
[[Rituximab]], a lymphoma drug, had shown promising results in initial trials in Norway,<ref>{{Cite journal | last = Fluge | first=Øystein | author-link=Øystein Fluge | last2 = Risa | first2=Kristin | author-link2= | last3 = Lunde | first3=Sigrid | authorlink3 =  | last4 = Alme | first4=Kine | authorlink4 =  | last5 = Rekeland | first5=Ingrid Gurvin | authorlink5 =  | last6 = Sapkota | first6=Dipak  | authorlink6 =  | last7 = Kristoffersen | first7 = Einar Kleboe | last8 = Sørland | first8 = Kari | last9 = Bruland | first9 = Ove | date = 2015-07-01|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 profilethat 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>  


[[Jarred Younger]] announced in early 2016 that he will be undertaking a trial of [[low dose naltrexone]] (LDN) in ME/CFS.<ref>{{Cite news|url=https://www.healthrising.org/blog/2016/02/04/low-dose-naltrexone-combo-chronic-fatigue/ | title = Low Dose Naltrexone Drug Combination Proposed for Chronic Fatigue Syndrome (ME/CFS) | last = Johnson | first =Cort | date = 2016-02-04|work=Health Rising|access-date=2018-09-07|archive-url=|archive-date=|language=en-US}}</ref><ref>{{Cite news|url=https://cas.uab.edu/younger/2017/02/ldn-chronic-fatigue-syndrome-clinical-trial/ | title = LDN Chronic Fatigue Syndrome Clinical Trial - Neuroinflammation, Pain and Fatigue Laboratory| date = 2017-02-23|work=Neuroinflammation, Pain and Fatigue Laboratory|access-date=2018-09-07|language=en-US}}</ref>
[[Jarred Younger]] announced in early 2016 that he will be undertaking a trial of [[low dose naltrexone]] (LDN) in ME/CFS.<ref>{{Cite news | url=https://www.healthrising.org/blog/2016/02/04/low-dose-naltrexone-combo-chronic-fatigue/ | title = Low Dose Naltrexone Drug Combination Proposed for Chronic Fatigue Syndrome (ME/CFS) | last = Johnson | first =Cort | date = 2016-02-04|work=Health Rising|access-date=2018-09-07|archive-url=|archive-date=|language=en-US}}</ref><ref>{{Cite news | url=https://cas.uab.edu/younger/2017/02/ldn-chronic-fatigue-syndrome-clinical-trial/ | title = LDN Chronic Fatigue Syndrome Clinical Trial - Neuroinflammation, Pain and Fatigue Laboratory| date = 2017-02-23|work=Neuroinflammation, Pain and Fatigue Laboratory|access-date=2018-09-07|language=en-US}}</ref>


=== Treating other conditions ===
=== Treating other conditions ===
Different forms of [[orthostatic intolerance|OI]] are treated with beta-blockers (Metopropol), [[Fludrocortisone]] (Florinef), and [[Mestinon|Pyridostigmine]].<ref>{{Cite news|url=https://www.prohealth.com/library/evergreen_pages/pharmaceutical-medications-for-chronic-fatigue-syndrome-myalgic-encephalomyelitis | title = Pharmaceutical Medications for Chronic Fatigue Syndrome & Myalgic Encephalomyelitis - Prohealth|work=Prohealth|access-date=2018-08-28|language=en-US}}</ref> When treating other diseases, illnesses, and conditions, and ME/CFS comorbids and 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=":05">{{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=":05" /> For instance, tricyclic drugs can improve mood and help with sleep and pain. However, in some in can worsen OI.<ref name=":05" />
Different forms of [[orthostatic intolerance|OI]] are treated with beta-blockers (Metopropol), [[Fludrocortisone]] (Florinef), and [[Mestinon|Pyridostigmine]].<ref>{{Cite news | url=https://www.prohealth.com/library/evergreen_pages/pharmaceutical-medications-for-chronic-fatigue-syndrome-myalgic-encephalomyelitis | title = Pharmaceutical Medications for Chronic Fatigue Syndrome & Myalgic Encephalomyelitis - Prohealth|work=Prohealth|access-date=2018-08-28|language=en-US}}</ref> When treating other diseases, illnesses, and conditions, and ME/CFS comorbids and 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=":05">{{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=":05" /> For instance, tricyclic drugs can improve mood and help with sleep and pain. However, in some in can worsen OI.<ref name=":05" />


===Controversy===
===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 pools into her legs]].
[[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 pools into her legs]].
Psychiatry has taken an [[Psychologization|inappropriate lead]] and treatment path for an organic biological disease, although this is now changing. In the UK, [[graded exercise therapy]] (GET) and [[cognitive behavioral therapy]] (CBT) were employed by ME/CFS Clinics until 2021.<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> Exercise or stepped increases in activity exacerbates symptoms and were found to harm most patients, so this treatment is now advised against.<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 name="ng206"/> [[Depression]] and anxiety drugs have been utilized, but are ineffective.<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 - DoctorMyhill|last=Myhill | first = Sarah| date = |website=drmyhill.co.uk|language=en|archive-url=|archive-date=|access-date=2018-09-07}}</ref>
Psychiatry has taken an [[Psychologization|inappropriate lead]] and treatment path for an organic biological disease, although this is now changing. In the UK, [[graded exercise therapy]] (GET) and [[cognitive behavioral therapy]] (CBT) were employed by ME/CFS Clinics until 2021.<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> Exercise or stepped increases in activity exacerbates symptoms and were found to harm most patients, so this treatment is now advised against.<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 name="ng206"/> [[Depression]] and anxiety drugs have been utilized, but are ineffective.<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 - DoctorMyhill | last = Myhill | first = Sarah| date = |website=drmyhill.co.uk|language=en|archive-url=|archive-date=|access-date=2018-09-07}}</ref>


Treating a biological disease as a mental illness is not cost effective.  The drugs are inexpensive 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 illness kick in [[ethical issues|stopping any payment]] or shortening the payout time-frame.<ref>{{Cite web|url=http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ | title = Trial by Error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really? | last = Tuller | first=David| date = Nov 17, 2015 | website = [[Virology blog]]|language=en-US|archive-url=|archive-date=|access-date=2018-09-07}}</ref><ref>{{Cite web|url=https://www.psychologytoday.com/blog/turning-straw-gold/201212/physical-illnesses-may-soon-be-labeled-mental-disorders | title = Physical Illnesses May Soon Be Labeled “Mental Disorders”|last=Bernhard | first=Toni | date = Dec 27, 2012|website=Psychology Today|language=en-US|archive-url=|archive-date=|access-date=2018-09-07}}</ref><ref>{{Cite web|url=http://www.theguardian.com/society/2004/apr/28/equality.mentalhealth | title = People with mental illness face widespread discrimination|last=Batty | first = David| date = 2004-04-28 | website = the Guardian|language=en|access-date=2018-09-07}}</ref><ref>{{Cite news|url=http://thoughtsaboutme.com/2016/03/21/keep-an-eye-on-your-walitt-nih-study-poses-dramatic-risk-to-long-term-disability-benefits/ | title = Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability Benefits| date = 2016-03-21|work=Thoughts About M.E.|access-date=2018-09-07|language=en-US}}</ref>   
Treating a biological disease as a mental illness is not cost effective.  The drugs are inexpensive 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 illness kick in [[ethical issues|stopping any payment]] or shortening the payout time-frame.<ref>{{Cite web|url=http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ | title = Trial by Error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really? | last = Tuller | first=David| date = Nov 17, 2015 | website = [[Virology blog]]|language=en-US|archive-url=|archive-date=|access-date=2018-09-07}}</ref><ref>{{Cite web|url=https://www.psychologytoday.com/blog/turning-straw-gold/201212/physical-illnesses-may-soon-be-labeled-mental-disorders | title = Physical Illnesses May Soon Be Labeled “Mental Disorders” | last = Bernhard | first=Toni | date = Dec 27, 2012|website=Psychology Today|language=en-US|archive-url=|archive-date=|access-date=2018-09-07}}</ref><ref>{{Cite web|url=http://www.theguardian.com/society/2004/apr/28/equality.mentalhealth | title = People with mental illness face widespread discrimination | last = Batty | first = David| date = 2004-04-28 | website = the Guardian|language=en|access-date=2018-09-07}}</ref><ref>{{Cite news | url=http://thoughtsaboutme.com/2016/03/21/keep-an-eye-on-your-walitt-nih-study-poses-dramatic-risk-to-long-term-disability-benefits/ | title = Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability Benefits| date = 2016-03-21|work=Thoughts About M.E.|access-date=2018-09-07|language=en-US}}</ref>   


==== Graded exercise therapy & Cognitive behavioral therapy ====
==== Graded exercise therapy & Cognitive behavioral therapy ====
Line 188: Line 188:
=== Working with government to move forward ===
=== 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 [[NIH]], the [[Centers for Disease Control and Prevention|CDC]] reinstating and increasing funding and education based on [[IOM]] recommendations and the [[HHS]] funding to develop Centers of Excellence.<ref>{{Cite news|url=http://www.meaction.net/2016/03/16/meaction-meets-with-senate-staffers/ | title = #MEAction meets with Senate staffers - #MEAction| date = 2016-03-16|work=#MEAction|access-date=2018-09-07|language=en-US}}</ref> #[[MEAction]] reports on this ongoing process.
Advocates met with senate staffers the week of March 16, 2016, and discussed research and drug development by the [[NIH]], the [[Centers for Disease Control and Prevention|CDC]] reinstating and increasing funding and education based on [[IOM]] recommendations and the [[HHS]] funding to develop Centers of Excellence.<ref>{{Cite news | url=http://www.meaction.net/2016/03/16/meaction-meets-with-senate-staffers/ | title = #MEAction meets with Senate staffers - #MEAction| date = 2016-03-16|work=#MEAction|access-date=2018-09-07|language=en-US}}</ref> #[[MEAction]] reports on this ongoing process.


====CDC Website updates====
====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>{{Cite web|url=http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/ | title = Trial By Error: The CDC Drops CBT/GET | last = Tuller | first=David| date = Jul 10, 2017 | website = [[Virology blog]]|language=en-US|archive-url=|archive-date=|access-date=2018-09-07}}</ref><ref>{{Cite web|url=https://www.cdc.gov/me-cfs/treatment/index.html | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) {{!}} 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=2018-09-07}}</ref>
*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>{{Cite web|url=http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/ | title = Trial By Error: The CDC Drops CBT/GET | last = Tuller | first=David| date = Jul 10, 2017 | website = [[Virology blog]]|language=en-US|archive-url=|archive-date=|access-date=2018-09-07}}</ref><ref>{{Cite web|url=https://www.cdc.gov/me-cfs/treatment/index.html | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) {{!}} 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=2018-09-07}}</ref>


*Jul 12, 2018, the "Information for Healthcare Providers" tab and its sub-tabs were updated.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/index.html | title = Information for Healthcare Providers {{!}} ME/CFS| 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/media/releases/2018/a0712-new-website-me-cfs.html | title = New ME/CFS Web Content for Healthcare Providers {{!}} CDC Online Newsroom| date = 2018-07-12|website=[[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-09-07}}</ref>
*Jul 12, 2018, the "Information for Healthcare Providers" tab and its sub-tabs were updated.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/index.html | title = Information for Healthcare Providers {{!}} ME/CFS| 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/media/releases/2018/a0712-new-website-me-cfs.html | title = New ME/CFS Web Content for Healthcare Providers {{!}} CDC Online Newsroom| date = 2018-07-12|website=[[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-09-07}}</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>
*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>


'''MEAction input'''
'''MEAction input'''
*Jul 29, 2018, [https://www.meaction.net/2018/07/29/cdc-revises-its-information-on-me/ CDC Revises its Information on ME]<ref>{{Cite news|url=https://www.meaction.net/2018/07/29/cdc-revises-its-information-on-me/ | title = CDC Revises Its Information on ME - #MEAction|last=Seltzer | first=Jaime | date = 2018-07-29|work=#MEAction|access-date=2018-09-07|archive-url=|archive-date=|language=en-US}}</ref> #[[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.
*Jul 29, 2018, [https://www.meaction.net/2018/07/29/cdc-revises-its-information-on-me/ CDC Revises its Information on ME]<ref>{{Cite news | url=https://www.meaction.net/2018/07/29/cdc-revises-its-information-on-me/ | title = CDC Revises Its Information on ME - #MEAction | last = Seltzer | first=Jaime | date = 2018-07-29|work=#MEAction|access-date=2018-09-07|archive-url=|archive-date=|language=en-US}}</ref> #[[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 ==
== Recommended viewing ==
Line 232: Line 232:
:*[https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts]<ref name="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]<ref name="facts"/> From the [[Institute of Medicine report]]. (2015)


:*[https://www.nap.edu/resource/19012/MECFS_ReportBrief.pdf Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness - Report brief]<ref name="brief">{{Cite web|url=https://www.nap.edu/resource/19012/MECFS_ReportBrief.pdf  | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness {{!}} Report Brief|last= | first = | date = Feb 2015 | website = National Academies|archive-url=|archive-date=|access-date=}}</ref> 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]<ref name="brief">{{Cite web|url=https://www.nap.edu/resource/19012/MECFS_ReportBrief.pdf  | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness {{!}} Report Brief | last = | first = | date = Feb 2015 | website = National Academies|archive-url=|archive-date=|access-date=}}</ref> Report Brief on the Institute of Medicine report. (2015)


==== ME/CFS research foundations ====
==== ME/CFS research foundations ====
Line 251: Line 251:


:[[Emerge Australia]]
:[[Emerge Australia]]
:*[https://emerge.org.au/about-mecfs/diagnosis/mecfs/ What is ME/CFS?]<ref>{{Cite news|url=https://emerge.org.au/mecfs/ | title = What is ME/CFS? - Emerge Australia|work=Emerge Australia|access-date=2018-09-07|language=en-US}}</ref>
:*[https://emerge.org.au/about-mecfs/diagnosis/mecfs/ What is ME/CFS?]<ref>{{Cite news | url=https://emerge.org.au/mecfs/ | title = What is ME/CFS? - Emerge Australia|work=Emerge Australia|access-date=2018-09-07|language=en-US}}</ref>


:'''UK'''
:'''UK'''
Line 259: Line 259:


:[[Tymes Trust]] (Pediatric)
:[[Tymes Trust]] (Pediatric)
:*[http://www.tymestrust.org/pdfs/mecfsseid.pdf Pediatric ME, CFS, SEID for Families and their GPs]<ref>{{Cite web|url=https://www.tymestrust.org/pdfs/mecfsseid.pdf | title = Paediatric ME, CFS, SEID for Families and their GPs|last= | first = | date = |website=tymestrust.org|publisher=The Young ME Sufferers Trust|archive-url=|archive-date=|access-date=}}</ref> (2016)
:*[http://www.tymestrust.org/pdfs/mecfsseid.pdf Pediatric ME, CFS, SEID for Families and their GPs]<ref>{{Cite web|url=https://www.tymestrust.org/pdfs/mecfsseid.pdf | title = Paediatric ME, CFS, SEID for Families and their GPs | last = | first = | date = |website=tymestrust.org|publisher=The Young ME Sufferers Trust|archive-url=|archive-date=|access-date=}}</ref> (2016)


:'''US'''
:'''US'''
Line 266: Line 266:


:[[Solve ME/CFS]]
:[[Solve ME/CFS]]
:*[https://drive.google.com/file/d/0B6UlcglLsyp7WkgxbmdaWXVhbVU/view What, Exactly, is a Biomarker Anyway? And Why Don't We Have One for ME/CFS?]<ref>{{Cite web|url=https://drive.google.com/file/d/0B6UlcglLsyp7WkgxbmdaWXVhbVU/view | title = What, Exactly, Is a Biomarker Anyway? And Why Don't We Have One for ME/CFS?|last= | first = | date = |website=drive.google.com|publisher=Solve ME/CFS Initiative|archive-url=|archive-date=|access-date=|authorlink=}}</ref>  
:*[https://drive.google.com/file/d/0B6UlcglLsyp7WkgxbmdaWXVhbVU/view What, Exactly, is a Biomarker Anyway? And Why Don't We Have One for ME/CFS?]<ref>{{Cite web|url=https://drive.google.com/file/d/0B6UlcglLsyp7WkgxbmdaWXVhbVU/view | title = What, Exactly, Is a Biomarker Anyway? And Why Don't We Have One for ME/CFS? | last = | first = | date = |website=drive.google.com|publisher=Solve ME/CFS Initiative|archive-url=|archive-date=|access-date=|authorlink=}}</ref>  


:*[http://solvecfs.org/what-is-mecfs/ Get the Facts about ME/CFS]<ref>{{Cite news|url=https://solvecfs.org/what-is-mecfs/ | title = Get the Facts about ME/CFS - Solve ME/CFS Initiative|work=Solve ME/CFS Initiative|access-date=2018-09-07|language=en-US}}</ref> (2016)
:*[http://solvecfs.org/what-is-mecfs/ Get the Facts about ME/CFS]<ref>{{Cite news | url=https://solvecfs.org/what-is-mecfs/ | title = Get the Facts about ME/CFS - Solve ME/CFS Initiative|work=Solve ME/CFS Initiative|access-date=2018-09-07|language=en-US}}</ref> (2016)


:*[http://solvecfs.org/wp-content/uploads/2013/06/SMCI_MECFS_FactSheet.pdf What is ME/CFS?]<ref>{{Cite web|url=http://solvecfs.org/wp-content/uploads/2013/06/SMCI_MECFS_FactSheet.pdf | title = What is ME/CFS?|last= | first =  | date = 2013 | website = solvecfs.org|archive-url=|archive-date=|access-date=}}</ref> (2013)
:*[http://solvecfs.org/wp-content/uploads/2013/06/SMCI_MECFS_FactSheet.pdf What is ME/CFS?]<ref>{{Cite web|url=http://solvecfs.org/wp-content/uploads/2013/06/SMCI_MECFS_FactSheet.pdf | title = What is ME/CFS? | last = | first =  | date = 2013 | website = solvecfs.org|archive-url=|archive-date=|access-date=}}</ref> (2013)


:'''International'''  
:'''International'''  
Line 276: Line 276:
:*[https://drive.google.com/file/d/1h_ZwdR4567k-mSoWahnC_id0F_fAA3Fb/view Caring for People with Myalgic Encephalomyelitis]<ref name=":14" /> (2018) Guide for Caretakers
:*[https://drive.google.com/file/d/1h_ZwdR4567k-mSoWahnC_id0F_fAA3Fb/view Caring for People with Myalgic Encephalomyelitis]<ref name=":14" /> (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)]<ref>{{Cite web|url=http://www.meaction.net/wp-content/uploads/2015/10/ME-Facts-v2-1.pdf | title = Facts about Myalgic Encephalomyelitis (ME) - (Also called chronic fatigue syndrome or CFS)|last= | first = | date = |website=MEAction|archive-url=|archive-date=|access-date=}}</ref> (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)]<ref>{{Cite web|url=http://www.meaction.net/wp-content/uploads/2015/10/ME-Facts-v2-1.pdf | title = Facts about Myalgic Encephalomyelitis (ME) - (Also called chronic fatigue syndrome or CFS) | last = | first = | date = |website=MEAction|archive-url=|archive-date=|access-date=}}</ref> (2015)


:*[http://www.meaction.net/reports-and-fact-sheets/? Reports and Fact Sheets]<ref>{{Cite web|url=https://www.meaction.net/resources/  | title = Learn about ME. Find educational tools for your advocacy. | last = | first =  | date = |website=meaction.net|archive-url=|archive-date=|access-date=}}</ref> (2015)
:*[http://www.meaction.net/reports-and-fact-sheets/? Reports and Fact Sheets]<ref>{{Cite web|url=https://www.meaction.net/resources/  | title = Learn about ME. Find educational tools for your advocacy. | last = | first =  | date = |website=meaction.net|archive-url=|archive-date=|access-date=}}</ref> (2015)
Line 283: Line 283:


:[https://rarediseases.org/ National Organization for Rare Disorders] (NORD)  
:[https://rarediseases.org/ National Organization for Rare Disorders] (NORD)  
:*[https://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/ Myalgic Encephalomyelitis]<ref>{{Cite news|url=https://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/ | title = Myalgic Encephalomyelitis - NORD (National Organization for Rare Disorders)|work=NORD (National Organization for Rare Disorders)|access-date=2018-09-07|language=en-US}}</ref>
:*[https://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/ Myalgic Encephalomyelitis]<ref>{{Cite news | url=https://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/ | title = Myalgic Encephalomyelitis - NORD (National Organization for Rare Disorders)|work=NORD (National Organization for Rare Disorders)|access-date=2018-09-07|language=en-US}}</ref>


==== 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?]<ref>{{Cite news|url=https://thirdage.com/what-do-you-do-when-a-loved-one-becomes-chronically-ill/ | title = What Do You Do When a Loved One Becomes Chronically Ill? | last= Jackson | first = Suzan| date = 2016-10-28|work=thirdAGE|access-date=2018-09-07|archive-url=|archive-date=|language=en-US}}</ref>
:*[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?]<ref>{{Cite news | url=https://thirdage.com/what-do-you-do-when-a-loved-one-becomes-chronically-ill/ | title = What Do You Do When a Loved One Becomes Chronically Ill? | last= Jackson | first = Suzan| date = 2016-10-28|work=thirdAGE|access-date=2018-09-07|archive-url=|archive-date=|language=en-US}}</ref>


== Research avenues ==
== Research avenues ==
Line 306: Line 306:
*[[Sophia Mirza]]'s death is attributed to CFS.
*[[Sophia Mirza]]'s death is attributed to CFS.


In the UK, United States, and Australia there are further reports that loved ones have died due to ME/CFS.<ref name="NewScientist2006">{{Cite news|url=https://www.newscientist.com/letter/mg19125620-600-not-sadly-the-first/ | title = Not, sadly, the first|last=Senior |  first = Richard| date = Jul 26, 2006|work=New Scientist|access-date=2018-09-07|archive-url=|archive-date=|language=en-US}}</ref><ref name="NewScientist2006-2">{{Cite news|url=https://www.newscientist.com/article/dn9342-first-official-uk-death-from-chronic-fatigue-syndrome/ | title = First official UK death from chronic fatigue syndrome|last=Hooper |  first = Rowan| date = Jun 16, 2006|work=New Scientist|access-date=2018-09-07|archive-url=|archive-date=|language=en-US}}</ref>
In the UK, United States, and Australia there are further reports that loved ones have died due to ME/CFS.<ref name="NewScientist2006">{{Cite news | url=https://www.newscientist.com/letter/mg19125620-600-not-sadly-the-first/ | title = Not, sadly, the first | last = Senior |  first = Richard| date = Jul 26, 2006|work=New Scientist|access-date=2018-09-07|archive-url=|archive-date=|language=en-US}}</ref><ref name="NewScientist2006-2">{{Cite news | url=https://www.newscientist.com/article/dn9342-first-official-uk-death-from-chronic-fatigue-syndrome/ | title = First official UK death from chronic fatigue syndrome | last = Hooper |  first = Rowan| date = Jun 16, 2006|work=New Scientist|access-date=2018-09-07|archive-url=|archive-date=|language=en-US}}</ref>


== Notable studies ==
== Notable studies ==
*2019, [[Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy (2019) Mueller, et al|Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy]]<ref name="Mueller2019">{{Cite journal|url=https://link.springer.com/epdf/10.1007/s11682-018-0029-4 | title = Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy|last=Mueller |  first = Christina | authorlink= | last2 = Lin | first2=Joanne | authorlink2 = | date = 2019 | journal=Brain Imaging and Behavior|volume=14|issue= | pages = 562-572|doi=10.1007/s11682-018-0029-4|archive-url=|archive-date=|access-date=2019-01-17 | last3 = Sheriff | first3 = Sulaiman | authorlink3 =  | last4 = Maudsley | first4 = Andrew | authorlink4 =  | last5 = Younger | first5 = Jarred|authorlink5=Jarred Younger}}</ref>
*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=|publisher=SolveCFS}}</ref> (TALK)
**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=|publisher=SolveCFS}}</ref> (TALK)


*2016, [[Metabolic features of chronic fatigue syndrome]]
*2016, [[Metabolic features of chronic fatigue syndrome]]
*2015, Daily cytokine fluctuations, driven by leptin, are associated with fatigue severity in chronic fatigue syndrome: Evidence of inflammatory pathology<ref name="stanfordleptin">{{Cite journal | last1  = Stringer  | first1 = EA  | last2  = Baker| first2 = KS | last3  = Carrol  | first3 = IR | last4 = Montoya | first4 = JG | authorlink4 = Jose Montoya | last5 = Chu | first5 = L  | authorlink5 = Lily Chu | last6 = Maeker  | first6 = HT  | last7 = Younger | first7 = JW | authorlink7 = Jarred Younger| title  = Daily cytokine fluctuations, driven by leptin, are associated with fatigue severity in chronic fatigue syndrome: Evidence of inflammatory pathology | journal = J Transl Med.| date = Apr 9, 2013 | pmid    = 23570606 | pmc = 3637529 | doi = 10.1186/1479-5876-11-93| url = http://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-11-93 }}</ref> - [https://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-11-93 (Full text)]
*2015, 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 name="Zeineh2014">{{Cite web|url=https://pubs.rsna.org/doi/10.1148/radiol.14141079|doi=10.1148/radiol.14141079|access-date=2019-01-30 | title = Right Arcuate Fasciculus Abnormality in Chronic Fatigue Syndrome | date = Oct 29, 2014|last=Zeineh | first = Michael | authorlink=Michael Zeineh | last2 = Kang | first2 = James | authorlink2 = |archive-url=|archive-date= | last3 = Atlas | first3=Scott | authorlink3 =  | last4 = Raman | first4=Mira | authorlink4 = |authorlink5= | last5 = Reiss | first5=Allan | last6 = Norris | first6=Jane | authorlink6 =  | last7 = Valencia | first7 = Ian | authorlink7 =  | first8 = Jose | last8 = Montoya | authorlink8 = |publisher=Radiology}}</ref>
* 2014, Right Arcuate Fasciculus Abnormality in Chronic Fatigue Syndrome<ref name="Zeineh2014">{{Cite web|url=https://pubs.rsna.org/doi/10.1148/radiol.14141079|doi=10.1148/radiol.14141079|access-date=2019-01-30 | title = Right Arcuate Fasciculus Abnormality in Chronic Fatigue Syndrome | date = Oct 29, 2014 | last = Zeineh | first = Michael | authorlink=Michael Zeineh | last2 = Kang | first2 = James | authorlink2 = |archive-url=|archive-date= | last3 = Atlas | first3=Scott | authorlink3 =  | last4 = Raman | first4=Mira | authorlink4 = |authorlink5= | last5 = Reiss | first5=Allan | last6 = Norris | first6=Jane | authorlink6 =  | last7 = Valencia | first7 = Ian | authorlink7 =  | first8 = Jose | last8 = Montoya | authorlink8 = |publisher=Radiology}}</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.<ref name="Zeineh2014" /></blockquote>
<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.<ref name="Zeineh2014" /></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]]
:*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]]

Revision as of 20:48, November 30, 2022

Primer for family, friends and care providers is for those who know or care for someone with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a complicated and life-altering systemic, biological, neuroimmune disease.[1] Patient care and severity of the disease is poorly understood due to decades of research neglect and a lack of clinical care worldwide.[2][3]

Diagnosing ME/CFS is difficult as there is no clinically accepted biomarker and there are numerous definitions and criteria that have been developed and utilized over the decades.

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: post-exertional malaise (PEM); chronic fatigue (CF), unrefreshing sleep/sleep problems; and cognitive impairment/brain fog and/or orthostatic intolerance (OI).[4][5] A patient can have many more symptoms[1] 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[6][5] and the patient may have other symptoms.[5] The Canadian Consensus Criteria (CCC) requires the core symptoms and neurological, autonomic, neuroendocrine, immune system, and myalgia to meet its ME/CFS diagnostic criteria.[7] 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.[8]

Although the Fukuda[9] and the Oxford Criteria[10] are sometimes 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).[11][9][12][13] There have been media reports of athletes diagnosed with myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) who have recovered in a relatively short period of time after rest, supplementation, and diet changes;[14][15][16][17] these athletes may have had overtraining syndrome (which has the symptom of CF) and not ME, CFS.[18] CF is a symptom of many diseases and illnesses, and should not be confused with the grossly misnamed disease CFS. Some people with adrenal failure are sometimes wrongly diagnosed with CFS.[8]

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

"The most common overlapping condition with ME/CFS is fibromyalgia."[8][19] 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.[20]

Unfortunately, a psychiatric approach has been taken with ME/CFS in the past, 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, and caused significant harm.[21][22] 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.[23] The CDC recognizes the hallmark symptom of post-exertional malaise which is a worsening of symptoms after physical, mental or emotional exertion[4] and says ME/CFS is a "disabling and complex disease."[24] 

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

Recommended reading for care providers[edit | edit source]

Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome or ME/CFS) is a complex, challenging disease for everyone involved - not least the caregiver. Caring for someone with ME will require adaptability, steadfast patience and commitment over many years, if not a lifetime.[25]

Table of Contents:
1) Educate Yourself
2) Take Care of Yourself
3) Family Dynamic
4) Relationship with the Patient
5) Resources
6) Advocate
7) Power of Attorney
8) Get Organized
9) Join the Community
10) Read more[25]

Nurse Greg Crowhurst has cared for his wife Linda for decades as she is very severely ill with ME. Greg has written several books on caring for someone with ME.

Other books/guides

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

ME/CFS can begin from many acute/sudden[26] events: usually viral or bacterial infections, but also trauma, surgery or childbirth, allergic reaction, and stress.[27] There is also a gradual onset in some people,[26][28] that is not attributed to any one event. Occasionally, ME/CFS has been triggered by environmental toxins or the receipt of an immunizing injection.[29] Some say that the disease ME always has an acute/sudden infectious onset.[30]

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 another infection, and meets one or more diagnostic criteria for either ME, CFS, or ME/CFS.[31]:157-158[32] 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.[29] Furthermore, symptoms and disease severity vary among patients.[33][34]

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.[35][23] The CDC notes abnormalities with the immune system, cellular metabolism, neuroendocrine disturbances, and blood pressure or heart rate regulation.[23]

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."[23]

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.[27] 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.[36]

Families, partners, and friends do not report contracting ME/CFS from someone with the disease nor do patients report passing it on to others.[37] However, Underhill and O'Gorman (2006) researched 219 patients with ME/CFS, and concluded that close household contact and genetics were both risk factors for CFS, finding 3.2% of spouses/partners of those with CFS also had the illness.[38] 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.[35]

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".[39]

Blood donation and organ transplant[edit | edit source]

Blood donation prohibition had been enacted in the United States (US) and United Kingdom (UK)</ref>[40] at one time due to the research of XMRV as being the infectious trigger of CFS[41] and that patients carried the virus.[40] Two papers on XMRV were retracted as it was a laboratory contamination.[42][43] The US American Red Cross and UK National Health Service Blood and Transplant sites no longer have statements barring transfusions or transplants for CFS.[44][45] Australia has a prohibition on blood transfusion as a precaution.[46]

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.[47][48]

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[49]

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.[50]

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."[5] Some CFS patients can work with job accommodations but 1/3 to 1/2 become unemployed and many rely on SSDI/SSI.[51][52][53]

Pediatric ME/CFS is defined by the CDC[60] and the National Academy of Medicine (NAM)[31]:181 although it is usually diagnosed in adults.[24] "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."[61] The prognosis in adolescents is considered to be better than in adults.[62][36] Children are diagnosed with ME/CFS at three months of illness under SEID and CCC and ME is diagnosed immediately under International Consensus Criteria.[63][5][7][8]
"Worldwide, there may be as many as 17 – 24 million people with ME/CFS."[64] 25% of ME/CFS patients are housebound or bedbound at some point in their illness.[65][31]:32 90% of patients are undiagnosed.[66]
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.[67] The majority of patients remains significantly impaired. A substantial improvement however is noted in an estimated 40% of patients.[67][68]

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.[4] 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, mental or emotional exertion 24-72 hours prior. She believes not understanding PEM made her illness worsen over the years and is now disabled meeting the CCC with PEM.
Brian Vastag is an American and award-winning journalist and an ME/CFS patient that won a disability case against Prudential, proving that PEM is a severe symptom that keeps him from gainful employment
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.[69]
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[70]
#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.[71]
  • 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)[1][4][72] there is a payback of worsening ME/CFS symptoms which can be delayed 24-72 hours, or more.[4][73][74] and can last 24 hours and even days, weeks, or months.[29][75][76] 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.[1][72] 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).[77]

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[edit | edit source]

Drugs, treatments, and therapies[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 illness, 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.[80]

Attempts to obtain FDA approval for Ampligen in the US have failed, but it is available to some people on compassionate use.[81] Argentina approved the use of Ampligen for severe ME/CFS in 2016.[82][83] Also in 2016, it was made available on a limited basis in Europe.[84] In July 2018, AIM ImmunoTech AIM ImmunoTech announced the expansion of its US compassionate use program, known as AMP-511, to new ME/CFS patients.[85][86]

Rituximab, a lymphoma drug, had shown promising results in initial trials in Norway,[87] 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 profilethat would be responsive to Rituximab.[88] A phase III trial published in 2019 showed Rituximab does not improve ME/CFS.[89]

Jarred Younger announced in early 2016 that he will be undertaking a trial of low dose naltrexone (LDN) in ME/CFS.[90][91]

Treating other conditions[edit | edit source]

Different forms of OI are treated with beta-blockers (Metopropol), Fludrocortisone (Florinef), and Pyridostigmine.[92] When treating other diseases, illnesses, and conditions, and ME/CFS comorbids and overlapping conditions such as sleep difficulties, cognitive problems, pain, and other symptoms it is important to remember that patients are sensitive to medications.[93] 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."[93] For instance, tricyclic drugs can improve mood and help with sleep and pain. However, in some in can worsen OI.[93]

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 pools into her legs

.

Psychiatry has taken an inappropriate lead and treatment path for an organic biological disease, although this is now changing. In the UK, graded exercise therapy (GET) and cognitive behavioral therapy (CBT) were employed by ME/CFS Clinics until 2021.[22] Exercise or stepped increases in activity exacerbates symptoms and were found to harm most patients, so this treatment is now advised against.[21][22] Depression and anxiety drugs have been utilized, but are ineffective.[94]

Treating a biological disease as a mental illness is not cost effective. The drugs are inexpensive 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 illness kick in stopping any payment or shortening the payout time-frame.[95][96][97][98]

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

GET and 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. Based on the flawed PACE trial which used the flawed Oxford criteria to diagnose and recruit patients, GET and CBT found its way into treating people with ME/CFS.

Exercise, especially GET, can injure an ME/CFS patient further.

Claims of curative treatments[edit | edit source]

Charlatans claim they can cure CFS (per the CDC "there is no cure"[8]) when in reality they may be able to treat 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.[99][100][101]

Additionally, there have been media reports of some professional or amateur athletes diagnosed with CFS that recovered in a relatively short period of time after rest, supplementation, and diet changes[14][15][16][17] may have had overtraining syndrome,[18] while some people with anemia, allergies, idiopathic chronic fatigue or other fatiguing illnesses can be erroneously misdiagnosed with CFS.[8]

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 NIH, the CDC reinstating and increasing funding and education based on IOM recommendations and the HHS funding to develop Centers of Excellence.[102] #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.[105][106]
  • 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.[107]

MEAction input

  • Jul 29, 2018, CDC Revises its Information on ME[108] #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]

Documentary[edit | edit source]

Films

Forgotten Plague.jpeg
Unrest.jpg

Short film[edit | edit source]

News media[edit | edit source]

Talks and interviews[edit | edit source]

  • Jennifer Brea is interviewed for the upcoming BRIC Flix on her ME/CFS disease experience and her 2017 documentary film Unrest at 5:30 and 10:20 - Youtube (2016)

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 (Pediatric)
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]

Research avenues[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 that loved ones have died due to ME/CFS.[123][124]

Notable studies[edit | edit source]

  • 2014, Right Arcuate Fasciculus Abnormality in Chronic Fatigue Syndrome[128]

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.[128]

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

See also[edit | edit source]

Potential treatments and research

Learn more[edit | edit source]

Guides and reports

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 of a pool to make him swim, and put on a scary theme park ride to scare him into moving.

Outbreaks

References[edit | edit source]

  1. 1.0 1.1 1.2 1.3 1.4 "What is ME/CFS?". Open Medicine Foundation. Retrieved January 24, 2019.
  2. Tuller, David (February 4, 2016). "Reexamining Chronic Fatigue Syndrome Research And Treatment Policy". healthaffairs.org. Retrieved September 7, 2018.
  3. "Funding for U.S. research centers falls way short - #MEAction". #MEAction. January 22, 2017. Retrieved September 7, 2018.
  4. 4.0 4.1 4.2 4.3 4.4 4.5 "Symptoms of ME/CFS | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Centers for Disease Control and Prevention. January 18, 2019. Retrieved January 22, 2019.
  5. 5.0 5.1 5.2 5.3 5.4 5.5 5.6 "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness | Clinicians Guide" (PDF). National Academies. 2015. pp. 9–10.
  6. 6.0 6.1 "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness - Diagnostic Algorithm". 2015.
  7. 7.0 7.1 Carruthers, Bruce M.; Jain, Anil Kumar; De Meirleir, Kenny L.; Peterson, Daniel L.; Klimas, Nancy G.; Lerner, A. Martin; Bested, Alison C.; Flor-Henry, Pierre; Joshi, Pradip; Powles, AC Peter; Sherkey, Jeffrey A.; van de Sande, Marjorie I. (2003). "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols" (PDF). Journal of Chronic Fatigue Syndrome. 11 (2): 7-115. doi:10.1300/J092v11n01_02.
  8. 8.0 8.1 8.2 8.3 8.4 8.5 Carruthers, Bruce M.; van de Sande, Marjorie I.; De Meirleir, Kenny L.; Klimas, Nancy G.; Broderick, Gordon; Mitchell, Terry; Staines, Donald; Powles, A.C. Peter; Speight, Nigel; Vallings, Rosamund; Bateman, Lucinda; Baumgarten-Austrheim, Barbara; Bell, David; Carlo-Stella, Nicoletta; Chia, John; Darragh, Austin; Jo, Daehyun; Lewis, Donald; Light, Alan; Marshall-Gradisnik, Sonya; Mena, Ismael; Mikovits, Judy; Miwa, Kunihisa; Murovska, Modra; Pall, Martin; Stevens, Staci (August 22, 2011). "Myalgic encephalomyelitis: International Consensus Criteria". Journal of Internal Medicine. 270 (4): 327–338. doi:10.1111/j.1365-2796.2011.02428.x. ISSN 0954-6820. PMC 3427890. PMID 21777306.
  9. 9.0 9.1 Fukuda, K.; Straus, S.E.; Hickie, I.; Sharpe, M.C.; Dobbins, J.G.; Komaroff, A. (December 15, 1994). "The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group" (PDF). Annals of Internal Medicine. American College of Physicians. 121 (12): 953–959. doi:10.7326/0003-4819-121-12-199412150-00009. ISSN 0003-4819. PMID 7978722.
  10. Sharpe, M C; Archard, L C; Banatvala, J E; Borysiewicz, L K; Clare, AW; David, A; Edwards, RH; Hawton, KE; Lambert, HP (February 1991). "A report--chronic fatigue syndrome: guidelines for research". Journal of the Royal Society of Medicine. 84 (2): 118–121. ISSN 0141-0768. PMC 1293107. PMID 1999813.
  11. "What Does a True ME Definition Look Like?". MEadvocacy.org. Retrieved January 25, 2019.
  12. US NIH Report Calls for UK Definition of ME/CFS to be Scrapped - The Argus Report By: Penny Swift
  13. Spotila, Jennie; Dimmock, Mary (August 16, 2016). "AHRQ Evidence Review Changes Its Conclusions". occupyme.net. Retrieved January 25, 2019.
  14. 14.0 14.1 Tanner, Claudia (2018). "Marathon runner forced to quit work after developing ME claims diet change gave him his life back". iNews.
  15. 15.0 15.1 Broadbent, Rick (December 2, 2017). "Muslim fighter with ME who left an arranged marriage to win world". The Times. ISSN 0140-0460. Retrieved February 28, 2019.
  16. 16.0 16.1 Park, Andy; O'Halloran, Clare. "Committee reviews 'potentially harmful and old fashioned' chronic fatigue treatments". ABC News. 6mins 18s.
  17. 17.0 17.1 Broadbent, Rick (February 27, 2019). "Nathan Douglas: London 2012 was the darkest period of my life". The Times. ISSN 0140-0460. Retrieved February 28, 2019.
  18. 18.0 18.1 Spence, Vance. "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". Irish M.E. Association.
  19. Jason, Leonard; Taylor, R.R.; Kennedy, C.L.; Song, S; Johnson, D; Torres, S.R. (January 1, 2001). "Chronic fatigue syndrome: Comorbidity with fibromyalgia and psychiatric illness". Medicine and Psychiatry. 4: 29–34.
  20. Natelson, Benjamin H. (February 19, 2019). "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia: Definitions, Similarities, and Differences". Clinical Therapeutics. 41 (4): 612. doi:10.1016/j.clinthera.2018.12.016. ISSN 0149-2918. PMID 30795933.
  21. 21.0 21.1 Oxford Clinical Allied Technology and Trials Services Unit (OxCATTS) (February 27, 2019). "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" (PDF). Oxford Brookes University.
  22. 22.0 22.1 22.2 NICE Guideline Development Group (October 29, 2021). "Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome:diagnosis and management. NICE guideline". National Institute for Health and Care Excellence.
  23. 23.0 23.1 23.2 23.3 "Etiology and Pathophysiology | Presentation and Clinical Course | Healthcare Providers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Centers for Disease Control and Prevention. November 8, 2018. Retrieved January 22, 2019.
  24. 24.0 24.1 "What is ME/CFS? | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. January 18, 2019. Retrieved January 31, 2019.
  25. 25.0 25.1 25.2 25.3 25.4 "Caregivers Guide to ME.pdf". Google Docs. MEAction. Retrieved March 31, 2019.
  26. 26.0 26.1 Chu, Lily; Valencia, Ian J.; Garvert, Donn W.; Montoya, Jose G. (January 14, 2019). "Onset patterns and course of myalgic encephalomyelitis/chronic fatigue syndrome". Frontiers in Pediatrics. doi:10.3389/fped.2019.00012.
  27. 27.0 27.1 "CDC Public Health Grand Rounds - Chronic Fatigue Syndrome - Advancing Research and Clinical Education" (PDF). cdc.gov. p. 6.
  28. "Presentation and Clinical Course of ME/CFS | Information for Healthcare Providers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS". Centers for Disease Control and Prevention. December 12, 2018. Retrieved February 7, 2019.
  29. 29.0 29.1 29.2 29.3 International Association for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis; Friedberg, Fred; Bateman, Lucinda; Bested, Alison C; Davenport, Todd; Friedman, Kenneth J; Gurwitt, Alan R; Jason, Leonard A; Lapp, Charles W; Stevens, Staci R; Underhill, Rosemary A; Vallings, Rosamund (2014), Chronic Fatigue Syndrome Myalgic Encephalomyelitis Primer for Clinical Practitioners (PDF), Chicago, USA: International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, The illness can vary from mild to severe, with symptoms that may fluctuate significantly from hour to hour and day to day.
  30. Evans, Meredyth; Jason, Leonard (2018). "Onset patterns of chronic fatigue syndrome and myalgic encephalomyelitis" (PDF). Research on Chronic Diseases: 2.
  31. 31.0 31.1 31.2 "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". The National Academies Press. March 16, 2015. doi:10.17226/19012.
  32. 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
  33. Symptoms and diagnosis of ME/CFS - ME Association
  34. "Chronic Fatigue Syndrome - Symptoms". Web MD. Retrieved April 12, 2022.
  35. 35.0 35.1 "Possible Causes | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Centers for Disease Control and Prevention. January 18, 2019. Retrieved January 27, 2019.
  36. 36.0 36.1 Rowe, Katherine S.; Vallings, Rosamund; Stewart, Julian M.; Speight, Nigel; Schwartz, Malcolm S.; Medow, Marvin S.; Gurwitt, Alan; Friedman, Kenneth J.; Underhill, Rosemary A. (2017). "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer". Frontiers in Pediatrics. 5. doi:10.3389/fped.2017.00121. ISSN 2296-2360.
  37. "Is CFS contagious? | ProHealth Fibromyalgia, ME/CFS and Lyme Disease Forums". forums.prohealth.com. Retrieved February 13, 2019.
  38. Underhill, Rosemary A.; O'Gorman, Ruth (January 1, 2006). "Prevalence of Chronic Fatigue Syndrome and Chronic Fatigue Within Families of CFS Patients". Journal of Chronic Fatigue Syndrome. 13 (1): 3–13. doi:10.1300/J092v13n01_02. ISSN 1057-3321.
  39. "OMF funded research". Open Medicine Foundation. June 4, 2018.
  40. 40.0 40.1 Stein, Rob (December 3, 2010). "Red Cross bars chronic fatigue patients from donating blood". Washington Post.
  41. "XMRV testing in the UK". ME Association. 2010. Retrieved February 13, 2019.
  42. "Redaction, retraction and reaction". Nature Reviews Microbiology. 10 (12): 799. December 2012. doi:10.1038/nrmicro2928. ISSN 1740-1534.
  43. "Multicenter Study Finds No Correlation between Chronic Fatigue Syndrome and XMRV". transfusionnews.com. Retrieved February 13, 2019.
  44. "Frequently Asked Questions". aabb.org. American Red Cross. Retrieved February 13, 2019. Your search for “Chronic fatigue syndrome” returned no results.
  45. "Blood and transport matters". hospital.blood.co.uk. NHSBT Hospitals and Science. February 13, 2019.
  46. Chronic fatigue syndrome – I have/had chronic fatigue syndrome. Can I donate?
  47. Brea, Jennifer (January 17, 2017). "What happens when you have a disease doctors can't diagnose". YouTube. TED.
  48. "What happens when you have a disease doctors can't diagnose". TED.com. June 2016.
  49. Weber, Veronica (July 10, 2015). "Invisible Illness - Stories of Chronic Fatigue Syndrome". YouTube. Palo Alto Online.
  50. Kaufman, David (October 16, 2018). "Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome". YouTube. Unrest Film.
  51. Disability for CFS - Phoenix Rising
  52. CFS - Womenshealth.gov
  53. Job Accommodations - MASS CFIDS
  54. 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
  55. 55.0 55.1 "Epidemiology | Presentation and Clinical Course | Healthcare Providers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Centers for Disease Control and Prevention. November 8, 2018. Retrieved January 29, 2019.
  56. "ME/CFS in Children | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Centers for Disease Control and Prevention. January 18, 2019. Retrieved January 29, 2019.
  57. "Pediatric ME/CFS Home Page". massmecfs.org. Retrieved January 29, 2019.
  58. Fact Sheet Autoimmune Disease in Women: NWHIC - Right Diagnosis - Aug 2015
  59. Capelli, E.; Zola, R.; Lorusso, L.; Venturini, L.; Sardi, F.; Ricevuti, G. (October 2010). "Chronic fatigue syndrome/myalgic encephalomyelitis: an update". International Journal of Immunopathology and Pharmacology. 23 (4): 981–989. doi:10.1177/039463201002300402. ISSN 0394-6320. PMID 21244747.
  60. "Pediatric ME/CFS: Fact Sheet for Healthcare Professionals | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. October 10, 2017. Retrieved October 13, 2018.
  61. "ME/CFS in Children - by David S. Bell, MD". Open Medicine Foundation. June 25, 2016. Retrieved August 11, 2018.
  62. "Prognosis | Presentation and Clinical Course | Healthcare Providers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. July 10, 2018. Retrieved October 28, 2018.
  63. "Pediatric ME/CFS links". Massachusetts ME/CFS & FM Association. Retrieved August 11, 2018.
  64. "How Many People Have ME/CFS? – American ME and CFS Society". Retrieved January 31, 2019.
  65. 65.0 65.1 "Myalgic Encelphalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts" (PDF). National Academies. 2015.
  66. "What is ME/CFS? | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. January 18, 2019. Retrieved January 31, 2019.
  67. 67.0 67.1 Cairns, R.; Hotopf, M. (January 2005). "A systematic review describing the prognosis of chronic fatigue syndrome". Occupational Medicine (Oxford, England). 55 (1): 20–31. doi:10.1093/occmed/kqi013. ISSN 0962-7480. PMID 15699087.
  68. Joyce, J.; Hotopf, M.; Wessely, S. (March 1997). "The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review". QJM: monthly journal of the Association of Physicians. 90 (3): 223–233. ISSN 1460-2725. PMID 9093600.
  69. Croxall, Jack (January 17, 2019). "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". @JackCroxall. Retrieved January 17, 2019.
  70. Karen (January 17, 2019). "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". @hopeforMEyet. Retrieved January 17, 2019.
  71. Köhler, Henry (January 17, 2019). "#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". @Authorportrait. Retrieved January 17, 2019.
  72. 72.0 72.1 "What Are the Symptoms of Chronic Fatigue Syndrome". WebMD. Retrieved January 24, 2019.
  73. Lindheimer, Jacob B.; Meyer, Jacob D.; Stegner, Aaron J.; Dougherty, Ryan J.; Van Riper, Stephanie M.; Shields, Morgan; Reisner, Amanda; Shukla, Sanjay K.; Light, Alan R. (April 3, 2017). "Symptom variability following acute exercise in myalgic encephalomyelitis/chronic fatigue syndrome: a perspective on measuring post-exertion malaise". Fatigue: Biomedicine, Health & Behavior. 5 (2): 69–88. doi:10.1080/21641846.2017.1321166. ISSN 2164-1846.
  74. Yoshiuchi, Kazuhiro; Cook, Dane B.; Ohashi, Kyoko; Kumano, Hiroaki; Kuboki, Tomifusa; Yamamoto, Yoshiharu; Natelson, Benjamin H. (December 5, 2007). "A real-time assessment of the effect of exercise in chronic fatigue syndrome". Physiology & Behavior. 92 (5): 963–968. doi:10.1016/j.physbeh.2007.07.001. ISSN 0031-9384. PMC 2170105. PMID 17655887.
  75. VanNess, J. Mark; Stevens, Staci R.; Bateman, Lucinda; Stiles, Travis L.; Snell, Christopher R. (February 2010). "Postexertional malaise in women with chronic fatigue syndrome". Journal of Women's Health (2002). 19 (2): 239–244. doi:10.1089/jwh.2009.1507. ISSN 1931-843X. PMID 20095909.
  76. 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
  77. What Health - International CFS/ME Awareness Day 2017 - CFIDS Association of America
  78. What is ME/CFS? - Solve ME/CFS Initiative
  79. "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Toward Optimized Practice (TOP) - CPGs". linkis.com. Retrieved September 7, 2018.
  80. Mariani, Mike (September 3, 2019). "A Town for People with Chronic Fatigue Syndrome". New Yorker. Retrieved April 13, 2022.
  81. "Experimental treatments". American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society. Retrieved March 18, 2021.
  82. Hemispherx Biopharma, Inc. (August 23, 2016). "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". GlobeNewswire News Room. Retrieved August 13, 2018.
  83. "Hemispherx Biopharma, Inc. Executive Informational Overview" (PDF). Crystal Research Associates (pdf). November 27, 2016.
  84. George, John (July 25, 2016). "Hemispherx ships Ampligen for European chronic fatigue syndrome program". bizjournals.com. Retrieved August 13, 2018.
  85. Hemispherx BioPharma : Opens FDA-Approved Reimbursement Based Expanded Access Treatment Program for ME/CFS to New Enrollees - 4 Traders
  86. "Hemispherx Biopharma Inc. Announces Advancement in Expanded Access Program for Ampligen in the Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". finance.yahoo.com. GlobeNewswire. January 2, 2019. Retrieved February 10, 2019.
  87. Fluge, Øystein; Risa, Kristin; Lunde, Sigrid; Alme, Kine; Rekeland, Ingrid Gurvin; Sapkota, Dipak; Kristoffersen, Einar Kleboe; Sørland, Kari; Bruland, Ove (July 1, 2015). van der Feltz-Cornelis (ed.). "B-Lymphocyte Depletion in Myalgic Encephalopathy/ Chronic Fatigue Syndrome. An Open-Label Phase II Study with Rituximab Maintenance Treatment". PLOS ONE. 10 (7): e0129898. doi:10.1371/journal.pone.0129898. ISSN 1932-6203. PMC 4488509. PMID 26132314. Unknown parameter |editor- first= ignored (help)
  88. "Norwegian Rituximab Chronic Fatigue Syndrome (ME/CFS) Trial Fails". Simmaron Research. Retrieved November 21, 2021.
  89. Fluge, Øystein; Rekeland, Ingrid G.; Lien, Katarina; Thürmer, Hanne; Borchgrevink, Petter C.; Schäfer, Christoph; Sørland, Kari; Aßmus, Jörg; Ktoridou-Valen, Irini (April 2, 2019). "B-Lymphocyte Depletion in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Randomized, Double-Blind, Placebo-Controlled Trial". Annals of Internal Medicine. doi:10.7326/M18-1451. ISSN 1539-3704. PMID 30934066.
  90. Johnson, Cort (February 4, 2016). "Low Dose Naltrexone Drug Combination Proposed for Chronic Fatigue Syndrome (ME/CFS)". Health Rising. Retrieved September 7, 2018.
  91. "LDN Chronic Fatigue Syndrome Clinical Trial - Neuroinflammation, Pain and Fatigue Laboratory". Neuroinflammation, Pain and Fatigue Laboratory. February 23, 2017. Retrieved September 7, 2018.
  92. "Pharmaceutical Medications for Chronic Fatigue Syndrome & Myalgic Encephalomyelitis - Prohealth". Prohealth. Retrieved August 28, 2018.
  93. 93.0 93.1 93.2 "Monitoring the Use of All Medicines and Supplements | Clinical Care of Patients | Healthcare Providers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Centers for Disease Control and Prevention. November 8, 2018. Retrieved January 27, 2019.
  94. 94.0 94.1 Myhill, Sarah. "CFS or depression - what are the differences - DoctorMyhill". drmyhill.co.uk. Retrieved September 7, 2018.
  95. Tuller, David (November 17, 2015). "Trial by Error, Continued: PACE Team's Work for Insurance Companies Is "Not Related" to PACE. Really?". Virology blog. Retrieved September 7, 2018.
  96. Bernhard, Toni (December 27, 2012). "Physical Illnesses May Soon Be Labeled "Mental Disorders"". Psychology Today. Retrieved September 7, 2018.
  97. Batty, David (April 28, 2004). "People with mental illness face widespread discrimination". the Guardian. Retrieved September 7, 2018.
  98. "Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability Benefits". Thoughts About M.E. March 21, 2016. Retrieved September 7, 2018.
  99. "Etiology and Pathophysiology | Presentation and Clinical Course | Healthcare Providers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. July 10, 2018. Retrieved September 7, 2018.
  100. "IOM 2015 Diagnostic Criteria | Diagnosis | Healthcare Providers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. July 10, 2018. Retrieved September 7, 2018.
  101. "Proposed Approach to ME/CFS Diagnosis in Children and Adults | Diagnosis | Healthcare Providers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. July 12, 2018. Retrieved September 7, 2018.
  102. "#MEAction meets with Senate staffers - #MEAction". #MEAction. March 16, 2016. Retrieved September 7, 2018.
  103. Tuller, David (July 10, 2017). "Trial By Error: The CDC Drops CBT/GET". Virology blog. Retrieved September 7, 2018.
  104. "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Centers for Disease Control and Prevention. July 3, 2018. Retrieved September 7, 2018.
  105. "Information for Healthcare Providers | ME/CFS". Centers for Disease Control and Prevention. July 10, 2018. Retrieved September 7, 2018.
  106. "New ME/CFS Web Content for Healthcare Providers | CDC Online Newsroom". Centers for Disease Control and Prevention. July 12, 2018. Retrieved September 7, 2018.
  107. Unger, Elizabeth; Medscape (February 25, 2019). "Chronic Fatigue Syndrome: It's Real, and We Can Do Better". Medscape. Retrieved February 25, 2019.
  108. Seltzer, Jaime (July 29, 2018). "CDC Revises Its Information on ME - #MEAction". #MEAction. Retrieved September 7, 2018.
  109. "ME/CFS in Children Fact Sheets | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. July 14, 2017. Retrieved September 7, 2018.
  110. "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness | Report Brief" (PDF). National Academies. February 2015.
  111. Invest in ME Research. "Invest in ME Research - UK Charity for Myalgic Encephalomyelitis FAQs". Invest in ME Research. Retrieved September 7, 2018.
  112. "What is ME/CFS? - Emerge Australia". Emerge Australia. Retrieved September 7, 2018.
  113. "What is ME/CFS?". The ME Association. Retrieved September 7, 2018.
  114. "Paediatric ME, CFS, SEID for Families and their GPs" (PDF). tymestrust.org. The Young ME Sufferers Trust.
  115. "ME/CFS". massmecfs.org. Retrieved January 24, 2019.
  116. "What, Exactly, Is a Biomarker Anyway? And Why Don't We Have One for ME/CFS?". drive.google.com. Solve ME/CFS Initiative.
  117. "Get the Facts about ME/CFS - Solve ME/CFS Initiative". Solve ME/CFS Initiative. Retrieved September 7, 2018.
  118. "What is ME/CFS?" (PDF). solvecfs.org. 2013.
  119. "Facts about Myalgic Encephalomyelitis (ME) - (Also called chronic fatigue syndrome or CFS)" (PDF). MEAction.
  120. "Learn about ME. Find educational tools for your advocacy". meaction.net.
  121. "Myalgic Encephalomyelitis - NORD (National Organization for Rare Disorders)". NORD (National Organization for Rare Disorders). Retrieved September 7, 2018.
  122. Jackson, Suzan (October 28, 2016). "What Do You Do When a Loved One Becomes Chronically Ill?". thirdAGE. Retrieved September 7, 2018.
  123. Senior, Richard (July 26, 2006). "Not, sadly, the first". New Scientist. Retrieved September 7, 2018.
  124. Hooper, Rowan (June 16, 2006). "First official UK death from chronic fatigue syndrome". New Scientist. Retrieved September 7, 2018.
  125. Mueller, Christina; Lin, Joanne; Sheriff, Sulaiman; Maudsley, Andrew; Younger, Jarred (2019). "Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy". Brain Imaging and Behavior. 14: 562–572. doi:10.1007/s11682-018-0029-4. Retrieved January 17, 2019.
  126. Younger, Jarred (December 14, 2018). "ME/CFS Involves Brain Inflammation: Results from a Ramsay Pilot Study". YouTube. SolveCFS.
  127. Stringer, EA; Baker, KS; Carrol, IR; Montoya, JG; Chu, L; Maeker, HT; Younger, JW (April 9, 2013). "Daily cytokine fluctuations, driven by leptin, are associated with fatigue severity in chronic fatigue syndrome: Evidence of inflammatory pathology". J Transl Med. doi:10.1186/1479-5876-11-93. PMC 3637529. PMID 23570606.
  128. 128.0 128.1 Zeineh, Michael; Kang, James; Atlas, Scott; Raman, Mira; Reiss, Allan; Norris, Jane; Valencia, Ian; Montoya, Jose (October 29, 2014). "Right Arcuate Fasciculus Abnormality in Chronic Fatigue Syndrome". Radiology. doi:10.1148/radiol.14141079. Retrieved January 30, 2019.
  129. Griffith, J.P.; Zarrouf, F.A. (2008). "A Systematic Review of Chronic Fatigue Syndrome: Don't Assume It's Depression". Primary Care Companion to The Journal of Clinical Psychiatry. 10 (2): 120–128. doi:10.4088/pcc.v10n0206. PMC 2292451. PMID 18458765.
  130. Hawk, C; Jason, L; Torres-Harding, S (2006). "Differential diagnosis of chronic fatigue syndrome and major depressive disorder" (PDF). International Journal of Behavioral Medicine. 13 (3): 244-51. doi:10.1207/s15327558ijbm1303_8. PMID 17078775.