MEpedia - User contributions [en]

Jaime Seltzer

2024-05-04T05:32:52Z

Anonymous990:add time100 inclusion

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'''Jaime Seltzer''' is an [[United States|American]] [[ME/CFS]] patient advocate and Scientific Director at [[The MEAction Network]].<ref>{{Cite web | url = https://www.meaction.net/2018/06/11/welcome-jaime-seltzer-to-the-meaction-team/ | title = Welcome Jaime Seltzer to the #MEAction Team – Director of Scientific and Medical Outreach {{!}} #MEAction|website = [[The MEAction Network]]|language=en-US|access-date=2018-08-14}}</ref> She is "responsible for fostering communication between research scientists, clinicians, and people with [[myalgic encephalomyelitis]]"(ME).<ref>{{Cite web | url = https://www.linkedin.com/in/jaime-seltzer-b23abb14 | title = Jaime Seltzer | last = | first = | date = |website=LinkedIn|archive-url=|archive-date=|url-status=|access-date=}}</ref> She was included in the TIME100 Health list in 2024 for her engagement with clinicians.<ref>{{cite web|url=https://time.com/6967257/jaime-seltzer/|title=TIME100 Health: Jaime Seltzer|last=Ducharme|first=Jamie|date=May 2, 2024}}</ref>

== MEAction and ME/CFS research resume ==
*Present Scientific Director, MEAction
*Scientific consultant on the [[ME/CFS project]], Stanford University, PI Dr [[Ronald Davis]]
*Representative of healthcare advocacy organization #MEAction at [[Centers for Disease Control and Prevention]] (CDC), [[National Institutes of Health]] (NIH), Capitol Hill; author of solicited research documents (RFI) to the [[National Institutes of Health|NIH]] and for researchers at Stanford University’s ME/CFS symposium, each with 75-100 citations assimilated
*Editor and consultant for [[Jen Brea]]’s [[What happens when you have a disease doctors can't diagnose - TED Talk (2016)|TED talk]] on healthcare equality and groundbreaking, Sundance-award-winning health documentary [[Unrest|''Unrest'']]
*Managing Editor for the online advocacy platform #MEAction, writing/curating 5–15 articles per week in advocacy and biomedical sciences while maintaining social media accounts and managing staff and volunteers<ref>{{Cite web | url = https://www.linkedin.com/in/jaime-seltzer-b23abb14 | title = Jaime Seltzer | last = | first = | date = |website=LinkedIn|archive-url=|archive-date=|url-status=|access-date=}}</ref>

== Speeches ==
*May 14, 2018, [https://www.youtube.com/watch?v=XZ4QENMQpZE Jaime's Speech (#MillionsMissing San Francisco 2018)]<ref>{{Cite web | url = https://www.youtube.com/watch?v=XZ4QENMQpZE | title = Jaime's Speech (#MillionsMissing San Francisco 2018) | last = Seltzer | first = Jaime | date = May 14, 2018 | website = YouTube|publisher=The ME Action Network|archive-url=|archive-date=|url-status=|access-date=}}</ref>

== Online presence ==
*e-mail: jaime@meaction.net
*[https://twitter.com/exceedhergrasp1 Twitter]

== References ==

[[Category:People with ME, CFS, and/or FMS]]
[[Category:Advocates or allies]]
{{Reflist}}

[[Category:American advocates or allies]]

Unrest

2024-03-17T21:19:12Z

Anonymous990:typo

[[File:Unrest.jpg|400px|thumb|right]]
'''Unrest''' is a documentary film about [[ME/CFS]] that premiered in January 2017 at the ''Sundance Film Festival''. [[Jennifer Brea]], a patient herself, directed filming from her sickbed using video conferencing tools.<ref name=":0">{{Cite web|url=http://www.canaryinacoalminefilm.com/team/ | title = Team|website=UNREST|language=en-US|access-date=2018-10-14}}</ref><ref>{{Cite news | url=http://blog.ted.com/illuminating-an-illness-without-end-fellows-friday-with-jennifer-brea/ | title = Illuminating an illness without end: Fellows Friday with Jennifer Brea | last =Eng | first = Karen Frances | date = 2013-10-25|work=TED Blog|access-date=2018-10-14|archive-url=|archive-date=|url-status=|language=en-US}}</ref> The film was primarily funded through a Kickstarter campaign which raised $212,962.<ref>[https://www.kickstarter.com/projects/959776320/canary-in-a-coal-mine Canary in a Coal Mine Kickstarter]</ref>

The film's previous working title was ''Canary in a Coal Mine''.

''Unrest'' premiered in competition at the 2017 [https://en.wikipedia.org/wiki/Sundance_Film_Festival Sundance Film Festival], in the US Documentary category. Brea won the category ''U.S. Documentary Special Jury Award for Editing''. <ref>{{Cite news | url=http://www.meaction.net/2016/11/30/jen-breas-unrest-to-debut-at-sundance-film-festival/?mc_cid=356f42e1a4&mc_eid=187c2b7814 | title = Jen Brea's 'Unrest' to Debut at Sundance Film Festival - #MEAction | last =S | first = Jaime | date = 2016-11-30|work=#MEAction|access-date=2018-10-14|archive-url=|archive-date=|url-status=|language=en-US}} </ref><ref>{{Cite web|url=http://www.sundance.org/blogs/news/competition-and-next-films-announced-for-2017-festival | title = 2017 Sundance Film Festival: Competition And Next Lineup Announced | last = | first = | date = Nov 29, 2016 | website = sundance.org|archive-url=|archive-date=|url-status=|access-date=2018-10-14}}</ref><ref>{{Cite web|url=http://www.sundance.org/festivals/sundance-film-festival/program/AWS-guide?ref=ksrtwitter&__prclt=WinCUx1q | title = '18 Sundance Film Festival - Award Winners|website=sundance.org|access-date=2018-10-14}}</ref>

[https://en.wikipedia.org/wiki/PBS PBS] acquired the US broadcast rights for ''Unrest'' and was broadcast on [https://en.wikipedia.org/wiki/Independent_Lens Independent Lens] January 8, 2018.<ref>{{Cite news | url=http://www.pbs.org/independentlens/films/unrest/ | title = Unrest {{!}} Filmmaker Documents Struggles with Chronic Fatigue Syndrome (M.E.) {{!}} Independent Lens {{!}} PBS|work=Independent Lens|access-date=2018-10-14|language=en-US}}</ref><ref>{{Cite news | url=http://www.indiewire.com/2017/01/pbs-unrest-sundance-film-acquisition-1201776575/ | title = PBS Buys Sundance Medical Mystery Documentary ‘Unrest’ | last =Winfrey | first = Graham | date = 2017-01-31|work=IndieWire|access-date=2018-10-14|language=en-US}}</ref>

The ''Academy of Motion Picture Arts and Sciences'' also known as [https://en.wikipedia.org/wiki/Academy_Awards Oscars] announced on 7 December 2017 that ''Unrest'' was shortlisted as one of 15 films from the original 170 films nominated and advanced for voting for the 90th academy awards.<ref>{{Cite news | url=http://www.oscars.org/news/15-documentary-features-advance-2017-oscarr-race?utm_source=UNREST+newsletter&utm_campaign=405c230cd8-EMAIL_CAMPAIGN_2017_12_08&utm_term=0_8ac43b105e-405c230cd8-10789813&goal=0_8ac43b105e-405c230cd8-10789813&mc_cid=405c230cd8&mc_eid=7803093492 | title = 15 DOCUMENTARY FEATURES ADVANCE IN 2017 OSCAR® RACE | date = 2017-12-07|work=Oscars.org {{!}} Academy of Motion Picture Arts and Sciences|access-date=2018-10-14|language=en}}</ref>

In September of 2018, ''Unrest'' was granted Continuing Education Credit in the [[United States|US]] for doctors, nurses, therapists, pharmacists, and social workers.<ref name=":1">{{Cite web|url=https://www.unrest.film/cme | title = Unrest Continuing Medical Education Program|website=UNREST|language=en-US|access-date=2018-10-18}}</ref>

==Awards and fellowships==

*2013 Paley Center DocPitch
*2014 Sundance DFP Grant
*2014 Chicken & Egg Grant
*2014 Harnisch Foundation Grant
*2015 Sundance DFP Fellowship
*2015 Good Pitch New York
*2015 IFP Spotlight on Documentaries
*2016 Fledgling Fund Audience Engagement Fellowship
*2016 IFP Documentary Lab
*2016 Tribeca Film Institute Network Market
*2016 Sheffield Doc/Fest MeetMarket and Alternate Realities
*2016 Firelight Media Lab
*2016 Sundance Edit & Story Lab
*2017 Sundance Film Festival US Documentary Competition

=== Continuing education credit ===
* 2018 [https://www.unrest.film/cme Watch ''Unrest'' and receive Continuing Education credit]<ref name=":1" />

==Notable people==
*[[Jennifer Brea]] (Director/Producer, screenwriter)
*Deborah Hoffmann (Executive Producer & Creative Advisor)
*Lindsey Dryden (Producer)
*Patricia Gillespie (Producer)
*Alysa Nahmias (Co-Producer)
*Kim Roberts (Editor and screenwriter)
*Emiliano Battista (Editor)
*Sam Heesen, Christian Laursen (Director of photography)
*Bear McCreary (Composer)

A list of all those involved in the film has been published.<ref name=":0" />

==List of media articles==

*2013, ''ABC News'' [http://abcnews.go.com/Health/video/canary-coal-mine-examines-chronic-fatigue-syndrome-20727717 'Canary In a Coal Mine' Examines Chronic Fatigue Syndrome]
* Jan 3, 2014, Al Jazeera America [http://america.aljazeera.com/watch/shows/america-tonight/america-tonight-blog/2014/1/3/1-million-americanshavethisdebilitatingdiseasewithalousyname.html Chronic fatigue syndrome activists launch 'uprising' from their beds]
*Aug 25, 2014, ''ProHealth'' [http://www.prohealth.com/library/showarticle.cfm?libid=19165 Interview: Jennifer Brea Talks About Obstacles, Adjustments, and Inspiration]
*2017, ''New Zealand International Film Festival'' [https://www.nziff.co.nz/2017/archive-1/unrest/ 'Unrest' 2017]
*2017, ''Tribeca Film Festival'' [https://tribecafilm.com/filmguide/unrest-2017 Virtual Arcade 'Unrest']
*2017, ''The Loft'' [https://loftcinema.org/film/unrest/ Unrest]
*Jan 27, 2017 ''Indie Wire'' [http://www.indiewire.com/2017/01/unrest-review-jennifer-brea-sundance-2017-documentary-1201774204/ ‘Unrest’ Review: A Personal Look at Chronic Fatigue Syndrome, With Powerful Results — Sundance 2017]
*Feb 1, 2017, ''Women and Hollywood''' [https://womenandhollywood.com/jennifer-breas-sundance-winner-unrest-acquired-by-pbs-504d63371760/ Jennifer Brea’s Sundance Winner “Unrest” Acquired by PBS]
*Feb 15, 2017, Huffington Post [https://www.huffingtonpost.com/entry/chronic-fatigue-syndrome-diagnostic-tests-treatment_us_58a490e7e4b0e172783aa350 Chronic Fatigue Syndrome: Diagnostic Tests, Treatment And Prevention Urgently Needed]
*Mar 16, 2017, ''Austin 360'' [http://movies.blog.austin360.com/2017/03/11/sxsw-film-unrest-examines-pain-riddled-life-with-chronic-fatigue/ 'SXSW Film: “Unrest” examines pain-riddled life with chronic fatigue']
*Mar 17, 2017, ''Information, Denmark'' [https://twitter.com/jenbrea/status/842758696383987714/photo/1?ref_src=twsrc%5Etfw&ref_url=http%3A%2F%2Fforums.phoenixrising.me%2Findex.php%3Fthreads%2Funrest-updates.49859%2F 'Optagelser at ef liv med kronisk traethedssyndrom']
*Mar 17, 2017, ''Politiken, Denmark'' [https://politiken.dk/forbrugogliv/sundhedogmotion/art5874906/Deres-celler-er-syge-–-læger-og-venner-siger-de-bare-skal-tage-sig-sammen 'Ny film om kronisk trætte: Deres celler er syge – læger og venner siger, de bare skal tage sig sammen']
*Apr 27, 2017, ''The Star'' [https://www.thestar.com/life/2017/04/27/unrest-documents-a-little-understood-disease-hot-docs.html Unrest documents a little understood disease: Hot Docs]
*Aug 14, 2017 ''From the Heart Productions'' [http://fromtheheartproductions.com/unrest-heros-journey-jennifer-brea/ Unrest: The Hero’s Journey of Jennifer Brea]
*Sep 5, 2017, SBS, Australia, [https://www.sbs.com.au/movies/article/2017/09/05/unrest-explores-hidden-world-chronic-fatigue-syndrome Unrest' explores the hidden world Chronic Fatigue Syndrome']
*Sep 14, 2017 ''Refinery 29'' [http://www.refinery29.uk/2017/09/172328/unrest-movie-chronic-fatigue-syndrome-woman 'What It's Really Like To Live With Chronic Fatigue Syndrome']
*Sep 20, 2017, ''Chicago Now'' [http://www.chicagonow.com/comedians-defying-gravity/2017/09/hit-with-sudden-disability-jen-brea-created-unrest-won-at-sundance-and-is-changing-the-world/ Hit with sudden disability, Jen Brea created “Unrest,” won at Sundance and is changing the world.]
*Sep 20, 2017, ''The Mighty'' [https://themighty.com/2017/09/unrest-documentary-chronic-fatigue-syndrome-jennifer-brea/ Jennifer Brea Directs and Films 'Unrest,' a Documentary About Her Chronic Fatigue Syndrome ']
*Sep 21, 2017 San Francisco Chronicle [http://www.sfchronicle.com/movies/article/Documenting-a-disease-from-the-inside-12217878.php Documenting a disease from the inside]
* Sep 22, 2017 WYNC [https://www.wnyc.org/story/battling-mysterious-illness/ Documentary of the Week: 'Battling a Mysterious Illness'] podcast
*Sep 23, 2017, Film Music Magazine [http://www.filmmusicmag.com/?p=17999 September Soundtrack Picks]
*Sep 23, 2017 the FRAME [https://www.scpr.org/programs/the-frame/2017/09/22/59295/unrest-filmmaker-was-determined-to-document-her-pa/ ''Unrest' filmmaker was determined to document her pain'''] podcast
*Sep 25, 2017 New York Post [https://nypost.com/2017/09/25/when-youre-in-constant-pain-and-nobody-believes-you/ When your in constant pain and nobody believes you]
*Sep 27, 2017 KCRW podcast [https://www.kcrw.com/news-culture/shows/press-play-with-madeleine-brand/college-basketball-scandal-heats-up Unrest offers a personal experience of chronic pain]
*Sep 28, 2017, ''SF Gate'' [http://www.sfgate.com/sports/article/Unrest-an-unflinching-look-at-Chronic-12232787.php ‘Unrest’ an unflinching look at chronic fatigue syndrome by a sufferer]
*Sep 28, 2017, PBS Travis Smiley [http://www.pbs.org/wnet/tavissmiley/interviews/director-jennifer-brea-professor-omar-wasow/ Interview with Director Jennifer Brea and Professor Omar Wasow]
*Sep 28, 2017, Today with Megan Kelly [https://www.today.com/video/filmmaker-opens-up-about-illness-that-doctors-told-her-was-all-in-her-head-1056956483601 'Filmmaker opens up about illness that doctors told her was ‘all in her head’']
*Sep 29, 2017, ''Deadline'' [http://deadline.com/2017/09/unrest-documentary-chronic-fatigue-syndrome-accessibility-for-homebound-audience-virtual-access-1202178990/ ‘Unrest’ Doc About Chronic Fatigue Making Sure Homebound Audience Has Virtual Access]
*Sep 29, 2017, ''Los Angeles Times''' [http://www.latimes.com/entertainment/movies/la-et-mn-jennifer-brea-unrest-documentary-20170929-story.html Director Jennifer Brea exposes the personal pain of an immune disorder in the documentary 'Unrest']
*Oct 1, 2017, ''Chicago Tribune'' [http://www.chicagotribune.com/lifestyles/health/ct-life-me-cfs-unrest-film-20170928-story.html 'Unrest' puts spotlight on disease that affects millions, including Riverside girl, 12]
*Oct 4, 2017, ''Cosmopolitan'' [http://www.cosmopolitan.com/lifestyle/a12779054/what-is-chronic-fatigue-syndrome/ Millions of Women Suffer From a Disease That Virtually Sucks the Life Out of Them — But Doctors Still Don’t Take It Seriously]
*Oct 4, 2017, ''British Medical Association'' [https://www.bma.org.uk/connecting-doctors/bmaspace/b/weblog/posts/unrest-tells-the-stories-of-those-living-with-me-it-raises-important-issues-for-the-medical-community?imgdoctors Unrest tells the stories of those living with ME; it raises important issues for the medical community]
* Oct 6, 2017 ''Science Friday podcast'' [https://www.sciencefriday.com/segments/once-dismissed-and-often-hidden-chronic-fatigue-patients-speak-up/ 'Once Dismissed And Hidden, Chronic Fatigue Patients Speak Up']
*Oct 16, 2017 ''The Upcoming'' [https://www.theupcoming.co.uk/2017/10/16/unrest-movie-review/ Unrest]
*Oct 18, 2017 ''The Times'' [https://www.thetimes.co.uk/article/our-lives-were-frozen-by-chronic-fatigue-syndrome-rdftnm75p 'Our lives were frozen by chronic fatigue syndrome'] (also features the [[NICE guidelines]])
*Oct 18, 2017 ''ITV Lunchtime News'' [https://m.facebook.com/story.php?story_fbid=10155282026482672&id=148007467671&_rdr&hc_location=ufi Short clip on ITV Facebook] [http://forums.phoenixrising.me/index.php?threads/unrest-updates.49859/page-10 Short clip on ITV Twitter] [https://www.youtube.com/watch?time_continue=7&v=7UVmIc6FKnE Full Interview on YouTube] (available to watch online)
*Oct 18, 2017 ''Cosmopolitan UK'' [http://www.cosmopolitan.com/uk/body/a13044515/me-myalgic-encephalomyelitis-jennifer-brea-chronic-fatigue-unrest-film/ 'What it’s like to live with an incurable illness no-one believes is real']
*Oct 19, 2017 ''Channel 5, UK'', [https://www.facebook.com/C5News/videos/1657630250928113/ News] (available to watch online)
*Oct 19, 2017 ''BBC World Service, Click'' [http://www.bbc.co.uk/programmes/p05k8h6j 'Tech helps film-maker with ME direct from bed']
*Oct 20, 2017 ''Spectator'' [https://life.spectator.co.uk/2017/10/film-reviews-the-death-of-stalin-unrest/ 'Film reviews: Unrest']
*Oct 21, 2017, ''BBC Radio Bristol'' [http://www.bbc.co.uk/programmes/p05j3qr6#play l Unrest Interview]
* Oct 23, 2017, ''BBC World News'' [https://www.youtube.com/watch?v=C6ksDvdYi94 BBC World News Interview] (available to watch online)
* Oct 23, 2017, ''Daily Express'' [https://www.express.co.uk/life-style/health/870117/what-is-chronic-fatigue-syndrome-symptoms-treatment-me-unrest?utm_content=buffercf1cf 'THIS mysterious condition affects millions more than MS - but you probably don't know it']
*Oct 23, 2017 ''Salon'' [https://www.salon.com/2017/10/23/maybe-this-is-all-in-your-head-when-doctors-dont-believe-women/ '“Maybe this is all in your head”: When doctors don’t believe women']
*Oct 23, 2017, ''The Pool'' [https://www.the-pool.com/health/health/2017/43/the-pool-talks-to-jennifer-brea-about-unrest-documentary A new film shows the heartbreaking reality of living with chronic fatigue syndrome]
*Oct 24, 2017, ''The Telegraph'' [http://www.telegraph.co.uk/health-fitness/body/could-documentary-change-way-perceive-chronic-fatigue-syndrome/?WT.mc_id 'Could this documentary change the way we perceive chronic fatigue syndrome?'] (also features the [[NICE guidelines]])
*Oct 25, 2017, ''BBC World Service Radio'' [http://www.bbc.co.uk/programmes/w3cstz71 Outlook]
* Oct 28, 2017, ''BBC Breakfast News'' [http://forums.phoenixrising.me/index.php?threads/me-on-bbc-news-this-morning.55776/page-2#post-929950 interview] (available to watch online)
*Oct 29, 2017, ''Paradigm Change'' [http://paradigmchange.me/unrest/ Jen Brea’s Award-Winning ME/CFS Film “Unrest” Discusses Mold Avoidance Issues]
*Nov 6, 2017 ''The Mighty'' [https://themighty.com/2017/10/attending-screening-jennifer-brea-unrest-mecfs/ What Happened When I Attended A Screening Of ‘Unrest’]
*Nov 8, 2017, ''BBC Ouch Disability'' [http://www.bbc.co.uk/programmes/p05mgjjz ME - The movie] and [https://www.bbc.com/news/amp/disability-41940865 Transcript]
*Nov 17, 2017 ''White House Chronicle'' by [[Llewellyn King]], [http://whchronicle.com/a-movie-david-goes-against-a-goliath-of-a-disease/ A Movie David Goes Against a Goliath of a Disease]
*Dec 18, 2017 ''Dr Oz'' [http://www.doctoroz.com/episode/caught-tape-watch-what-happens-when-extreme-exhaustion-takes-over-your-brain One Woman’s Unshakeable Exhaustion - Caught on Tape]
*Dec 20, 2017, ''Cosmpolitan'' [http://www.cosmopolitan.com/politics/g14471590/cosmo-most-popular-stories-in-2017/ Stories Cosmopolitan Readers Were Obsessed With in 2017] No. 8
*Dec 21, 2017, ''Orlando Sentinel' [http://www.orlandosentinel.com/entertainment/tv/tv-guy/os-et-pbs-to-air-winter-park-filmmaker-unrest-20171117-story.html PBS to air Winter Park filmmaker's 'Unrest' ']''
*Dec 21, 2017, ''The Hippocratic Post'' [https://www.hippocraticpost.com/innovation/unrest-new-film/ Unrest – a new film about ME]
*Jan 12, 2018, ''Wall Street Journal'' [https://www.wsj.com/articles/a-filmmakers-personal-look-at-chronic-fatigue-syndrome-1515783784 'A Filmmaker’s Personal Look at Chronic Fatigue Syndrome']
*Oct 14, 2018, ''Valley News'' [https://www.vnews.com/Film-Shines-Light-on-Poorly-Understood-Debilitating-Illness-20784041 Film Gives Voice to Chronic Fatigue Patients Seeking Understanding, Treatment]

*2016-2017, ''ME York Community'' [https://www.york-me-community.org/tag/unrest/ Unrest List of Articles]

''Unrest'' also led to groundbreaking and unprecedented positive media articles for ME sufferers in the [[United Kingdom]] which documented the history, politics and denial of the biomedical evidence for psychosomatic theories and the involvement of insurance companies and psychiatrists in the disease of ME. This information was available on the internet but had not been published in the mainstream media as this had previously been impossible due to the power and influence of the [[biopsychosocial]] psychiatrists and [[Science Media Centre]]. On 2 November 2017 the Huffington Post UK reported [http://m.huffingtonpost.co.uk/dr-simon-duffy/uk-establishment-me_b_18375968.html 'Will The UK Establishment Finally Stop Denying The Reality Of ME?'] which in a first examined the injustice faced by ME sufferers due to the British psychiatrists and the largest research trial, the [[PACE trial]]. On 7 January 2018, ''The Independent'' published [http://www.independent.co.uk/news/long_reads/why-patients-me-demanding-justice-millions-missing-chronic-fatigue-illness-disease-a8133616.html 'Time for Unrest: Why patients with ME are demanding justice'] which also investigated in-depth the history of the injustice faced by ME sufferers and the involvement of certain psychiatrists and insurance industry and Dr [[David Tuller]]'s expose of the [[PACE trial]] which was also commented on by the film's director. <ref>{{Cite news | url=https://threadreaderapp.com/thread/949819417927540737.html | title = Thread by @jenbrea: ".@_NathalieWright's withering @Independent piece lays bear the gaps in how is viewed on either side of the pond and the vested intere […]" #mecfs #pwme|access-date=2018-10-14|language=en}}</ref>

==Reviews==
*2017, ''LAEMMLE'' [https://www.laemmle.com/films/42389 "This is jaw-dropping stuff, made more profoundly disturbing by the fact that so little is known about the disease."]
*Jan 26, 2017, ''The Salt Lake Tribune'' [http://archive.sltrib.com/article.php?id=4867522&itype=CMSID Sundance review: 'Unrest']
*Jan 23, 2017, ''No Film School'' [https://nofilmschool.com/2017/01/unrest-jennifer-brea-interview-sundance-2017 Jennifer Brea Filmed Her Sundance Premiere Without Leaving Bed — And it Saved Her Life]
*Jan 23, 2017, ''Hollywood Reporter''' [https://www.hollywoodreporter.com/review/unrest-review-967867 'Unrest': Film Review | Sundance 2017]
*Jan 23, 2017, ''Bleedingcool'' [https://www.bleedingcool.com/2017/01/23/sundance-2017-unrest-emotional-watch/ Sundance 2017: ‘Unrest’ Is An Emotional Look At Human Strength]
*Jan 23, 2017, ’ ''Variety''' [https://variety.com/2017/film/markets-festivals/unrest-sundance-film-festival-1201966610/ Sundance Film Review: ‘Unrest']
*Jan 27, 2017, ''Indiewire'' [http://www.indiewire.com/2017/01/unrest-review-jennifer-brea-sundance-2017-documentary-1201774204/ ‘Unrest’ Review: A Personal Look at Chronic Fatigue Syndrome, With Powerful Results — Sundance 2017]
*Sep 21, 2017, ''NY Times'' [https://www.nytimes.com/2017/09/21/movies/unrest-review.html Review: ‘Unrest’, a Personal Account of Chronic Fatigue Syndrome]
*Oct 19, 2017 ''The Guardian'' [https://www.theguardian.com/film/2017/oct/19/unrest-review-powerful-documentary-about-chronic-fatigue-syndrome?CMP=share_btn_tw 'Unrest review – powerful documentary about chronic fatigue syndrome']
*Oct 21, 2017, ''BBC 5 Live'' [https://www.youtube.com/watch?v=NGoK56TdNQY&app=desktop Mark Kermode Review]
*Oct 22, 2017, ''The Observer'' [https://www.theguardian.com/film/2017/oct/22/unrest-review-bracingly-inventive-and-moving-documentary-me-chronic-fatigue-syndrome-jennifer-brea Unrest review – bracingly inventive and moving]
*Nov 14, 2017, ''Junkee'' [http://junkee.com/unrest-film-review-chronic-fatigue/134924 ' It’s Well Past Time For ‘Unrest’, A Game-Changing New Doco About ME/CFS']

==Screenings==
''Unrest'' has screened in cinemas and film festivals around the world.<ref>{{Cite web|url=https://www.unrest.film/screenings | title = Screenings|website=UNREST|language=en-US|access-date=2018-10-14}}</ref> ''Unrest'' has also had special screenings in the UK Houses of Parliament in London where it was shown in the State Rooms by the Speaker of the House of Commons in October 2017 attended by numerous Members of Parliaments.<ref>{{Cite web|url=http://www.meassociation.org.uk/2017/10/me-association-review-of-unrest-in-parliament-i-cannot-recall-a-parliamentary-meeting-where-we-have-had-so-much-genuine-interest-in-mecfs-26-october-2017/ | title = ME Association review of Unrest in Parliament: “I cannot recall a parliamentary meeting where we have had so much genuine interest in ME/CFS” {{!}} 26 October 2017 | last =Shepherd | first = Charles | date = Oct 26, 2017 | website = [[The ME Association]]|language=en-US|archive-url=|archive-date=|url-status=|access-date=2018-10-14}}</ref> A special screening of the film will also be shown in the Scottish Parliament in Edinburgh to be attended by MSP's on 30 January 2018.<ref>{{Cite web|url=http://www.meassociation.org.uk/2018/01/scottish-parliament-to-host-screening-of-unrest-invite-your-msp-to-attend-17-january-2018/ | title = Scottish Parliament to host screening of Unrest – Invite your MSP to attend {{!}} 17 January 2018 | website = [[The ME Association]]|language=en-US|access-date=2018-10-14}}</ref>

==Online presence==
*[http://www.unrest.film/ Official website]
*[https://en.wikipedia.org/wiki/Unrest_(2017_film) Wikipedia - Unrest (2017 film)]
*[https://www.facebook.com/unrestfilm/ Facebook page]
*[https://twitter.com/unrestfilm Twitter]
*[http://www.imdb.com/title/tt3268850/ IMDb page]
*[https://www.youtube.com/channel/UC6qt7dyl4F_MXMpHPHPJtIw YouTube channel]

==See also==
*[[What happens when you have a disease doctors can't diagnose - TED Talk (2016)]] by Jennifer Brea
==Learn more==
*[https://en.wikipedia.org/wiki/Unrest_(2017_film) Wikipedia - Unrest (2017 film)]

== References ==
{{Reflist}}

[[Category:Film]]
[[Category:TV]]

Nigel Speight

2024-02-11T16:19:18Z

Anonymous990:/* 2016 General Medical Council complaint */ add source for appeal

[[File:Nigelspeight.jpg|right]]
Doctor '''Nigel Speight''' is a semi-retired British doctor based in the North East of [[UK|England]] who specialises in [[Pediatric]] [[ME/CFS]] and has been involved in fighting many child protection cases in which children with [[ME/CFS]] were at risk of being removed from their parents. He has acted as a voluntary [[Pediatric|paediatric]] medical advisor for many [[ME/CFS]] charities.

He features in the film [[Voices from the Shadows]], a documentary about severe [[ME/CFS]].

He has been outspoken about the risks to children with [[ME/CFS]] being misdiagnosed as having a psychiatric condition.<ref name="Speight2012vfs" />

==Awards==
*Jun 29, 2017 - Exceptional Paediatrician Award from [[Tymes Trust]]<ref>https://twitter.com/tymestrust/status/880836099807039488</ref>

== Writing committees ==

===== 2011 International Consensus Criteria =====
Speight is one of the authors of the 2011 case definition, [[International Consensus Criteria]].<ref>{{Cite journal | last = Carruthers | first = Bruce M. | authorlink = Bruce Carruthers | last2 = van de Sande | first2 = Marjorie I. | authorlink2=Marjorie van de Sande | last3 = De Meirleir | first3 = Kenny L. | authorlink3=Kenny De Meirleir | last4 = Klimas | first4 = Nancy G. | author-link4 = Nancy Klimas | last5 = Broderick | first5 = Gordon | author-link5 = Gordon Broderick | last6 = Mitchell | first6 = Terry | authorlink6 = Terry Mitchell | last7 = Staines | first7 = Donald | author-link7 = Donald Staines | last8 = Powles | first8 = A.C. Peter | author-link8 = A C Peter Powles | last9 = Speight | first9 = Nigel | authorlink9 = Nigel Speight | last10 = Vallings | first10 = Rosamund | authorlink10 = Rosamund Vallings | last11 = Bateman | first11 = Lucinda | authorlink11 = Lucinda Bateman | last12 = Baumgarten-Austrheim | first12 = Barbara | authorlink12 = Barbara Baumgarten-Austrheim | last13 = Bell | first13 = David | author-link13 = David Bell | last14 = Carlo-Stella | first14 = Nicoletta | author-link14 = Nicoletta Carlo-Stella | last15 = Chia | first15 = John | author-link15 = John Chia | last16 = Darragh | first16 = Austin | author-link16 = Austin Darragh | last17 = Jo | first17 = Daehyun | author-link17 = Daehyun Jo | last18 = Lewis | first18 = Donald | author-link18 = Donald Lewis | last19 = Light | first19 = Alan | author-link19 = Alan Light | last20 = Marshall-Gradisnik | first20 = Sonya | author-link20 = Sonya Marshall-Gradisnik | last21 = Mena | first21 = Ismael | author-link21 = Ismael Mena | last22 = Mikovits | first22 = Judy | author-link22 = Judy Mikovits | last23 = Miwa | first23 = Kunihisa | author-link23 = Kunihisa Miwa | last24 = Murovska | first24 = Modra | author-link24 = Modra Murovska | last25 = Pall | first25 = Martin | author-link25 = Martin Pall | last26 = Stevens | first26 = Staci | author-link26 = Staci Stevens | date = 2011-08-22 | title=Myalgic encephalomyelitis: International Consensus Criteria|url=https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2796.2011.02428.x|journal=Journal of Internal Medicine|language=en|volume=270|issue=4|pages=327–338|doi=10.1111/j.1365-2796.2011.02428.x|issn=0954-6820|pmc=3427890|pmid=21777306|via=}}</ref>

=====2017 Pediatric Primer=====
Dr. Speight was one of the authors of the 2017 Pediatric Primer published in ''Frontiers in Pediatrics.''
* ''Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer'' by [[Peter Rowe|Peter C. Rowe]], [[Rosemary Underhill|Rosemary A. Underhill]], [[Kenneth Friedman|Kenneth J. Friedman]], [[Alan Gurwitt]], [[Marvin Medow|Marvin S. Medow]], [[Malcolm Schwartz|Malcolm S. Schwartz]], Nigel Speight, [[Julian Stewart|Julian M. Stewart]], [[Rosamund Vallings]] and [[Katherine Rowe|Katherine S. Rowe]]<ref name="Rowe, et al, 2017" /> [http://journal.frontiersin.org/article/10.3389/fped.2017.00121/full (Full Text)]

==2016 General Medical Council complaint==
In 2016 Dr. Speight was subject of a complaint to the [https://en.wikipedia.org/wiki/General_Medical_Council General Medical Council], the organisation responsible for maintaining the register of doctors licensed to practice medicine in the UK. The substance of the complaint and the identity of the person who made it were not made public. As a result of the complaint, the GMC imposed limits on Dr Speight's medical license, restricting him to working in NHS posts as a consultant general paediatrician but forbidding him to carry out any work in relation to ME/CFS, including unpaid work. The restriction holds until July 2017.<ref name="#MEAction20160423speight" />

The ME Association immediately sent a detailed letter to the GMC in support of Dr Speight, and coordinated a further, joint letter of support from ME/CFS charities, professional colleagues and parents of children with ME/CFS in the UK and abroad.<ref name="MEASSUK201604speight" />

Dr. Speight issued a public statement on the situation.<ref name="MEASSUK201604speight" /> Meanwhile, an e-card<ref name="Speight2016ecard" /> in support of Dr Speight received over 1,000 signatures and messages in less than 48 hours.

The limits were overturned on appeal.<ref>[https://meassociation.org.uk/2016/10/dr-nigel-speight-some-excellent-news-from-the-general-medical-council-12-october-2016/ Dr Nigel Speight – some excellent news from the General Medical Council | 12 October 2016] ME Association</ref>

==Background==

Dr. Speight was born in [[India]], where his father was a missionary doctor. Dr Speight left India when he was 10 and went to secondary school at Merchant Taylors' School, Crosby (Merseyside). He qualified in 1966 from Cambridge and University College Hospital, worked as a junior doctor in London and then taught at the new medical school in Dar es Salaam, Tanzania.

When he returned to the UK four years later, he changed from Adult Medicine to Paediatrics and did his paediatric training in Newcastle. In 1982 he became a consultant and took up his post in Durham, where he worked for 25 years.

He developed special interests in childhood asthma, food intolerance, child abuse and neglect, emotional and behavioural problems and ADHD.

He retired in 2007 but works in locum posts for several months a year.

He is married and has four children and four grandchildren. He is a keen cyclist, and has cycled in Ecuador, Cuba, Jordan, and South India, and from Land's End to John O'Groats in the UK.

==Work in ME/CFS==
{{Video|id=https://www.youtube.com/watch?v=kl5EfvzsL88|service=youtube|dimensions=550|description=Dr. Nigel Speight on Paediatric ME/CFS (2014). Stockholm, Sweden.|alignment=right|urlargs=start=20&rel=0&autoplay=0}}
Dr. Speight became interested in ME/CFS from around 1984, when he was consulted by a young girl in a wheelchair who announced that she had ME, which at the time, he knew nothing about. Lectures by Dr. Betty Dowsett, Alan Franklin and Dr. [[David Bell]] helped develop his interest in the topic.<ref name="23MEGRPadvisors" />

Over the next 20 years he saw over 500 cases, all over the UK, and gave numerous lectures to medical audiences around the country on the subject.<ref name="23MEGRPadvisors" />

He served on the Chief Medical Officer’s Working Party, which reported in 2002, and on the College of Paediatrics Guidelines group. He gave evidence to the Gibson Inquiry and on three occasions talked to the ME interest group at the Scottish Parliament.<ref name="23MEGRPadvisors" />

He has worked as an honorary paediatric medical adviser for several UK ME/CFS charities, including the [[ME Association]], the [[Tymes Trust]], the [[25 Percent ME Group]], [[Action for ME]], and the [[Association of Young People with ME]]. He resigned from the latter group in 2009 when their “paths diverged”.<ref name="23MEGRPadvisors" />

Writing about his work, he has said:

<blockquote>“The most distressing cases I have encountered were those in which families were being subjected to Child Protection proceedings. This was usually due to the failure of the local doctors to officially diagnose ME, or for them to diagnose it but to imply it wasn’t a real, i.e., organic condition. This left the families open to alternative explanations such as neglect, emotional abuse or Munchausen Syndrome by Proxy. I was involved in more than 20 of these cases around the country and am proud to have been instrumental in reversing the proceedings in all but a small handful.”<ref name="23MEGRPadvisors" /></blockquote>

==Open Letter to ''The Lancet''==
Two [[open letter to the Lancet | open letters to the editor of ''The Lancet'']] urged the editor to commission a fully independent review of the [[PACE trial]], which the journal had published in 2011. In 2016, Dr. Speight, along with 41 colleagues in the [[ME/CFS]] field, signed the second letter.
*10 February 2016, [http://www.virology.ws/2016/02/10/open-letter-lancet-again/ An open letter to The Lancet, again - Virology blog]

==Talks and interviews==
Dr Speight has recorded a number of video interviews:
*[https://www.youtube.com/watch?v=208JacsB5kM 'Exercise and ME/CFS']: 2014 talk given at Bristol Watershed.
*[https://www.youtube.com/watch?v=kl5EfvzsL88 Dr. Nigel Speight: 'Paediatric ME/CFS']: 2014 talk given at Stockholm, Sweden.

The following interviews were given (in English) in 2014 with the Dutch group, Wetenschap voor Patienten ("Science for Patients"): (engels gesproken, nederlandse ondertiteling)

*2014 [https://www.youtube.com/watch?v=XcRZo1vO53c 28. Interview with Dr Nigel Speight / Interview met Dr. Nigel Speight]
*2014 [https://www.youtube.com/watch?v=aMBUN5nQZUc 30. Diagnostic tools for ME / Diagnostische handvatten voor ME - Dr. Nigel Speight]
*2014 [https://www.youtube.com/watch?v=xJLxWOqgDoc 34. Future and hope - Toekomst en hoop - Dr. Nigel Speight]
*2014 [https://www.youtube.com/watch?v=-W2BSN_Cg-g 32. ME and children - Part 1 - ME en kinderen deel 1 -Dr. Nigel Speight]
*2014 [https://www.youtube.com/watch?v=1tWPzdmSKGE 33. ME and children - Part 2 - ME en kinderen deel 2 - Dr. Nigel Speight]
*2014 [https://www.youtube.com/watch?v=eBCuwTy6LWM 29. What is ME and what is CFS? - Dr. Nigel Speight]
*2014 [https://www.youtube.com/watch?v=XgBSZtc-NpU 31. ME/CFS and the course of the disease - Dr. Nigel Speight]
*Feb 18, 2019 - Dr Nigel Speight interviewed on [[The ME Show]] by [[Gary Burgess]] on fighting for families whose parents have been accused of abuse, rather than their child's ME being diagnosed ([https://www.buzzsprout.com/172265/941924-episode-four-dr-nigel-speight Episode Link)]

==Notable articles and publications==
*2021, Life-Threatening Malnutrition in Very Severe ME/CFS<ref name="Baxter2021">{{Cite journal | last = Baxter | first = Helen | last2 = Speight | first2 = Nigel | authorlink2 = Nigel Speight | last3 = Weir | first3 = William | authorlink3 = William Weir | date = 2021 | journal=Healthcare|volume=9|issue=4 | page = 459|url=https://www.mdpi.com/2227-9032/9/4/459/htm | title = Life-Threatening Malnutrition in Very Severe ME/CFS|doi=10.3390/healthcare9040459}}</ref> - [https://www.mdpi.com/2227-9032/9/4/459/htm (Full text)]
*2021, ME/CFS: Past, Present and Future<ref name="Weir2021future">{{Cite journal | last = Weir | first = William | authorlink= William Weir | last2 = Speight | first2 = Nigel | authorlink2 = Nigel Speight | date = 2021 | title = ME/CFS: Past, Present and Future|journal=Healthcare|volume=9|issue=8 | page = 984|url=https://www.mdpi.com/2227-9032/9/8/984/htm|doi=10.3390/healthcare9080984}}</ref> - [https://www.mdpi.com/2227-9032/9/8/984/htm (Full text)]
*2020, Severe ME in Children<ref name="SpeightSevere">{{Cite journal | last = Speight | first = Nigel | authorlink=Nigel Speight | date = 2020 | title = Severe ME in Children|journal=Healthcare|volume=8|issue=3 | page = 211|url=https://www.mdpi.com/2227-9032/8/3/211/htm |doi=10.3390/healthcare8030211 }}</ref> - [https://www.mdpi.com/2227-9032/8/3/211/htm (Full text)]

==Learn more==
*[[Sick and Tired - BBC]] (TV show featuring Dr Speight)

==See also==
*[[ME Association]]
*[[NHS]]
*[[25 Percent ME Group]]
*[[Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer]]
*[[Medical neglect and abuse]]
*[[Fabricated Induced Illness]] (Munchausen's by Proxy

==References==
<references>
<ref name="23MEGRPadvisors">{{citation | author = 25% ME Group | authorlink1 = 25 Percent ME Group | title = Meet our Patrons and Advisors
| access-date = 27 Apr 2016
| url = http://25megroup.org/advisors.html }}</ref>
<ref name="#MEAction20160423speight">{{citation | last1 = #MEAction | authorlink1 = #MEAction | title = GMC limits Dr Speight's license | website = #MEAction | date = 23 Apr 2016
| url = http://www.meaction.net/2016/04/23/gmc-limits-dr-nigel-speights-license-charities-fight-back/ }}</ref>
<ref name="MEASSUK201604speight">{{citation | last1 = ME Association (UK) | authorlink1 = ME Association | title = GMC impose conditions on Dr Nigel Speight’s licence to practice | date = 23 April 2016
| url = http://www.meassociation.org.uk/2016/04/mea-statement-on-gmc-decision-to-impose-conditions-on-dr-nigel-speights-licence-to-practice-23-april-2016/ }}</ref>
<ref name="Speight2012vfs">{{citation | last1 = Speight | first1 = Nigel | authorlink1 = Nigel Speight | title = Myalgic Encephalomyelitis (ME) in Childhood | journal = Voices from the Shadows (website) | date = 2012
| url = http://voicesfromtheshadowsfilm.co.uk/nigel-speight-me-handout/ }}</ref>
<ref name="Speight2016ecard">{{citation | title = e-Card to Dr. Nigel Speight | date = 27 Apr 2016
| url = http://www.groupcard.com/c/1pOfl_wAToT }}</ref>
<ref name="Rowe, et al, 2017">{{Citation | last1 = Rowe | first1 = Peter C. | authorlink1 = Peter Rowe | last2 = Underhill | first2 = Rosemary A. | authorlink2 = Rosemary Underhill | last3 = Friedman | first3 = Kenneth J. | authorlink3 = Kenneth Friedman | last4 = Gurwitt | first4 = Alan | authorlink4 = Alan Gurwitt | last5 = Medow | first5 = Marvin S. | authorlink5 = Marvin Medow | last6 = Schwartz | first6 = Malcolm S. | authorlink6 = Malcolm Schwartz | last7 = Speight | first7 = Nigel | authorlink7 = Nigel Speight | last8 =Stewart | first8 = Julian M. | authorlink8 = Julian Stewart | last9 = Vallings | first9 = Rosamund | authorlink9 = Rosamund Vallings | last10 = Rowe | first10 = Katherine S. | authorlink10 = Katherine Rowe | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer | journal = Frontiers in Pediatrics | volume = 5 | issue = 121 | page = | date = 2017 | pmid = | doi = 10.3389/fped.2017.00121 }}</ref>
</references>
[[Category:Clinicians]]
[[Category:British clinicians]]
[[Category:Psychological paradigm critics]]
[[Category:PACE trial critics]]

Autopsy in Myalgic Encephalomyelitis

2023-12-26T15:28:39Z

Anonymous990:/* Prusty 2022 study */

== Brain ==

=== Enteroviruses ===
Three post-mortem studies have found [[enterovirus]] infections in the [[brains]] of [[myalgic encephalomyelitis]] / [[chronic fatigue syndrome]] patients:

==== McGarry 1994 study ====
In 1994 McGarry, Gow and [[Peter Behan|Behan]] published an autopsy study<ref name="pmid8172448">{{cite journal | author=McGarry| title=Enterovirus in the chronic fatigue syndrome | journal=Ann Intern Med | year= 1994 | volume= 120 | issue= 11 | pages = 972-3 | pmid=8172448 | doi= | pmc= | url=https://www.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pubmed&tool=sumsearch.org/cite&retmode=ref&cmd=prlinks&id=8172448 | first = F | date = |via= | last2 = Gow | first2 = J | last3 = Behan | first3 = PO | author-link3 = Peter Behan}}</ref> of a 30 year old female who had [[ME/CFS]] for 5 years and died of complications after a suicide attempt. Brain samples were obtained from the frontal, temporal, parietal and occipital cortices and from the mid-brain, [[hypothalamus]] and brainstem. Using PCR, [[enteroviral]] [[RNA]] was found in the heart, [[muscle]]s, hypothalamus and brainstem of this patient. The RNA showed an 83% homology to [[Coxsackievirus B3|coxsackie B3 virus]]. Control tissue samples taken from 8 brains (four patients who died of cerebrovascular diseases, and four others who had depression and died by suicide) showed no evidence of enteroviral RNA.

==== Richardson 2001 study ====
The [[John Richardson]] 2001 study<ref name="Richardson2011">{{cite journal | last1 = Richardson | first1 = J. | title = Viral Isolation from Brain in Myalgic Encephalomyelitis | journal = Journal of Chronic Fatigue Syndrome | volume = 9 | issue = 3-4| year = 2001 | pages = 15–19|issn=1057-3321|doi=10.1300/J092v09n03_03 | url = https://www.tandfonline.com/doi/abs/10.1300/J092v09n03_03 | date = |via= | author-link = John Richardson}}</ref> examined the brain tissues of a male ME/CFS patient who died from suicide by hanging. This patient had high titers to [[coxsackie B1 virus]], and also titers to [[Coxsackievirus B4|coxsackie B4 virus]]. Brain tissue samples were sent to Professor [[James Mowbray]], who used immunoperoxidase staining with monoclonal antibody D8/1 to detect enteroviral VP1 protein. Enterovirus VP1 protein was found in fibroblasts in the adventitia of small blood vessels in the cerebral cortex, and there was a patchy distribution of the VP1 protein in a small fraction of the [[glial cells]]. Note that most glial cells are astrocytes, and one study found [[coxsackie B]] virus can create a persistent infection in human astrocyte cells lines,<ref>{{Cite journal | last = Zhang | first = Xiaowei | last2 = Zheng | first2 = Zhenhua | last3 = Shu | first3 = Bo | last4 = Liu | first4 = Xijuan | last5 = Zhang | first5 = Zhenfeng | last6 = Liu | first6 = Yan | last7 = Bai | first7 = Bingke | last8 = Hu | first8 = Qinxue | last9 = Mao | first9 = Panyong | date = 2013-11-15 | title = Human Astrocytic Cells Support Persistent Coxsackievirus B3 Infection | url =https://jvi.asm.org/content/87/22/12407 | journal = Journal of Virology|language=en | volume = 87 | issue = 22 | pages = 12407–12421|doi=10.1128/JVI.02090-13|issn=0022-538X|pmc=3807905|pmid=24027313|via=}}</ref> and another found coxsackie B virus can replicate in the astrocytes of mice brains.<ref>{{Cite journal | last = Zeng | first = Jun | last2 = Wang | first2 = Gefei | last3 = Li | first3 = Weizhong | last4 = Zhang | first4 = Dangui | last5 = Chen | first5 = Xiaoxuan | last6 = Xin | first6 = Gang | last7 = Jiang | first7 = Zhiwu | last8 = Li | first8 = Kangsheng| date = 2013 | title = Induction of cytopathic effect and cytokines in coxsackievirus B3-infected murine astrocytes |url =https://virologyj.biomedcentral.com/articles/10.1186/1743-422X-10-157 | journal = Virology Journal|language=en | volume = 10 | issue = 1 | pages = 157|doi=10.1186/1743-422x-10-157|issn=1743-422X|pmc=3680086|pmid=23693026|via=}}</ref>

==== Chia 2015 study ====
A | 2015 study<ref name=":0">{{Cite web | url = https://forums.phoenixrising.me/index.php?threads/are-infections-just-a-trigger-of-me-cfs-or-an-ongoing-cause-of-me-cfs.37549/page-25#post-632251 | title = Chronic enterovirus infection in a patient with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) – clinical, virologic and pathological analysis. John Chia, David Wang, Andrew Chia, Rabiha El-Habbal. 2015. Presented at the 19th International Picornavirus Meeting, 2016. | date = |access-date= | website = | last = | first = |archive-url=|archive-date=|url-status=}}</ref> by [[John Chia]] looked at the brain tissues of another ME/CFS patient, a 23 year old male with high titers to [[echovirus]] 11 who who committed suicide 6 years after the onset of symptoms. Using Western blot, Chia found evidence of enterovirus infection in the pontomedullary junction and midbrain (both are in the brainstem), medial temporal lobe, lateral frontal cortex, occipital lobe and cerebellum. And by RT-PCR, Chia found enterovirus RNA in the frontal cortex, pontomedullary junction. When the virus was sequenced, they found a 92% homology to CVB2, and about 86% to echovirus 30.<ref>{{Cite web | url = http://www.investinme.org/IIMEC10.shtml | title = Dr John Chia's presentation at the Invest in ME London Conference 2015 (available on DVD), timecode 27:32. | last = | first = | date = | website = | archive-url = | archive-date = |url-status = | access-date=}}</ref>

Interestingly enough, the first time Chia used RT-PCR to find enterovirus RNA in this patient's brain tissue, he got a negative result. But Chia remembered a phenomenon whereby viral RNA may bind to chromosomal [[DNA]], preventing RT-PCR from detecting the RNA. So Chia used the DNase [[enzyme]] to digest the chromosomal DNA in the brain tissue, and after doing this, he was able to find enterovirus RNA in the frontal cortex and pontomedullary junction.<ref>{{Cite web | url = http://www.investinme.org/IIMEC10.shtml | title = Dr John Chia's presentation at the Invest in ME London Conference 2015 (available on DVD), timecode 26:46 | date = |access-date= | website = | last = | first = | archive-url = | archive-date = |url-status = | quote=So when we did our RT-PCR again it's completely negative. That's the positive control here, negative control here. Then we remembered one phenomena: so we actually use the DNase to try to digest any chromosomal DNA off this RNA. We think they are attached like this. Then we repeated the RT-PCR: then we saw the band here, for the pontomedullaryjunction, and this one's the frontal cortex, here's the positive strand, the positive control and negative control. Then we sequenced it: this is our top band for the pontomedullary junction, OK, and that's clearly different from the positive control. And that was about 92% homology to CVB2, about 86% to echovirus 30.}}</ref>

Dr Chia points out that an enterovirus infection in the stomach can travel along the [[vagus nerve]] (via reverse axonal transport) and reach the brainstem in around 3 days. In this way, the virus can bypass the [[blood-brain barrier]], and enter into the brainstem, infecting the brain.<ref>{{Cite web | url = https://www.youtube.com/watch?v=obHtCwhg3-0&t=2m20s | title = Dr John Chia's presentation at the State of Knowledge Workshop on ME/CFS, National Institutes of Health, April 2011, day 1, part 1, timecode 2:20. | date = |access-date= | website = | last = | first = |archive-url=|archive-date=|url-status=}}</ref> Chia also questions the common wisdom that in brain infection, you will find the virus in the cerebrospinal fluid: he points out this is not always true in the case of enterovirus, because even in acute enterovirus 71 infection, only 5% of the cerebrospinal fluid samples are positive, and ME/CFS does not involve an acute brain infection, but rather a chronic one. Dr Chia points out that in ME/CFS, enterovirus infections are found in the tissues, not really so much in the blood and fluids.<ref>{{Cite web | url = https://www.youtube.com/watch?v=BO-yxqZuXTY&t=9m34s | title = Dr John Chia's presentation at the State of Knowledge Workshop on ME/CFS, National Institutes of Health, April 2011, day 1, part 2, timecode 9:33. | last = | first = | date = | website = | archive-url = | archive-date = |url-status = | access-date=}}</ref> This is because the persistent enterovirus infections found in the tissues of ME/CFS patients are of the aberrant [[non-cytolytic enterovirus]] form.

The following table summarizes the areas of the brains of ME/CFS patients in which enterovirus infection was found post-mortem:
{| class="wikitable" cellpadding="0"
!Brain Study
!Date
!Enterovirus Infected Areas in Red
!Enterovirus Testing Method
!Areas Of Brain Found Infected With Enterovirus
|- style="background-color: white;"
|McGarry, Gow and Behan <ref name="pmid8172448" />
|1994
|[[File:Brain Small McGarry Brain Autopsy.jpg|frameless|200x200px]]
|PCR
|Hypothalamus and brainstem.
|- style="background-color: white;"
|John Richardson <ref name="Richardson2011" />
|2001
|[[File:Brain Small Richardson Brain Autopsy.jpg|frameless|200x200px]]
|VP1 protein stain
|Fibroblasts in the adventitia of small blood vessels in the cerebral cortex, and also in a small fraction of the glial cells.
|- style="background-color: white;"
| rowspan="2" |John Chia <ref name=":0" />
| rowspan="2" |2015
| rowspan="2" |[[File:Brain Small Chia Brain Autopsy.jpg|frameless|200x200px]]
|Western blot

|Pontomedullary junction and midbrain (both are in the brainstem), medial temporal lobe, lateral frontal cortex, occipital lobe and cerebellum.
|- style="background-color: white;"
|RT-PCR
|Frontal cortex, pontomedullary junction.
|}

=== Herpesviruses ===

==== Prusty 2022 study ====
Dr Bhupesh K Prusty and colleagues in a post-mortem study found evidence of active HHV-6 infection in the brain tissues of 2 out of 3 ME/CFS patients, whereas none of the 3 controls had active HHV-6 infection in their brain tissues.<ref>{{Cite journal | title = Tissue specific signature of HHV-6 infection in ME/CFS| date = 2022 | url = https://www.frontiersin.org/articles/10.3389/fmolb.2022.1044964 | journal = Frontiers in Molecular Biosciences | volume = 9 | last = Kasimir | first =Francesca | last2=Toomey | first2 = Danny | last3 = Liu | first3 = Zheng | last4 = Kaiping | first4 = Agnes C. | last5 = Ariza | first5 = Maria Eugenia | last6 = Prusty | first6 = Bhupesh K.|doi=10.3389/fmolb.2022.1044964/full|issn=2296-889X}}</ref>

*

== Spine ==
[[Inflammation]] of the [[dorsal root ganglia]] (ganglionitis) has been found in the autopsies of several [[Severe and very severe ME|very severely ill]] [[myalgic encephalomyelitis]] <nowiki/>patients including [[Lynn Gilderdale]], [[Sophia Mirza]] and [[Merryn Crofts]].{{Citation needed|reason=}}

== Other post-mortem findings ==
The results of the autopsies of four ME/CFS patients were presented at the International Science Symposium on ME/CFS, 2010, Bond University, Australia.<ref>{{Cite web | url = http://www.meassociation.org.uk/wp-content/uploads/2011/01/Ros-Vallings-report.doc | title = Pathology of Chronic Fatigue Syndrome: Pilot Study of Four Autopsy Cases. DG O’Donovan, T Harrower, S Cader, LJ Findley, C Shepherd, A Chaudhuri. Presented at the International Science Symposium on ME/CFS, 2010, Bond University, Australia. | date = |access-date= | website = | last = | first = |archive-url=|archive-date=|url-status=}}</ref> These autospy studies were not looking for enterovirus, but examined the general features of the brain and nervous system.

* A 32 year old male had ME/CFS for 20 years and died of suicide by medication overdose. The autopsy showed excess corpora amylacea in the [[spinal cord]] and [[brain]]. There were intermediate filaments closely related to glial cells, and maybe within the glia rather than the axons. No evidence of ganglionitis. (EBV negative).
* A 32 year old female had ME/CFS for 5 years. She refused medical help, was bedridden and refused food and water. She finally died of renal failure. The autopsy showed a focal chronic inflammatory infiltrate (T8 lymphocyes) in the [[dorsal root ganglia]]. ([[Epstein-Barr virus|EBV]] negative).
* A 43 year old female arranged for assisted suicide in Switzerland by barbiturate overdose. The brain showed global ischemia, but this was likely due to the drugs used. Dorsal root ganglia showed mild excess of lymphocytic nodules of nageotte but with no obvious inflammation, but this could represent a subtle chronic inflammatory state.
* A 31 year old female with ME/CFS may have died from opiate ingestion. She had toxic demyelination with spinal subarachnoid hemorrhage, but she was on warfarin. There was some mild possible chronic ganglionitis.
Autopsies of two patients who died from other causes several months after contracting ME/CFS in the 1955 [[1955 Royal Free Hospital outbreak|Royal Free hospital outbreak]] revealed distinct brain abnormalities in one case, but not in the other:<ref>{{Cite journal | last = Crowley | first = Nuala | last2 = Nelson | first2 = Merran | last3 = Stovin | first3 = Sybille | date = Mar 1957 | title = Epidemiological aspects of an outbreak of encephalomyelitis at the Royal Free Hospital, London, in the summer of 1955 | url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2217874/ | journal = The Journal of Hygiene | volume = 55 | issue = 1 | pages = 102–122|issn=0022-1724|pmc=2217874|pmid=13416578}}</ref>
* A 32 year old female had had ME/CFS for 7 months at the time of death (due to barbiturate poisoning). A brain post-mortem showed small grey or yellowish plaques in the white matter of the cerebral hemispheres (mainly paraventricular in distribution), in the brain stem, and in the spinal cord (particularly in the cervical segment). Microscopic brain tissue examination showed multiple areas of demyelination with associated microglia and astrocyte proliferation and gliosis. One section from the hypothalamus showed intense perivascular cuffing (accumulation of lymphocytes or plasma cells), which it was concluded could be due to viral encephalitis, or due an unusual reaction associated with the white matter sclerosis .
* The other Royal Free epidemic ME/CFS patient autopsied was found to have septicemia, clostridial peritonitis and ovarian carcinoma with multiple metastases. Microscopic examination of the brain, spinal cord and peripheral nerves showed no abnormalities except for those attributable to the septicemia or the disseminated carcinoma.
== See also ==

*[[Coxsackie B virus]]
*[[Echovirus]]
*[[Enterovirus]]
*[[Enterovirus infection studies]]
*[[John Chia]]
*[[John Richardson]] | last4
*[[Non-cytolytic enterovirus]] | last4
*[[Peter Behan]]

== Links ==
Full text versions of the enterovirus post-mortem brain studies [https://forums.phoenixrising.me/index.php?threads/are-infections-just-a-trigger-of-me-cfs-or-an-ongoing-cause-of-me-cfs.37549/page-25#post-632251 here].

== References ==
{{Reflist}}
[[Category:Tests]]
[[Category:Central nervous system]]
[[Category:Neurology]]

Checklist Individual Strength

2023-12-19T13:23:27Z

Anonymous990:/* Ceiling effects */ add space

The '''Checklist Individual Strength (CIS)''' is a 20-item fatigue questionnaire developed by the Dutch research team of Vercoulen et al. in 1994.<ref name=":0">{{Cite journal | last = Vercoulen | first = J.H. | last2 = Swanink | first2 = C.M. | last3 = Fennis | first3 = J.F. | last4 = Galama | first4 = J.M. | last5 = van der Meer | first5 = J.W. | last6 = Bleijenberg | first6 = G. | date = Jul 1994 | title = Dimensional assessment of chronic fatigue syndrome | url =https://www.ncbi.nlm.nih.gov/pubmed/7965927 | journal = Journal of Psychosomatic Research | volume = 38 | issue = 5 | pages = 383–392|issn=0022-3999|pmid=7965927}}</ref> The questionnaire has been translated into multiple languages and is used in various illnesses, including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). An 8-item subscale of CIS that measures subjective fatigue regularly acts as a primary outcome in randomized trials on the effects cognitive behavior therapy in ME/CFS. The use of this subscale in a ME/CFS patient population however has been criticized for displaying ceiling effects.

== Background ==

=== Origin ===
The Checklist Individual Strength (Checklist individuele Spankracht) was developed by the Dutch research team of Vercoulen et al. in 1994 at the universities of Amsterdam and Rotterdam.<ref name=":0" /> CIS was intended to be a questionnaire to test the “behavioural, emotional, social, and cognitive aspects” of ME/CFS and to identify the multiple dimensions of ME/CFS patients’ disability.

===20 questions, 4 subscales: ===
Initially the questionnaire consisted of 24 items but after testing in 298 patients who suffered from unexplained chronic fatigue for more than a year, 4 items were removed.<ref name=":0" /> The factor analysis indicated 4 components<ref name=":0" /> in the remaining 20 questions. These were easy to interpret and were called:
# Subjective fatigue (8 items)
# Concentration (5 items)
# Motivation (4 items)
# Physical activity (3 items)

=== 1-7 Likert score: ===
The CIS consists of 20 statements on fatigue-related problems respondents might have experienced in the past 2 weeks.<ref name=":1">https://meetinstrumentenzorg.blob.core.windows.net/test-documents/Instrument160/160_1_N.pdf</ref> A Likert scoring scheme is used. With each statement respondents have to indicate a score from 1 to 7, indicating either “yes, that is true” or “no, that is not true.” Examples of statements are: “I feel tired”, “I have trouble concentrating” or “, I don’t do much during the day” etc.<ref>https://meetinstrumentenzorg.blob.core.windows.net/documents/Instrument160/CIS%20meetinstr.pdf</ref> Almost half of the questions are inverted, meaning the statements indicate fitness instead of fatigue and the scoring system is reversed. “Yes, that is true” would then indicate a score of 1 instead of 7. Examples of such statements are: “. I feel fit, “I feel rested” or “I am full of plans”.<ref name=":2">https://www.me-pedia.org/images/f/f8/Checklist_Individual_Strength_overzicht.pdf</ref>

== Reliability ==

=== Internal consistency ===
CIS has shown good internal consistency, with a Cronbach alpha of 0.90<ref name=":3">{{Cite web | url = https://openaccess.leidenuniv.nl/handle/1887/23044 | title = NormQuest : reference values for ROM instruments and questionnaires | last = Schulte-van Maaren | first = Yvonne Wilhelmina Maria | last2 = LUMC | date = Jan 21, 2014 | website = openaccess.leidenuniv.nl|language=en|access-date=2019-02-17}}</ref> and a Gutman split-half reliability coefficient of 0.92.<ref name=":0" /><ref name=":1" />

=== Convergent validity ===
Research has shown that the results of the CIS are comparable to those other measure of fatigue, such as fatigue measured on a unidimensional five point Likert scale or the scale exhaustion of the Maslach burnout inventory—general survey (MBI-GS).<ref name=":4">{{Cite journal | last = Beurskens | first = A.J. | last2 = Bültmann | first2 = U. | last3 = Kant | first3 = I. | last4 = Vercoulen | first4 = J.H. | last5 = Bleijenberg | first5 = G. | last6 = Swaen | first6 = G.M. | date = May 2000 | title = Fatigue among working people: validity of a questionnaire measure | url =https://www.ncbi.nlm.nih.gov/pubmed/10769302 | journal = Occupational and Environmental Medicine | volume = 57 | issue = 5 | pages = 353–357|issn=1351-0711|pmc=1739950|pmid=10769302}}</ref> Using a large sample of 351 persons of the working population, De Vries et al. showed that the CIS correlated with other fatigue questionnaires such as the Chalder Fatigue Scale.<ref>{{Cite journal | last = De Vries | first = J | last2 = Michielsen | first2 = H | last3 = Van Heck | first3 = G L | date = Jun 2003 | title = Assessment of fatigue among working people: a comparison of six questionnaires |url =https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1765720/ | journal = Occupational and Environmental Medicine | volume = 60 | issue = Suppl 1 | pages = i10–i15|doi=10.1136/oem.60.suppl_1.i10|issn=1351-0711|pmc=1765720|pmid=12782741}}</ref> In other studies, the concentration subscale of the CIS correlated with the subscale concentration problems of the Sickness Impact Profile (SIP),<ref>{{Cite journal | last = Vercoulen | first = JH | last2 = Swanink | first2 = CM | last3 = Fennis | first3 = JF | last4 = Galama | first4 = JM | last5 = van der Meer | first5 = JW | last6 = Bleijenberg | first6 = G | date = 1996-05-01 | title = Prognosis in chronic fatigue syndrome: a prospective study on the natural course. | url = http://dx.doi.org/10.1136/jnnp.60.5.489 | journal = Journal of Neurology, Neurosurgery & Psychiatry | volume = 60 | issue = 5 | pages = 489–494|doi=10.1136/jnnp.60.5.489|issn=0022-3050}}</ref> while the subscale fatigue severity correlated with activity levels measured by an Actometer.<ref>{{Cite journal | last = Vercoulen | first = J.H.M.M. | last2 = Bazelmans | first2 = E. | last3 = Swanink | first3 = C.M.A. | last4 = Fennis | first4 = J.F.M. | last5 = Galama | first5 = J.M.D. | last6 = Jongen | first6 = P.J.H. | last7 = Hommes | first7 = O. | last8 = Van Der Meer | first8 = J.W.M. | last9 = Bleijenberg | first9 = G. | date = Nov 1997 | title = Physical activity in chronic fatigue syndrome: Assessment and its role in fatigue | url =http://dx.doi.org/10.1016/s0022-3956(97)00039-3 | journal = Journal of Psychiatric Research | volume = 31 | issue = 6 | pages = 661–673|doi=10.1016/s0022-3956(97)00039-3|issn=0022-3956}}</ref>

=== Discriminative validity ===
Discriminative validity of the CIS was tested by Beurskens et al.<ref name=":4" /> in five sets of employees with expected differences in fatigue. The CIS was able to differentiate between healthy employees and those with a somatic or mental reason for fatigue. Vercoulen et al. showed that the CIS discriminates between ME/CFS patients from healthy controls and patients with functional bowel syndrome<ref name=":0" /> or multiple sclerosis.<ref>{{Cite journal | last = Vercoulen | first = J.H. | last2 = Hommes | first2 = O.R. | last3 = Swanink | first3 = C.M. | last4 = Jongen | first4 = P.J. | last5 = Fennis | first5 = J.F. |last6 = Galama | first6 = J.M. | last7 = van der Meer | first7 = J.W. | last8 = Bleijenberg | first8 = G. | author-link8 = Gijs Bleijenberg | date = Jul 1996 | title = The measurement of fatigue in patients with multiple sclerosis. A multidimensional comparison with patients with chronic fatigue syndrome and healthy subjects |url =https://www.ncbi.nlm.nih.gov/pubmed/8929171 | journal = Archives of Neurology | volume = 53 | issue = 7 | pages = 642–649|issn=0003-9942|pmid=8929171}}</ref>

== Use ==

=== Multiple languages and diseases ===
The CIS has been translated into different languages, including English, Portuguese,<ref>{{Cite journal | last = Maes | first = Stan | last2 = Leal | first2 = Isabel | last3 = Cordeiro | first3 = Andreia | last4 = Gouveia | first4 = Maria João | last5 = Gucht | first5 = Véronique De | last6 = Marques | first6 = Marta | date = 2013-03-28 | title = Psychometric Properties of the Portuguese Version of the Checklist of Individual Strength (CIS20-P) | url = https://pch.psychopen.eu/article/view/57 | journal = Psychology, Community & Health|language=en | volume = 2 | issue = 1 | pages = 11–18|doi=10.5964/pch.v2i1.57|issn=2182-438X}}</ref> Polish,<ref>{{Cite journal | last = Makowiec-Dabrowska | first = Teresa | last2 = Koszada-Włodarczyk | first2 = Wiesława | date = 2006 | title=[The CIS20R Questionnaire and its suitability for prolonged fatigue studies] | url = https://www.ncbi.nlm.nih.gov/pubmed/17133914 | journal = Medycyna Pracy | volume = 57 | issue = 4 | pages = 335–345|issn=0465-5893|pmid=17133914}}</ref> Japanese<ref>{{Cite journal | last = Aratake | first = Yutaka | last2 = Tanaka | first2 = Katsutoshi | last3 = Wada | first3 = Koji | last4 = Watanabe | first4 = Mayumi | last5 = Katoh | first5 = Noritada | last6 = Sakata | first6 = Yumi | last7 = Aizawa | first7 = Yoshiharu | date = Nov 2007 | title = Development of Japanese version of the checklist individual strength questionnaire in a working population | url =https://www.ncbi.nlm.nih.gov/pubmed/18075205 | journal = Journal of Occupational Health | volume = 49 | issue = 6 | pages = 453–460|issn=1341-9145|pmid=18075205}}</ref> and Turkish.<ref>{{Cite journal | last = Ergin | first = Gülbin | last2 = Yildirim | first2 = Yücel | date = Nov 2012 | title = A validity and reliability study of the Turkish Checklist Individual Strength (CIS) questionnaire in musculoskeletal physical therapy patients |url =https://www.ncbi.nlm.nih.gov/pubmed/22324761 | journal = Physiotherapy Theory and Practice | volume = 28 | issue = 8 | pages = 624–632|doi=10.3109/09593985.2011.654321|issn=1532-5040|pmid=22324761}}</ref> The questionnaire has been used in various illnesses including fibromyalgia,<ref>{{Cite journal | last = Zijlstra | first = T.R. | last2 = Taal | first2 = E. | last3 = van de Laar | first3 = M. A. F.J. | last4 = Rasker | first4 = J.J. | date = 2006-06-06 | title = Validation of a Dutch translation of the fibromyalgia impact questionnaire | url =http://dx.doi.org/10.1093/rheumatology/kel171 | journal = Rheumatology | volume = 46 | issue = 1 | pages = 131–134|doi=10.1093/rheumatology/kel171|issn=1462-0332}}</ref> rheumatoid arthritis,<ref>{{Cite journal | last = van Hoogmoed | first = Dewy | last2 = Fransen | first2 = Jaap | last3 = Bleijenberg | first3 = Gijs | last4 = van Riel | first4 = Piet | date = Jul 2010 | title = Physical and psychosocial correlates of severe fatigue in rheumatoid arthritis |url =https://www.ncbi.nlm.nih.gov/pubmed/20353956 | journal = Rheumatology (Oxford, England) | volume = 49 | issue = 7 | pages = 1294–1302|doi=10.1093/rheumatology/keq043|issn=1462-0332|pmid=20353956}}</ref> multiple sclerosis,<ref>{{Cite journal | last = van der Werf | first = S.P. | last2 = Jongen | first2 = P.J. | last3 = Lycklama à Nijeholt | first3 = G.J. | last4 = Barkhof | first4 = F. | last5 = Hommes | first5 = O.R. | last6 = Bleijenberg | first6 = G. | author-link6 = Gijs Bleijenberg | date = 1998-10-08 | title = Fatigue in multiple sclerosis: interrelations between fatigue complaints, cerebral MRI abnormalities and neurological disability | url = https://www.ncbi.nlm.nih.gov/pubmed/9849800 | journal = Journal of the Neurological Sciences | volume = 160 | issue = 2 | pages = 164–170|issn=0022-510X|pmid=9849800}}</ref> cancer,<ref>{{Cite journal | last = Servaes | first = P. | last2 = van der Werf | first2 = S. | last3 = Prins | first3 = J. | author-link3 = Judith Prins | last4 = Verhagen | first4 = S. | last5 = Bleijenberg | first5 = G. | date = Jan 2001 | title = Fatigue in disease-free cancer patients compared with fatigue in patients with chronic fatigue syndrome | url =https://www.ncbi.nlm.nih.gov/pubmed/11147137 | journal = Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer | volume = 9 | issue = 1 | pages = 11–17|issn=0941-4355|pmid=11147137}}</ref> asthma,<ref>{{Cite journal | last = Van Herck | first = Maarten | last2 = Spruit | first2 = Martijn A. | last3 = Burtin | first3 = Chris | last4 = Djamin | first4 = Remco | last5 = Antons | first5 = Jeanine | last6 = Goërtz | first6 = Yvonne M.J. | last7 = Ebadi | first7 = Zjala | last8 = Janssen | first8 = Daisy J.A. |last9 = Vercoulen | first9 = Jan H. | author-link9 = Jan Vercoulen | date = 2018-11-23 | title = Fatigue is Highly Prevalent in Patients with Asthma and Contributes to the Burden of Disease | url =https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6306949/ | journal = Journal of Clinical Medicine | volume = 7 | issue = 12|doi=10.3390/jcm7120471|issn=2077-0383|pmc=|pmid=30477110 | pages = |quote= | authorlink = Maarten Van Herck|via=}}</ref> amyotrophic lateral sclerosis,<ref>{{Cite journal | last = Panitz | first = S. | last2 = Kornhuber | first2 = M. | last3 = Hanisch | first3 = F. | date = Jun 2015 | title = The checklist individual strength (CIS20-R) in patients with amyotrophic lateral sclerosis - a longitudinal study | url = https://www.ncbi.nlm.nih.gov/pubmed/25639482 | journal = Acta Neurologica Scandinavica | volume = 131 | issue = 6 | pages = 372–380|doi=10.1111/ane.12349|issn=1600-0404|pmid=25639482}}</ref> sarcoidosis,<ref>{{Cite journal | last = Korenromp | first = Ingrid H.E. | last2 = Heijnen | first2 = Cobi J. | last3 = Vogels | first3 = Oscar J.M. | last4 = van den Bosch | first4 = Jules M.M. | last5 = Grutters | first5 = Jan C. | date = Aug 2011 | title = Characterization of chronic fatigue in patients with sarcoidosis in clinical remission | url =https://www.ncbi.nlm.nih.gov/pubmed/21330380 | journal = Chest | volume = 140 | issue = 2 | pages = 441–447|doi=10.1378/chest.10-2629|issn=1931-3543|pmid=21330380}}</ref> and mitochondrial disorders.<ref>{{Cite journal | last = Smits | first = Bart | last2 = van den Heuvel | first2 = Lambert | last3 = Knoop | first3 = Hans | last4 = Küsters | first4 = Benno | last5 = Janssen | first5 = Antoon | last6 = Borm | first6 = George | last7 = Bleijenberg | first7 = Gijs | last8 = Rodenburg | first8 = Richard | last9 = van Engelen | first9 = Baziel | date = Sep 2011 | title = Mitochondrial enzymes discriminate between mitochondrial disorders and chronic fatigue syndrome | url =https://www.ncbi.nlm.nih.gov/pubmed/21664495 | journal = Mitochondrion | volume = 11 | issue = 5 | pages = 735–738|doi=10.1016/j.mito.2011.05.005|issn=1872-8278|pmid=21664495}}</ref>

=== Average scores ===
Indicative scores and standard deviations for the CIS and the subjective fatigue subscale are given below.<ref name=":2" /><ref name=":3" />
{| class="wikitable"
|
|CIS-20 total score
|CIS-8 subjective fatigue
|-
|Healthy persons
|41.5 (19.8)
|17.3 (10.1)
|-
|Chronic fatigue syndrome
|113.1 (14.6)
|51.7 (4.6)
|-
|Multiple Sclerosis
|85.1 (21.9)
|40.2 (11.8)
|-
|Functional bowel disorder
|71.1 (18.1)
|34.1 (8.5)
|}
In a study on work absence due to fatigue, a cut-off score of 76 on the CIS indicates a risk for subsequent sick leave or work disability.<ref>{{Cite journal | last = Bültmann | first = U. | last2 = de Vries | first2 = M. | last3 = Beurskens | first3 = A.J. | last4 = Bleijenberg | first4 = G. | last5 = Vercoulen | first5 = J.H. | last6 = Kant | first6 = I. | date = Oct 2000 | title = Measurement of prolonged fatigue in the working population: determination of a cutoff point for the checklist individual strength | url = https://www.ncbi.nlm.nih.gov/pubmed/11051524 | journal = Journal of Occupational Health Psychology | volume = 5 | issue = 4 | pages = 411–416|issn=1076-8998|pmid=11051524}}</ref> On the subjective fatigue subscale of CIS, a score of 35 is seen as indicative of severe fatigue.<ref>{{Cite web | url = https://www.oatext.com/an-analysis-of-dutch-hallmark-studies-confirms-the-outcome-of-the-pace-trial-cognitive-behaviour-therapy-with-a-graded-activity-protocol-is-not-effective-for-chronic-fatigue-syndrome-and-myalgic-encephalomyelitis.php | title = An analysis of Dutch hallmark studies confirms the outcome of the PACE trial: cognitive behaviour therapy with a graded activity protocol is not effective for chronic fatigue syndrome and Myalgic Encephalomyelitis. | website = oatext.com|language=en|access-date=2019-02-17}}</ref>

== Criticism ==

=== Ceiling effects ===
The subjective fatigue (also called fatigue severity) subscale of the CIS has been the most widely used in the field of ME/CFS.<ref>{{Cite journal | last = Prins | first = Judith B | last2 = Bleijenberg | first2 = Gijs | last3 = Bazelmans | first3 = Ellen | last4 = Elving | first4 = Lammy D | last5 = de Boo | first5 = Theo M | last6 = Severens | first6 = Johan L | last7 = van der Wilt | first7 = Gert Jan | last8 = Spinhoven | first8 = Philip | last9 = van der Meer | first9 = Jos WM | date = Mar 2001 | title = Cognitive behaviour therapy for chronic fatigue syndrome: a multicentre randomised controlled trial | url = http://dx.doi.org/10.1016/s0140-6736(00)04198-2 | journal = The Lancet | volume = 357 | issue = 9259 | pages = 841–847|doi=10.1016/s0140-6736(00)04198-2|issn=0140-6736}}</ref><ref>{{Cite journal | last = Wiborg | first = Jan F. | last2 = van Bussel | first2 = Jose | last3 = van Dijk | first3 = Agaat | last4 = Bleijenberg | first4 = Gijs | last5 = Knoop | first5 = Hans | date = 2015 | title=Randomised Controlled Trial of Cognitive Behaviour Therapy Delivered in Groups of Patients with Chronic Fatigue Syndrome | url =https://www.karger.com/Article/FullText/438867 | journal = Psychotherapy and Psychosomatics|language=en | volume = 84 | issue = 6 | pages = 368–376|doi=10.1159/000438867|issn=0033-3190}}</ref><ref>{{Cite journal | last = Knoop | first = Hans | last2 = van der Meer | first2 = Jos W.M. | last3 = Bleijenberg | first3 = Gijs | date = Oct 2008 | title = Guided self-instructions for people with chronic fatigue syndrome: randomised controlled trial | url = http://dx.doi.org/10.1192/bjp.bp.108.051292 | journal = British Journal of Psychiatry | volume = 193 | issue = 04 | pages = 340–341|doi=10.1192/bjp.bp.108.051292|issn=0007-1250}}</ref><ref>{{Cite journal | last = Janse | first = A. | last2 = Worm-Smeitink | first2 = M. | last3 = Bleijenberg | first3 = G. | last4 = Donders | first4 = R. | last5 = Knoop | first5 = H. | date = Feb 2018 | title = Efficacy of web-based cognitive–behavioural therapy for chronic fatigue syndrome: randomised controlled trial | url = https://www.cambridge.org/core/product/identifier/S0007125017000228/type/journal_article | journal = The British Journal of Psychiatry|language=en | volume = 212 | issue = 02 | pages = 112–118|doi=10.1192/bjp.2017.22|issn=0007-1250}}</ref> Because this subscale asks general questions about fatigue such as “I “feel tired” or “I feel weak”, ME/CFS often score close to the maximum score.<ref name=":5">{{Cite journal | last = Stouten | first = Bart | date = 2005-05-13 | title = Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution | url =https://www.ncbi.nlm.nih.gov/pubmed/15892882 | journal = BMC health services research | volume = 5 | pages = 37|doi=10.1186/1472-6963-5-37|issn=1472-6963|pmc=1175848|pmid=15892882}}</ref> The fatigue severity subscale asks 8 questions which gives a score from 8 to 56. While healthy persons score on average 17.3 and patients with other chronic conditions usually score below 40, ME/CFS patients easily reach a score above 50. For example, in a study of homebound ME/CFS patients (which included some of the authors of the CIS), it was noted that “The CIS-fatigue score involves an overall rating and in CFS samples easily reaches the extreme end of its scale.”<ref>Van der Werf S, Prins J, Klein-Rouweler E, Alberts M, van der Meer J, Bleijenberg G: Homebound chronic fatigue syndrome patients. Determinants and consequences of experienced fatigue in chronic fatigue syndrome and neurological conditions. PhD thesis 2000:31-41</ref>

As a result ME/CFS patients can no longer indicate a worsening of their fatigue, a phenomenon that is called the ceiling effect. This can influence the findings of randomized trials. For example: If ME/CFS patients record the maximum score on the CIS and half of them improves while the other half deteriorates with the same amount during follow-up, then only the improvement will become visible on the questionnaire.<ref>{{Cite web | url = https://www.s4me.info/threads/my-feedback-on-content-of-cdes-fatigue-myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-cde-public-review.2017/ | title = My feedback on content of CDEs (Fatigue) - Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) CDE Public Review | website = Science for ME|language=en-US|access-date=2019-02-17}}</ref> If such a result were used as a primary outcome in randomized trial, it might overestimate improvements in fatigue and underestimate deterioration or harms by the intervention.<ref>{{Cite web | url = http://senseaboutscienceusa.org/pace-research-sparked-patient-rebellion-challenged-medicine/ | title = PACE: The research that sparked a patient rebellion and challenged medicine | last = sasusa | date = 2016-03-21 | website = Sense About Science USA|language=en-US|access-date=2019-02-17}}</ref> Bart Stouten calculated the lower bounds for the number of items with the maximum score on the CIS fatigue severity subscale. In some studies this was as high as 46%.<ref name=":5" />

==See also==
*[[Questionnaires and tools to assess ME/CFS symptoms or severity]]

== References ==
{{reflist}}
[[Category:Symptom scales]]

Primer for doctors and researchers

2023-12-07T09:38:43Z

Anonymous990:/* Drugs */ remove ref tag in-text

{{mbox|text= Editors: Edits to this Primer may require the same edits to the other [[:Category:Primers|Primers]].}}
[[Chronic Fatigue Syndrome|Chronic fatigue syndrome]] (CFS) is also known as [[myalgic encephalomyelitis]] (ME) or [[ME/CFS]]. There are many [[Definitions of myalgic encephalomyelitis and chronic fatigue syndrome| clinical and research definitions]], which creates confusion for doctors, researchers, and patients.

It is worth noting that [[chronic fatigue]] (without the "syndrome") is a not a disease in and of itself, but a symptom of many diseases and drug therapies. This term is not interchangeable with [[Chronic fatigue syndrome|CFS]], [[Myalgic encephalomyelitis|ME]], or [[ME/CFS]].
<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: [[chronic fatigue]] (CF); [[post-exertional malaise]] (PEM); [[unrefreshing sleep]]/[[Sleep dysfunction|sleep problems]]; and [[Cognitive dysfunction|cognitive impairment]]/[[brain fog]] and/or [[orthostatic intolerance]] (OI).<ref name="CDC-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><ref name="IOM2015-clinicians">{{Cite web|url=https://www.nap.edu/resource/19012/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 person with ME is likely to have other symptoms as well.<ref name="whatis" /> [[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 = nationalacademies.org|archive-url=|archive-date=|access-date=}}</ref><ref name="IOM2015-clinicians" />. The [[Canadian Consensus Criteria]] (CCC) requires the core symptoms along with additional [[Nervous system|neurological]], [[Autonomic nervous system|autonomic]], [[Neuroendocrine system|neuroendocrine]], and [[immune system|immune]] symptoms.<ref name="Carruthers, 2003">{{Cite journal | last1 = Carruthers | first1 = Bruce M. | authorlink1 = Bruce Carruthers | last2 = Jain | first2 = Anil Kumar | authorlink2 = Anil Kumar Jain | last3 = De Meirleir | first3 = Kenny L. | authorlink3 = Kenny De Meirleir | last4 = Peterson | first4 = Daniel L. | authorlink4 = Daniel Peterson | last5 = Klimas | first5 = Nancy G. | authorlink5 = Nancy Klimas | last6 = Lerner | first6 = A. Martin | authorlink6 = Martin Lerner | last7 = Bested | first7 = Alison C. | authorlink7 = Alison Bested | last8 = Flor-Henry | first8 = Pierre | authorlink8 = Pierre Flor-Henry | last9 = Joshi | first9 = Pradip | authorlink9 = Pradip Joshi | last10 = Powles | first10 = AC Peter | authorlink10 = A C Peter Powles | last11 = Sherkey | first11 = Jeffrey A. | authorlink11 = Jeffrey Sherkey | last12 = van de Sande | first12 = Marjorie I. | authorlink12 = Marjorie van de Sande | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols | journal = Journal of Chronic Fatigue Syndrome | volume = 11 | issue = 2 | pages = 7-115 | date = 2003 | pmid = | doi = 10.1300/J092v11n01_02
| url = http://phoenixrising.me/wp-content/uploads/Canadian-definition.pdf }}</ref> The [[International Consensus Criteria]] (ICC) is used to diagnose [[myalgic encephalomyelitis]] (ME) which requires the core symptoms and neurological, immune/[[Gastrointestinal system|gastrointestinal]]/genitourinary impairment, and [[Portal:Energy metabolism|energy metabolism]]/[[Ion transportation|ion transport]] impairment [[International Consensus Criteria#Criteria|symptoms for a diagnosis]].<ref name="ICC2011criteria">{{Cite journal | last = Carruthers | first = Bruce M. | author-link = Bruce Carruthers | last2 = van de Sande | first2 = Marjorie I. | authorlink2 = Marjorie van de Sande | last3 = De Meirleir | first3 = Kenny L. | authorlink3 = Kenny De Meirleir | last4 = Klimas | first4 = Nancy G. | author-link4 = Nancy Klimas | last5 = Broderick | first5 = Gordon | author-link5 = Gordon Broderick | last6 = Mitchell | first6 = Terry | authorlink6 = Terry Mitchell | last7 = Staines | first7 = Donald | author-link7 = Donald Staines | last8 = Powles | first8 = A.C. Peter | author-link8 = A C Peter Powles | last9 = Speight | first9 = Nigel | authorlink9 = Nigel Speight | last10 = Vallings | first10 = Rosamund | authorlink10 = Rosamund Vallings | last11 = Bateman | first11 = Lucinda | authorlink11 = Lucinda Bateman | last12 = Baumgarten-Austrheim | first12 = Barbara | authorlink12 = Barbara Baumgarten-Austrheim | last13 = Bell | first13 = David | author-link13 = David Bell | last14 = Carlo-Stella | first14 = Nicoletta | author-link14 = Nicoletta Carlo-Stella | last15 = Chia | first15 = John | author-link15 = John Chia | last16 = Darragh | first16 = Austin | author-link16 = Austin Darragh | last17 = Jo | first17 = Daehyun | author-link17 = Daehyun Jo | last18 = Lewis | first18 = Donald | author-link18 = Donald Lewis | last19 = Light | first19 = Alan | author-link19 = Alan Light | last20 = Marshall-Gradisnik | first20 = Sonya | author-link20 = Sonya Marshall-Gradisnik | last21 = Mena | first21 = Ismael | author-link21 = Ismael Mena | last22 = Mikovits | first22 = Judy | author-link22 = Judy Mikovits | last23 = Miwa | first23 = Kunihisa | author-link23 = Kunihisa Miwa | last24 = Murovska | first24 = Modra | author-link24 = Modra Murovska | last25 = Pall | first25 = Martin | author-link25 = Martin Pall | last26 = Stevens | first26 = Staci | author-link26 = Staci Stevens | date = 2011-08-22 | title=Myalgic encephalomyelitis: International Consensus Criteria|url=https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2796.2011.02428.x|journal=Journal of Internal Medicine|language=en|volume=270|issue=4|pages=327–338|doi=10.1111/j.1365-2796.2011.02428.x|issn=0954-6820|pmc=3427890|pmid=21777306|via=}}</ref>

Although the [[Fukuda criteria|Fukuda]]<ref name="fukuda1994">{{Cite journal | last = Fukuda | first = K. | author-link = Keiji Fukuda | last2 = Straus | first2 = S.E. | authorlink2 = Stephen Straus | last3 = Hickie | first3 = I. | authorlink3 = Ian Hickie | last4 = Sharpe | first4 = M.C. | authorlink4 = Michael Sharpe | last5 = Dobbins | first5 = J.G. | authorlink5 = James Dobbins | last6 = Komaroff | first6 = A. | authorlink6 = Anthony Komaroff | date = 1994-12-15 | title = The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group | url = https://www.researchgate.net/profile/Michael_Sharpe2/publication/247808895_The_Chronic_Fatigue_Syndrome_A_Comprehensive_Approach_to_Its_Definition_and_Study/links/0c96053201643bfc4b000000/The-Chronic-Fatigue-Syndrome-A-Comprehensive-Approach-to-Its-Definition-and-Study.pdf|journal=Annals of Internal Medicine|volume=121|issue=12 | pages = 953–959|issn=0003-4819|pmid=7978722|via=|doi=10.7326/0003-4819-121-12-199412150-00009|publisher=American College of Physicians}}</ref> and the [[Oxford criteria|Oxford Criteria]]<ref name=":02">{{Cite journal | last = Sharpe | first = M C | last2 = Archard | first2 = L C | last3 = Banatvala | first3 = J E | last4 = Borysiewicz | first4 = L K | last5 = Clare | first5 = A W | last6 = David | first6 = A | last7 = Edwards | first7 = RH | last8 = Hawton | first8 = KE | last9 = Lambert | first9 = HP | date = Feb 1991 | 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|volume=84|issue=2|pages=118–121|issn=0141-0768|pmc=1293107|pmid=1999813}}</ref> have been used for diagnosing CFS, they are broader criteria, making [[misdiagnosis of myalgic encephalomyelitis and chronic fatigue syndrome|misdiagnosis]] a concern.<ref>[http://arthritis.about.com/od/fatigue/f/chronicfatigue.htm Chronic Fatigue Versus Chronic Fatigue Syndrome - About.com Health - By: Carol Eustice]</ref><ref>{{Cite web|url=https://www.meadvocacy.org/what_does_a_true_me_definition_look_like | title = What Does a True ME Definition Look Like? | last = | first = |website=MEadvocacy.org|access-date=2019-01-25}}</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/ | title = AHRQ Evidence Review Changes Its Conclusions | last = Spotila | first=Jennie | authorlink=Jennie Spotila | last2 = Dimmock | first2 = Mary | authorlink2 = Mary Dimmock | date = 2016-08-16 | website = occupyme.net|archive-url=|archive-date=|access-date=2019-01-25}}</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=":7">{{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=":8">{{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=":9">{{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=":10">{{Cite news | url=https://www.thetimes.co.uk/article/nathan-douglas-london-2012-was-the-darkest-period-of-my-life-vxt5gftcx | title = Nathan Douglas: London 2012 was the darkest period of my life | last = Broadbent | first = Rick | date = 2019-02-27|work=The Times|access-date=2019-02-28|archive-url=|archive-date=|language=en|issn=0140-0460|quote=}}</ref> these athletes may have had [[overtraining syndrome]] (which has the symptom of CF) and not ME or CFS.<ref name="spence">{{Cite web | last = Spence | first = Vance | authorlink = Vance Spence|website=Irish M.E. Association| title = Snippets {{!}} A presentation by MERGE Chairman Dr Vance Spence on 12 November 2005 at the Oak Tree Court Conference Centre, Coventry, at the invitation of the Warwickshire Network for ME|url = https://www.imet.ie/imet_website/snippets/7th_december_2005_snippets.html}}</ref> Some people with [[anemia]], [[allergy|allergies]], [[idiopathic chronic fatigue]] or [[:Category:Potential comorbidities|other fatiguing illnesses]] are erroneously diagnosed with CFS.<ref name="Carruthers, 2003" />

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

"The most common overlapping condition with ME/CFS is [[fibromyalgia]]."<ref name=":30">{{Cite web|url=https://ammes.org/overlapping-conditions/ | title = Overlapping Conditions - American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society | last = | first = | date = |website=[[American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society]]|language=en-US|archive-url=|archive-date=|access-date=2018-08-12}}</ref><ref name=":31">{{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>{{Cite journal | last = Natelson | first = Benjamin H. | date = 2019-02-19 | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia: Definitions, Similarities, and Differences|url=https://www.clinicaltherapeutics.com/article/S0149-2918(19)30003-7/abstract|journal=Clinical Therapeutics|language=English|volume=41|issue=4 | pages = 612|doi=10.1016/j.clinthera.2018.12.016|issn=0149-2918|pmid=30795933}}</ref>

Unfortunately, a psychiatric approach has been taken with ME/CFS, but this is changing. At this time there are no approved drug treatments. [[Graded exercise therapy]] (GET) and [[cognitive behavioral therapy]] (CBT) are used in the [[United Kingdom|UK]] inappropriately for treating ME/CFS. As of 2021 the GET has been scrapped in the UK [https://www.theguardian.com/society/2021/oct/29/health-watchdog-nice-publishes-delayed-me-guidance].

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" /> The CDC recognizes the hallmark symptom of PEM which is a worsening of symptoms after physical or mental activity<ref name="CDC-symptoms" /> and says [[ME/CFS]] is a "disabling and complex disease."<ref name="what-is">{{Cite web|url=https://www.cdc.gov/me-cfs/about/index.html | title = What is ME/CFS? {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | date = 2019-01-18 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-04-12}}</ref>

[[File:SEID algorithm.JPG|thumb|right|Diagnostic Algorithm for [[Systemic Exertion Intolerance Disease|SEID]]'s minimum [[List of symptoms in ME CFS#Systemic Exertion Intolerance Disease (SEID) symptom list|ME/CFS core symptoms]]]]

== Disease onset and course of illness==
[[Onset of ME/CFS|ME/CFS can begin]] from many acute/sudden<ref name="Chu2019">{{Cite journal | last = Chu | first = Lily | authorlink = Lily Chu | last2 = Valencia | first2 = Ian J. | authorlink2 = Ian Valencia | last3 = Garvert | first3 = Donn W. | authorlink3 = | last4 = Montoya | first4 = Jose G. | authorlink4 = Jose Montoya | 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, [[allergies|allergic reaction]], and [[stress]].<ref>{{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="CDC-pres">{{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>[https://www.masscfids.org/images/pdf/Primer_2014.pdf Chronic Fatigue Syndrome Myalgic Encephalomyelitis - Primer for Clinical Practitioners - 2014 Edition - Massachusettes CFIDS/FM Assoc]</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 | last2 = Jason | first2 = Leonard | author-link2 = 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=}}</ref>

The disease [[ME/CFS]] is often diagnosed when a person does not recover from a [[flu-like illness]], [[mononucleosis]] or another [[HHV|herpesvirus]], [[Q fever]], an unidentified [[virus]], or [[:Category:Infectious agents|other infection]], and meets one or more [[Definitions of myalgic encephalomyelitis and chronic fatigue syndrome|diagnostic criteria for either ME, CFS, or ME/CFS]].<ref>[https://www.nap.edu/read/19012/chapter/7#157 IOM Report - INFECTION]</ref><ref>[http://www.cortjohnson.org/blog/2014/01/09/lipkin-study-vagus-nerve-hhv-6-loomis-hhv-6-foundation/ The Lipkin Study, The Vagus Nerve Infection Hypothesis and HHV-6: Kristin Loomis of the HHV-6 Foundation Talks – Pt. I - Health Rising - By: Cort Johnson - June 2014]</ref> Patients experience [[List of symptoms in ME CFS|numerous symptoms]] and disease severity which fluctuate from day to day, week to week, month to month, year to year, and even decade to decade. Furthermore, symptoms and disease severity vary among patients.<ref>[http://www.meassociation.org.uk/about/the-symptoms-and-diagnosis-of-mecfs/ Symptoms and diagnosis of ME/CFS - ME Association]</ref><ref>[http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms Chronic Fatigue Syndrome - Symptoms - Web MD]</ref><ref>[http://phoenixrising.me/mecfs-basics/chronic-fatigue-syndrome-mecfs-facts-chronic-fatigue-syndrome-is-2 Facts (ME/CFS) Severity]</ref>

The CDC recognizes that there can be different causes and it is possible that two or more things could cause the illness. Areas of research include infections, [[immune system]] changes, [[stress]] affecting body chemistry, changes in [[Metabolic|energy production]], and a possible [[Genetics of chronic fatigue syndrome|genetic link]].<ref name="CDC-causes">{{Cite web | title = Possible Causes {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)|url=https://www.cdc.gov/me-cfs/about/possible-causes.html|website=[[Centers for Disease Control and Prevention]] | date = 2019-01-18|access-date=2019-01-27|language=en-us}}</ref><ref name="etiology" /> The CDC notes there are abnormalities with the immune system, [[Metabolic|cellular metabolism]], neuroendocrine disturbances, and [[blood pressure]] or heart rate regulation.<ref name="etiology" />
=== Not a mental health disorder ===
In the past, CFS was believed to be a mental health disorder. This is why the CDC now states: "ME/CFS is a biological illness, not a psychologic disorder. Patients with ME/CFS are neither malingering nor seeking secondary gain. These patients have multiple pathophysiological changes that affect multiple systems."<ref name="etiology" />

===No clear evidence that ME/CFS is contagious===
[[:Category:Infectious agents|Infectious episodes]] have led to [[List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks|outbreaks]] over the years and 72% of ME/CFS patients report an [[Onset of ME/CFS|onset]] of a viral or bacterial infection.<ref>{{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 | page = 6|archive-url=|archive-date=|access-date=}}</ref> Nowadays, the vast majority of ME/CFS cases are sporadic rather than epidemic, and although some outbreaks have been caused by known viruses - such as the [[2003 Hong Kong outbreak|SARS pandemic]] and [[2019 Coronavirus pandemic outbreak|COVID-19]] - there is no clear evidence that sporadic ME/CFS cases are contagious.<ref name="pediatricprimer">{{Cite journal | last = Rowe | first = Katherine S. | last2 = Vallings | first2 = Rosamund | last3 = Stewart | first3 = Julian M. | last4 = Speight | first4 = Nigel | last5 = Schwartz | first5 = Malcolm S. | last6 = Medow | first6 = Marvin S. | last7 = Gurwitt | first7 = Alan | last8 = Friedman | first8 = Kenneth J. | last9 = Underhill | first9 = Rosemary A. | date = 2017 | title=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer |url = https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full|journal=Frontiers in Pediatrics|language=English|volume=5|doi=10.3389/fped.2017.00121|issn=2296-2360}}</ref>

Families, partners, and friends do not report contracting ME/CFS from someone with the disease nor do patients report passing it on to others.<ref>{{Cite web|url=http://forums.prohealth.com/forums/index.php?threads/is-cfs-contagious.189664/ | title = Is CFS contagious? {{!}} ProHealth Fibromyalgia, ME/CFS and Lyme Disease Forums|website=forums.prohealth.com|access-date=2019-02-13}}</ref> However, Underhill and O'Gorman (2006) researched 219 patients with ME/CFS, and concluded that close household contact and genetics were both risk factors for CFS, finding 3.2% of spouses/partners of those with CFS also had the illness.<ref name="UnderhillInfectious">{{Cite journal | last = Underhill | first = Rosemary A. | last2 = O'Gorman | first2 = Ruth | date = 2006-01-01 | title = Prevalence of Chronic Fatigue Syndrome and Chronic Fatigue Within Families of CFS Patients|url=https://doi.org/10.1300/J092v13n01_02|journal=Journal of Chronic Fatigue Syndrome|volume=13|issue=1|pages=3–13|doi=10.1300/J092v13n01_02|issn=1057-3321}}</ref> This was a higher prevalence than all genetic relatives except children of patients. Because ME/CFS can run in families, a [[Genetics of chronic fatigue syndrome|genetic link]] is a line of research recommended by the CDC.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/about/possible-causes.html | title = Possible Causes {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2019-01-18 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-02-13}}</ref><br />

[[Michael Sikora]] and collaborators at the [[Open Medicine Foundation]] hope that their research on the role of [[T cell]]s and immune-related [[Genetics of chronic fatigue syndrome|genes]] will help address "whether ME/CFS is an autoimmune or infectious disease, or simply an activation of the immune system".<ref name="omf-funded">{{Cite web|url=https://www.omf.ngo/2018/06/04/omf-funded-research/ | title = OMF funded research | date = Jun 4, 2018 | website = [[Open Medicine Foundation]]}}</ref>
====Blood donation and organ transplant====
Patients with ME/CFS are banned from [[Blood donation|donating blood]] or tissues in the [[United Kingdom|UK]] by the UK's [[National Health Service]], including patients who have recovered.<ref name="Blood">{{Cite web|url=https://my.blood.co.uk/knowledgebase/Index/C | title = My Donor Record - Health, Eligibility & Travel|website=my.blood.co.uk|access-date=2021-04-01}}</ref><ref>{{Cite web|url=https://transfusionguidelines.org.uk/ | title = Joint United Kingdom (UK) Blood Transfusion and Tissue Transplantation Services Professional Advisory Committee - Transfusion Guidelines | last = Target Information Systems Ltd|website=transfusionguidelines.org.uk|language=en|access-date=2021-04-01}}</ref>
In the [[United States]] a temporary ban on donations from ME/CFS patients was put in place due to the research of [[Xenotropic murine leukemia virus-related virus|XMRV]] as being the infectious trigger of CFS<ref name="PostRedCross2010" /><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="PostRedCross2010">{{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> Two papers on XMRV were retracted as it was a laboratory contamination.<ref name="Redaction2012">{{Cite journal | date = Dec 2012 | title = Redaction, retraction and reaction|url=https://www.nature.com/articles/nrmicro2928|journal=Nature Reviews Microbiology|language=en|volume=10|issue=12 | pages = 799|doi=10.1038/nrmicro2928|issn=1740-1534}}</ref><ref name="TN2012">{{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> Currently the US American Red Cross no longer have statements barring transfusions or transplants from ME/CFS patients, but patients are expected to be in "good health" which would exclude most.<ref name="RedCross">{{Cite web|url=https://www.redcrossblood.org/faq.html#eligibility-health|access-date=2019-02-13 | title = Frequently Asked Questions | date = | last = | first = | authorlink = |archive-url=|archive-date=|website=American Red Cross|quote=Your search for "Chronic fatigue syndrome" returned no results.}}</ref> Patient charities discouraged ME/CFS patients from donating blood,<ref name="MassBlood2015">{{Cite web |url=https://www.massmecfs.org/research/recent-research/19-xmrv/237-aabbs-recommendation-on-cfidsme-and-blood-donation | title = AABB's recommendation on ME/CFS and blood donation | date = Nov 25, 2015 |website=[[Massachusetts ME/CFS & FM Association]]}}</ref> but the American Association of Blood Banks advises to either accept or defer donors based on "clinical judgment of the donor's health status".<ref name="AABBOct2012">{{Cite web | last = American Association of Blood Banks | url=https://www.aabb.org/docs/default-source/default-document-library/regulatory/eid/xmrvfactsheet.pdf?sfvrsn=cd162fa3_2 | date = October 2012 | title = Xenotropic Murine Leukemia Virus-Related Virus (XMRV) and other Polytropic Murine Leukemia Viruses (pMLV) |pages = 3 |quote=An updated AABB Association Bulletin #12-05 (November 2012) states that individual collectors of blood and cellular therapy products should accept or defer donors with a history of CFS based on their clinical judgment of the donor's health status.}}</ref>

[[New Zealand]] bans blood donation from anyone with ME/CFS.<ref name="NZBlood">{{Cite web |url = https://www.nzblood.co.nz/become-a-donor/am-i-eligible/detailed-eligibility-criteria/ | title = Detailed Eligibility Criteria|access-date=2022-05-25 | date = |website=NZ Blood|quote=People with a diagnosis of Chronic Fatigue Syndrome are permanently ineligible from donating blood in New Zealand}}</ref> [[Australia]] has a prohibition on blood donation as a precaution because it has not been established if ME/CFS could be caused by a transmissible infection.<ref name="AusBloodDonation">https://www.lifeblood.com.au/faq/eligibility/medical-conditions-and-procedures/chronic-fatigue-syndrome</ref>

== Mini-Docs ==
<embedvideo service="youtube" dimensions="400" alignment="right" container="frame" description="By Jen Brea/TED (2016)">https://www.youtube.com/watch?v=Fb3yp4uJhq0</embedvideo>
[[What happens when you have a disease doctors can't diagnose - TED Talk (2016)|''What happens when you have a disease doctors can't diagnose'']] By [[Jennifer Brea|Jen Brea]]/TED

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

<embedvideo service="youtube" dimensions="400" alignment="right" container="frame" description="By Veronica Weber/Palo Alto Online (2015)">https://www.youtube.com/watch?v=9_HwOUiImvw</embedvideo>

[[Invisible Illness - Stories of Chronic Fatigue Syndrome|''Invisible Illness - Stories of Chronic Fatigue Syndrome'']] By Veronica Weber/Palo Alto Online

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

<embedvideo service="youtube" dimensions="400" alignment="right" container="frame" description="By Dr. David Kaufman/Unrest (2018)">https://www.youtube.com/watch?v=RC9TjgE_PlU</embedvideo>

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

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

==Epidemiology ==
In the [[United States]], 836,000 - 2.5 million people suffer from ME/CFS. "The total economic costs of ME/CFS are estimated at $17 to $24 billion annually."<ref name="IOM2015-clinicians" /> Some CFS patients can work with [https://www.dol.gov/general/topic/disability/jobaccommodations job accommodations] but 1/3 to 1/2 become unemployed and [[Disability|many rely on SSDI/SSI]].<ref>[http://phoenixrising.me/living-i-the-basics/disability-chronic-fatigue-syndrome-mecfs Disability for CFS - Phoenix Rising]</ref><ref>[http://www.womenshealth.gov/publications/our-publications/fact-sheet/chronic-fatigue-syndrome.html CFS - Womenshealth.gov]</ref><ref>[https://www.masscfids.org/job-accommodations Job Accommodations - MASS CFIDS]</ref>
*[[Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome|Epidemiology]]
:All races and cultures are afflicted with ME/CFS.<ref>[http://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-9-91 Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care - Bio-Med Central - July 2011]</ref><ref name="epidemiology">{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/epidemiology.html | title = Epidemiology {{!}} Presentation and Clinical Course {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2018-11-08 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-01-29}}</ref> Children and adolescents are also diagnosed.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/me-cfs-children/index.html | title = ME/CFS in Children {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2019-01-18 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-01-29}}</ref><ref>{{Cite web|url=https://www.massmecfs.org/pediatric-me-cfs-home-page | title = Pediatric ME/CFS Home Page|website=massmecfs.org|access-date=2019-01-29}}</ref>
*[[Female predominant diseases]]
:Like many [[Autoimmune disease|autoimmune]] and [[Neuro-immune disease|neuro-immune]] diseases where mostly women are afflicted,<ref>[http://www.rightdiagnosis.com/artic/fact_sheet_autoimmune_disease_in_women_nwhic.htm Fact Sheet Autoimmune Disease in Women: NWHIC - Right Diagnosis - Aug 2015]</ref> the ME/CFS female/male patient ratio per Capelli et al. is 6:1<ref>{{Cite journal | last = Capelli | first = E. | last2 = Zola | first2 = R. | last3 = Lorusso | first3 = L. | last4 = Venturini | first4 = L. | last5 = Sardi | first5 = F. | last6 = Ricevuti | first6 = G. | date = Oct 2010 | title = Chronic fatigue syndrome/myalgic encephalomyelitis: an update|url=https://www.ncbi.nlm.nih.gov/pubmed/21244747|journal=International Journal of Immunopathology and Pharmacology|volume=23|issue=4 | pages = 981–989|doi=10.1177/039463201002300402|issn=0394-6320|pmid=21244747}}</ref> while the CDC states 4:1.<ref name="epidemiology" />
*[[Pediatric myalgic encephalomyelitis and chronic fatigue syndrome|Pediatric]]
:Pediatric ME/CFS is defined by the CDC<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/me-cfs-children/factsheet-healthcare-professional.html | title = Pediatric ME/CFS: Fact Sheet for Healthcare Professionals {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2017-10-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-10-13}}</ref> and the [[National Academy of Medicine]] (NAM)<ref name="pediatric">{{Cite journal | last = | first = | date = 2015-03-16 | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome {{!}} Pediatric ME/CFS |url=https://www.nap.edu/read/19012/chapter/8|journal=The National Academies Press|language=en|volume= | page = 181|pages = |doi=10.17226/19012|issue=|via=|quote=}}</ref> although it is usually diagnosed in adults. <ref name="what-is" /> "Children below the age of 8 or 9 do not have the symptom pattern of adolescents past puberty. If the onset of the disease occurs during adolescence, the most common time of onset, the pattern is similar to that of adults."<ref>{{Cite news | url=https://www.omf.ngo/2016/06/25/mecfs-in-children-by-dr-david-s-bell-2/ | title = ME/CFS in Children | first = David S. | last = Bell | authorlink = David Bell | date = 2016-06-25 | website = [[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=":22">{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/prognosis.html | title = Prognosis {{!}} Presentation and Clinical Course {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2018-07-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-10-28}}</ref><ref name="pediatricprimer" /> Children are diagnosed with ME/CFS at three months of illness under SEID and CCC and ME is diagnosed immediately under ICC.<ref>{{Cite web|url=https://www.masscfids.org/pediatric-me-cfs-links | title = Pediatric ME/CFS links|website=[[Massachusetts ME/CFS & FM Association]]|language=en-GB|access-date=2018-08-11}}</ref><ref name="IOM2015-clinicians" /><ref name="Carruthers, 2003" /><ref name="ICC2011criteria" />
*[[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?|website=[[American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome 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="KeyFacts">{{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>{{Cite book |url=https://www.nap.edu/read/19012/chapter/4 | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness | last = | first = |publisher=National Academies of Medicine|chapter =Chapter 4| year = 2015 |isbn=|editor-link=|location=|pages=32|language=en|quote=}}</ref> 90% of patients are undiagnosed.<ref name="what-is" />
*[[Prognosis for myalgic encephalomyelitis and chronic fatigue syndrome|Prognosis]]
:The prognosis for a patient diagnosed with ME/CFS is considered to be poor with only a minority (a median estimate of 5%) returning to pre-morbid levels of functioning.<ref name="Cairns2005">{{Cite journal | last = Cairns | first = R. | last2 = Hotopf | first2 = M. | date = Jan 2005 | title = A systematic review describing the prognosis of chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/15699087|journal=Occupational Medicine (Oxford, England)|volume=55|issue=1|pages=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>

==Evidence of a disease==

=== Symptoms ===
[[List of symptoms in ME CFS|Symptom presentation varies enormously]] between individuals. Symptom presentation also varies within individuals, as individuals often report that symptoms change over time (increasing or decreasing) and new symptoms may appear while others disappear.<ref>{{Cite web | title = Symptoms and Diagnosis of ME/CFS {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) {{!}} CDC|url=https://www.cdc.gov/me-cfs/symptoms-diagnosis/index.html|website=[[Centers for Disease Control and Prevention]] | date = 2019-01-18|access-date=2019-02-01|language=en-us}}</ref> There are many symptoms which people with ME/CFS experience, though those listed below are the core symptoms found in all patients.

[[File:Cfs woman sketch.jpg|435x435px|thumb|[[Post-exertional malaise]] (PEM) is a [[List of symptoms in ME CFS|''worsening'' of ME/CFS symptoms]] after minimal [[Exertion#Exertion in ME.2FCFS|'''physical''' or '''mental''' exertion]]. Worsening symptoms may include [[chronic fatigue]]; [[flu-like symptoms]]; [[brain fog|brain fog,]] [[cognitive dysfunction]], and [[word-finding problems]]; [[unrefreshing sleep]]; [[headache]]s and [[migraine]]s; [[chronic pain]]; [[Myalgia|muscle pain]] and [[muscle fatigability]]; [[orthostatic intolerance]], [[neurally mediated hypotension|neurally mediated hypotension,]] or [[Postural orthostatic tachycardia syndrome|POTS]]; and more. The onset of PEM can be [[Delayed onset of post-exertional symptoms|delayed 24-72 hours]] and depending on ME/CFS severity can last days, weeks, or even months]].<ref name="CDC-symptoms" />

[[File:Rosa SEID.JPG|400px|thumb|left|Rosa age 25 in 1986 and mildly ill with [[Systemic Exertion Intolerance Disease#Diagnostic criteria|ME/CFS's core symptoms]]. In 2015 the [[SEID]] criteria were released. Rosa read about [[Post-exertional malaise|PEM]] and how it is delayed and makes [[List of symptoms in ME CFS|ME/CFS symptoms]] like [[Chronic fatigue|CF]], [[Orthostatic intolerance|OI]], and [[Cognitive dysfunction|cognition]] worse. Her life since [[Pediatric myalgic encephalomyelitis/chronic fatigue syndrome|age 17]] fell into place as she never connected her worsening symptoms with increased [[Exertion#Exertion in ME.2FCFS|physical or mental activity]] 24-72 hours prior. She believes not understanding PEM made her illness worsen over the years and is now disabled meeting the [[Canadian Consensus Criteria|CCC]] with PEM"[[Canadian Consensus Criteria#Definition|option]]"]]

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

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

[[File:PEM4.JPG|300px|thumb|right|First photo, me in my [[Severe and very severe ME|wheelchair on a rare trip out]]. Second photo, the inevitable crash. Eye half closed, [[Speech difficulties|slurred speech]], [[Dizziness|dizzy]], weak, etc. #TwoFacesofME<ref>{{Cite web|url=https://twitter.com/hopeforMEyet/status/1085909800766980096 | title = First photo, me in my wheelchair on a rare trip out. Second photo, the inevitable crash. Eye half closed, slurred speech, dizzy, weak, etc. #TwoFacesofMEpic.twitter.com/P2OPnnpQvF | last = Karen | date = 2019-01-17 | website = @hopeforMEyet|language=en|access-date=2019-01-17}}</ref>]]

[[File:PEM5.JPG|300px|thumb|right|#TwoFacesofME First photo from the morning, the other one from the afternoon ( when I failed to nap 30-60 minutes). I am Not [[Severe and very severe ME|severely ill]], and my life is ok, even [so] I wish that one day science will help me & all the #MeCfs sufferers around the globe.<ref>{{Cite web | title = #TwoFacesofME First photo from the morning, the other one from the afternoon ( when I failed to nap 30-60 minutes). I am Not severely ill, and my life is ok, even do I wish that one day science will help me & all the #MeCfs sufferers around the globe.pic.twitter.com/wmhfHcfP0p | url = https://twitter.com/Authorportrait/status/1085815918846832640 | website = @Authorportrait | date = 2019-01-17|access-date=2019-01-17|language=en | first = Henry | last = Köhler}}</ref>]]

*[[Post-exertional malaise]] (PEM) is the hallmark symptom of ME/CFS. After '''physical or mental''' [[exertion]] (which for some patients can be a shower or making out a to-do list, others grocery shopping, socializing or reading a news article, while some just walking to the mailbox, getting to the doctor or mentally following a T.V. program)<ref name="whatis" /><ref name=":0">{{Cite news | url=https://phoenixrising.me/archives/11883 | title = Unraveling Post-exertional Malaise By Jennifer M. Spotila, J.D. | last=Spotlia | first=Jenny | date = 2010-08-06|work=Phoenix Rising|access-date=2018-10-16|archive-url=|archive-date=|publisher=Phoenix Rising|language=en-US}}</ref><ref name=":1">[http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms Chronic Fatigue Syndrome - Symptoms - Web MD]</ref> there is a payback of ''worsening'' [[List of symptoms in ME CFS|ME/CFS symptoms]] which can be delayed 24-72 hours or more<ref>{{Cite web|url=http://www.whathealth.com/awareness/event/internationalcfsmeawarenessday.html | title = International CFS/ME Awareness Day - 12th May 2019 | last = Hartley | first = Simon|website=whathealth.com|language=en|access-date=2018-10-16}}</ref><ref>{{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=":15">{{Cite journal | last = Yoshiuchi | first = Kazuhiro | last2 = Cook | first2 = Dane B. | last3 = Ohashi | first3 = Kyoko | last4 = Kumano | first4 = Hiroaki | last5 = Kuboki | first5 = Tomifusa | last6 = Yamamoto | first6 = Yoshiharu | last7 = Natelson | first7 = Benjamin H. | date = 2007-12-05 | title = A real-time assessment of the effect of exercise in chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/17655887|journal=Physiology & Behavior|volume=92|issue=5 | pages = 963–968|doi=10.1016/j.physbeh.2007.07.001|issn=0031-9384|pmc=2170105|pmid=17655887}}</ref> and can last 24 hours and even days, weeks, or months.<ref name="VanNess2010">{{Cite journal | last = VanNess | first = J. Mark | last2 = Stevens | first2 = Staci R. | last3 = Bateman | first3 = Lucinda | last4 = Stiles | first4 = Travis L. | last5 = Snell | first5 = Christopher R. | date = Feb 2010 | title = Postexertional malaise in women with chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/20095909|journal=Journal of Women's Health (2002)|volume=19|issue=2|pages=239–244|doi=10.1089/jwh.2009.1507|issn=1931-843X|pmid=20095909}}</ref><ref>[https://www.fda.gov/downloads/forindustry/userfees/prescriptiondruguserfee/ucm368806.pdf The Voice of the Patient.] A series of reports from the U.S. Food and Drug Administration's (FDA) 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=":0" /><ref name=":1" /> Regarding PEM the [[CFIDS Association of America]] states:
<blockquote>This is a term which describes a symptom in which exercise or exertion can bring on [[malaise]] (illness). In the case of people with ME/CFS, malaise often occurs during a period some 24-72 hours after exertion. For example, in some cases, a short walk can worsen ME/CFS symptoms two days later. This lack of understanding about the delayed onset of symptoms has, in the past, made it harder to test for ME/CFS. Follow up tests, taken less than 24 hours after an initial exercise test, may show that the patient can still perform activities at the same level (before post exertional malaise has a chance to take hold).<ref>[http://www.whathealth.com/awareness/event/internationalcfsmeawarenessday.html What Health - International CFS/ME Awareness Day 2017 - CFIDS Association of America]</ref></blockquote>
*[[chronic fatigue]]
*[[cognitive dysfunction]]
*[[orthostatic intolerance]] (OI) such as [[postural orthostatic tachycardia syndrome]] (POTS) or [[neurally mediated hypotension]] (NMH)
*[[Unrefreshing sleep|unrefreshing]] sleep See also: [[sleep disturbance]] <ref name="DiagnosticAlgorithm" /><ref name="IOM2015-clinicians" />
==== Other possible symptoms ====
*[[chronic pain]]
*[[immune system]]
*<span class="plainlinks">[[:Category:Neurological signs and symptoms|neurological signs and symptoms]]</span> See also: [[neuroinflammation]].
*[[List of symptoms in ME CFS|List of symptoms in ME/CFS]]

=== Comorbids ===
*[[fibromyalgia]] (FMS)
*[[irritable bowel syndrome]] (IBS)
*[[multiple chemical sensitivity]] (MCS)
*[[temporomandibular joint disorder]] (TMJ) <ref>[http://solvecfs.org/what-is-mecfs/ What is ME/CFS? - Solve ME/CFS Initiative]</ref>

=== Government guides on symptoms ===
'''US Government guides on symptoms'''
*[https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf Clinicians Guide] via The [[Institute of Medicine report]]
*[https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html CDC - ME/CFS Primary Symptoms]

'''Canada guides on symptoms'''
*[http://linkis.com/org/tUheh Alberta Clinicians Guide]

===Biological abnormalities===
Because there is currently no biomedical test for ME/CFS, many have incorrectly assumed that there are no [[List of abnormal findings in chronic fatigue syndrome and myalgic encephalomyelitis|medical abnormalities]] found in people with the disease. As a result, ME/CFS symptoms are often considered to be [[Medically unexplained physical symptoms|medically unexplained]], and therefore [[Psychologization|psychological]] in origin. While it is true that the disease is poorly understood, many biological abnormalities have been found in a range of different body systems, particularly in the [[central nervous system]], [[autonomic nervous system]], [[immune system]], and [[Metabolic|energy metabolism]].<ref name="IOM2015MECFS">{{Cite book | last1 = Institute of Medicine (US)| title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
| publisher = The National Academies Press | location = Washington, DC, US| date = February 10, 2015 | isbn = 978-0-309-31689-7| url = https://pubmed.ncbi.nlm.nih.gov/25695122/ }}</ref> Unfortunately, none have yet proved to be specific enough to ME/CFS as to be useful as a [[Diagnostic biomarker|biomarker]] of the illness, and many were identified in small studies, which need replication. Whilst there have been abnormalities identified to be associated with the illness, it cannot yet be determined whether these are a cause or consequence of the illness.
* [[Gastrointestinal system]]
* [[Natural killer cell]] findings

==== Notable studies ====
* [[Cytokine#Notable_studies|Cytokine ("Notable studies")]]
*Immune findings by [[Mady Hornig]] & [[Ian Lipkin]]<ref name="Hornig20150201immune">{{Cite journal | last1 = Hornig | first1 = Mady | authorlink1 = Mady Hornig | last2 = Montoya | first2 = José G | authorlink2 = Jose Montoya | last3 = Klimas | first3 = Nancy G | authorlink3 = Nancy Klimas | last4 = Levine | first4 = Susan | authorlink4 = Susan Levine | last5 = Felsenstein | first5 = Donna | authorlink5 = Donna Felsenstein | last6 = Bateman | first6 = Lucinda | authorlink6 = Lucinda Bateman | last7 = Peterson | first7 = Daniel L | authorlink7 = Daniel Peterson | last8 = Gottschalk | first8 = C Gunnar | authorlink8 = Gunnar Gottschalk | last9 = Schultz | first9 = Andrew F | authorlink9 = Andrew Schultz | last10 = Che | first10 = Xiaoyu | authorlink10 = Xiaoyu Che | last11 = Eddy | first11 = Meredith L | authorlink11 = Meredith Eddy | last12 = Komaroff | first12 = Anthony L | authorlink12 = Anthony Komaroff | last13 = Lipkin | first13 = W Ian | authorlink13 = Ian Lipkin | title = Distinct plasma immune signatures in ME/CFS are present early in the course of illness | journal = Science Advances | volume = 1 | issue = 1 | date = February 1, 2015 | url = http://advances.sciencemag.org/content/1/1/e1400121 }}</ref>
*[[List of enterovirus infection studies]]

*2014, [[Neuroinflammation]] Japanese Neuroinflammation study,<ref name="NakatomiY2014">{{Cite journal | last1 = Nakatomi | first1 = Yasuhito | authorlink1 = Yasuhito Nakatomi | last2 = Mizuno | first2 = Kei | authorlink2 = Kei Mizuno | last3 = Ishii | first3 = Ishii | authorlink3 = Akira Ishii | last4 = Yasuhiro | first4 = Wada | authorlink4 = Yasuhiro Wada | last5 = Masaaki | first5 = Tanaka | authorlink5 = Masaaki Tanaka | last6 = Shusaku | first6 = Tazawa | authorlink6 = Shusaku Tazawa | last7 = Kayo | first7 = Onoe | authorlink7 = Kayo Onoe | last8 = Sanae | first8 = Fukuda | authorlink8 = Sanae Fukuda | last9 = Joji | first9 = Kawabe | authorlink9 = Joji Kawabe | last10 = Kazuhiro | first10 = Takahashi | authorlink10 = Kazuhiro Takahashi | last11 = Yosky | first11 = Kataoka | authorlink11 = Yosky Kataoka | last12 = Susumu | first12 = Shiomi | authorlink12 = Susumu Shiomi | last13 = Kouzi | first13 = Yamaguti | authorlink13 = Kouzi Yamaguti | last14 = Masaaki | first14 = Inaba | authorlink14 = Masaaki Inaba | last15 = Hirohiko | first15 = Kuratsune | authorlink15 = Hirohiko Kuratsune | last16 = Yasuyoshi | first16 = Watanabe | authorlink16 = Yasuyoshi Watanabe | title = Neuroinflammation in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: An ¹¹C-(R)-PK11195 PET Study | journal = Journal of Nuclear Medicine | volume = 55|issue =6 | page = 945-50 | date = Mar 24, 2014 | pmid = 24665088 | doi = 10.2967/jnumed.113.131045| url = http://jnm.snmjournals.org/content/55/6/945.long}}</ref> Younger's Leptin study<ref name="stanfordleptin" />
* 2014, Right Arcuate Fasciculus Abnormality in Chronic Fatigue Syndrome<ref name="Zeineh2014">{{Cite journal | last = Zeineh | first = Michael M. | author-link = Michael Zeineh | last2 = Kang | first2 = James | authorlink2 = | last3 = Atlas | first3 = Scott W. | authorlink3 = | last4 = Raman | first4 = Mira M. | authorlink4 = | last5 = Reiss | first5 = Allan L. | authorlink5 = | last6 = Norris | first6 = Jane L. | authorlink6 = | last7 = Valencia | first7 = Ian | authorlink7 = Ian Valencia | last8 = Montoya | first8 = Jose G. | authorlink8 = Jose Montoya | date = Feb 2015 | title = Right Arcuate Fasciculus Abnormality in Chronic Fatigue Syndrome|url=http://pubs.rsna.org/doi/10.1148/radiol.14141079|journal=Radiology|language=en|volume=274|issue=2 | pages = 517–526|doi=10.1148/radiol.14141079|issn=0033-8419|pmc=|pmid=|access-date=|quote=|via=}}</ref>
<blockquote>Bilateral [[white matter]] atrophy is present in CFS. No differences in perfusion were noted. Right hemispheric increased FA may reflect degeneration of crossing fibers or strengthening of short-range fibers. Right anterior arcuate FA may serve as a [[Diagnostic biomarker|biomarker]] for CFS.</blockquote>
:*2014, [[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014)|''Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder'' By David Tuller - New York Times: Well]]
[[File:ME-CFS Brain Images.jpg|500px|thumb|center|Top scans: Healthy control patient; Bottom scans: chronic fatigue syndrome (CFS) patient. Image By: [[Michael Zeineh]]]]

*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)]
*2016, ''[[Metabolic features of chronic fatigue syndrome]]''

*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]]''
**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 = 2018-12-14|access-date=|website=YouTube | last = Younger | first=Jarred | authorlink=Jarred Younger|archive-url=|archive-date=|publisher=SolveCFS}}</ref> (TALK)

===Causes & triggers===
*Outbreaks - see [[List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks|List of outbreaks]]
*Possible infectious triggers: [[Enterovirus]]es, [[Herpesvirus]]es including [[Epstein-Barr virus]]<ref name="Hickie2006">{{Cite journal | last1 = Hickie | first1 = Ian | authorlink1 = Ian Hickie | last2 = Davenport | first2 = Tracey | authorlink2 = Tracey Davenport | last3 = Wakefield | first3 = Denis | authorlink3 = Denis Wakefield | last4 = Vollmer-Conna | first4 = Ute | authorlink4 = Ute Vollmer-Conna | last5 = Cameron | first5 = Barbara | authorlink5 = Barbara Cameron | last6 = Vernon | first6 = Suzanne D | authorlink6 = Suzanne Vernon | last7 = Reeves | first7 = William C | authorlink7 = William Reeves | last8 = Lloyd | first8 = Andrew | authorlink8 = Andrew Lloyd | last9 = Dubbo Infection Outcomes Study Group| title = Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study| journal = BMJ | volume = 333| issue=575 | date = Sep 14, 2006 | pmid = 16950834 | doi = 10.1136/bmj.38933.585764.AE| url = http://www.bmj.com/content/333/7568/575.long }}</ref> [[Q fever]]<ref name="Hickie2006" />, [[Ross River virus]],<ref name="Hickie2006" /> potentially [[Ebola]],<ref name="Hickie2006" />
*Non-viral triggers - physical or psychological [[trauma]], chemical exposure

===Epidemiology===
Prevalence estimates for ME/CFS range between 0.2-2.5%, depending on the definition of the illness used.<ref name="ICC2011criteria" /> In the US, estimates range between 836,000 and 2.5 million people with the illness, though true numbers are under-reported. It is estimated that 84-91% of people with the illness remain undiagnosed.<ref name="IOM2015MECFS" />

*Level of disability (eg, Norwegian study HRQoL by Hvidberg, 2015) suggests quality of life is LOWER than for many cancers, heart diseases, brain stroke, diabetes I & II, rheumatoid arthritis, chronic renal failure, sclerosis, schizophrenia, COPD, etc)<ref name="Hvidberg2015">{{Cite journal | last1 = Hvidberg | first1 = Michael Falk | authorlink1 = Michael Falk Hvidberg | last2 = Brinth | first2 = Louise Schouborg | authorlink2 = Louise Schouborg Brinth | last3 = Olesen | first3 = Anne V | authorlink3 = Anne V Oleson | last4 = Petersen | first4 = Karin D | authorlink4 = Karin Peterson | last5 = Ehlers | first5 = Lars | authorlink5 = Lars Ehlers | title = The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)| journal = PLoS One | date = Jul 6, 2015 | doi = 10.1371/journal.pone.0132421| url = http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421}}</ref>

===Severely ill patients===
Considerable variation exists in the severity of the illness. The [[International Consensus Criteria]] lists the following severity levels (it should be noted that even "mild" ME/CFS consists of significant debility):

*Mild = 50% reduction in pre-illness activity levels
*Moderate = mostly housebound
*Severe = mostly bedridden
*Very Severe = totally bedridden, and needing help with basic functions.

At least [[Severe and very severe ME|25% of people with ME/CFS are bed-bound or housebound]], often for years or even decades, so are largely an invisible population.<ref name="IOM2015MECFS" /> So invisible in fact, that they have rarely been included as part of research because their level of debility precludes them from traveling to laboratories for required testing. The [[Open Medicine Foundation]]'s [[ME/CFS Severely Ill, Big Data Study]] will be the first in-depth study of people with a severe form of ME/CFS.

Notable patients with severe ME/CFS include [[Whitney Dafoe]], [[Karina Hansen]] (had been sanctioned), [[Laura Hillenbrand]], [[Tom Kindlon]], [[Doctor Speedy]], [[Naomi Whittingham]], [[Jennifer Brea|Jen Brea]], and [[Emma Shorter]].

Though uncommon, there have been [[Causes of death|instances of deaths which have been attributed to the disease]]. (See: [[Sophia Mirza]] and [[Merryn Crofts]].) Also, see [[Vanessa Li]] and [[Lynn Gilderdale]].

===Centers for Disease Control and Prevention (CDC) ===
*Jul 3, 2017, the [[Centers for Disease Control and Prevention|CDC]]'s Chronic Fatigue Syndrome page has been changed to [[ME/CFS|Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]] (ME/CFS) and [[graded exercise therapy]] (GET) and [[cognitive behavioral therapy]] (CBT) recommendations have been removed.<ref>{{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 = 2017-07-10 | website = [[Virology blog]]|language=en-US|archive-url=|archive-date=|access-date=2018-08-23}}</ref><ref>{{Cite web|url=https://www.cdc.gov/me-cfs/index.html | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | date = 2018-07-03 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-08-23}}</ref>

*Jul 12, 2018, the "Information for Healthcare Providers" tab and its sub-tabs were updated.<ref>[https://www.cdc.gov/me-cfs/healthcare-providers/index.html Information for Healthcare Providers - ME/CFS - CDC.gov]</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 {{!}} CDC | date = 2018-07-12 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-08-23}}</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|archive-url=|archive-date= | last2 = Medscape}}</ref>

'''MEAction input'''
*Jul 29, 2018, [https://www.meaction.net/2018/07/29/cdc-revises-its-information-on-me/ CDC Revises its Information on ME] [[The MEAction Network]] 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.

== Tests ==
* [[Natural killer cell]] (NKC) Blood Test

* Sleep study for [[sleep apnea]], [[Restless legs syndrome|restless leg syndrome]], and other sleep disturbances.
* [[Tilt table test]] for [[Orthostatic intolerance|OI]] or [[Postural orthostatic tachycardia syndrome|POTS]].

==Treatments==
There are currently no [[FDA]] approved treatments for ME/CFS. Treatments consist mostly of symptom management, rather than treatment of the underlying cause of the condition, which is not yet understood.<ref name="IACFSME2014primer">{{Cite web | last1 = International Association for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (IACFS/ME) | 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 | title = 2014 Primer for Clinical Practitioners (CFS/ME) | journal = IACFS/ME| date = Jul 2014| url = https://www.massmecfs.org/images/pdf/Primer_2014.pdf }}</ref> There are many [[:Category:Potential_treatments|potential treatments]], though their evidence-base is limited, as most research into treatments has gone into psychological approaches to treatment.

=== Drugs ===
[[File:Ampligen.jpg|200px|thumb|right|Ampligen]]
Two treatments that have garnered much attention are [[Ampligen]], produced by [[AIM ImmunoTech]], and [[Rituximab]]. Many people have reported benefit from Ampligen;<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 [[United States]] have failed so it is unavailable to many.<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 | first = | date = Aug 23, 2016|work=GlobeNewswire News Room|access-date=2018-08-13|archive-url=|archive-date=|language=en-US}}</ref><ref>{{Cite news | url=http://cdn2.hubspot.net/hubfs/150154/docs/Hemispherx-Executive-Informational-Overview-11-27-16.pdf | title = Hemispherx Biopharma, Inc. Executive Informational Overview | last = | first = | date = Nov 27, 2016|work=Crystal Research Associates|access-date=|archive-url=|archive-date=|format=PDF}}</ref> Also in 2016, it was made available on a limited basis in Europe.<ref>{{Cite web|url=https://www.bizjournals.com/philadelphia/news/2016/07/25/hemispherx-ships-ampligen-for-european-chronic.html | title = Hemispherx ships Ampligen for European chronic fatigue syndrome program | last = George | first = John | date = Jul 25, 2016 | website = bizjournals.com|archive-url=|archive-date=|access-date=2018-08-13}}</ref> In July of 2018, AIM ImmunoTech announced the expansion of its [[compassionate use|Treatment Protocol/Expanded Access Programs]] (compassionate use) for ME/CFS in the United States, known as '''AMP-511''', to new patients.<ref>[http://www.4-traders.com/HEMISPHERX-BIOPHARMA-INC-31148494/news/Hemispherx-BioPharma-Opens-FDA-Approved-Reimbursement-Based-Expanded-Access-Treatment-Program-for-26862569/ Hemispherx BioPharma : Opens FDA-Approved Reimbursement Based Expanded Access Treatment Program for ME/CFS to New Enrollees - 4 Traders]</ref> AMP-511 "will allow treatment of up to 100 [[ME/CFS]] patients at any one time at approved clinical infusion therapy sites."<ref>{{Cite web|url=https://finance.yahoo.com/news/hemispherx-biopharma-inc-announces-advancement-133000883.html | title = Hemispherx Biopharma Inc. Announces Advancement in Expanded Access Program for Ampligen in the Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | last = | first = | authorlink = | date = Jan 2, 2019 | website = finance.yahoo.com|publisher=GlobeNewswire|language=en-US|archive-url=|archive-date=|access-date=2019-02-10}}</ref> The most recent Ampligen trial was published in 2020.<ref name="Strayer2020">{{Cite journal | title = Effect of disease duration in a randomized Phase III trial of rintatolimod, an immune modulator for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2020-10-29|url=https://dx.plos.org/10.1371/journal.pone.0240403|journal=PLOS ONE|volume=15|issue=10| pages = e0240403 | last = Strayer | first=David R. | author-link = David Strayer | last2 = Young | first2 = Diane | author-link2 = | last3 = Mitchell | first3 = William M. | authorlink3 = William Mitchell|language=en|doi=10.1371/journal.pone.0240403|pmc=PMC7595369|pmid=33119613|access-date=|issn=1932-6203|quote=|via=}}</ref>

[[Rituximab]], a lymphoma drug, had shown promising results in initial trials in Norway,<ref name="FlugeMain2015">{{Cite journal | last = Fluge | first = Øystein | authorlink = Øystein Fluge | last2 = Risa | first2 = Kristin | authorlink2 = | last3 = Lunde | first3 = Sigrid | author-link3 = | last4 = Alme | first4 = Kine | author-link4 = | last5 = Rekeland | first5 = Ingrid Gurvin | authorlink5 = | last6 = Sapkota | first6 = Dipak | authorlink6 = | last7 = Kristoffersen | first7 = Einar Kleboe | last8 = Sørland | first8 = Kari | last9 = Bruland | first9 = Ove | date = 2015-07-01 | editor-last = van der Feltz-Cornelis|editor-first = Christina | title = B-Lymphocyte Depletion in Myalgic Encephalopathy/ Chronic Fatigue Syndrome. An Open-Label Phase II Study with Rituximab Maintenance Treatment|url=http://dx.plos.org/10.1371/journal.pone.0129898|journal=PLOS ONE|language=en|volume=10|issue=7| pages = e0129898|doi=10.1371/journal.pone.0129898|issn=1932-6203|pmc=4488509|pmid=26132314|access-date=|quote=|via=}}</ref> and there were groups crowdsourcing funding for further trials in other countries. In 2017, Drs. [[Øystein Fluge]] and [[Olav Mella]] announced that their Rituximab trial had failed. They stated that they would focus their efforts on attempting to identify a subgroup of ME/CFS patients with an immune profile that would be responsive to Rituximab.<ref>{{Cite web|url=http://simmaronresearch.com/2017/11/norwegian-rituximab-chronic-fatigue-syndrome-mecfs-trial-fails/ | title = Norwegian Rituximab Chronic Fatigue Syndrome (ME/CFS) Trial Fails | date = 2017-11-26 | website = Simmaron Research|language=en-US|access-date=2019-04-23}}</ref> A phase III trial published in 2019 showed Rituximab did 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 he will be undertaking a trial of [[low dose naltrexone]] ([[LDN]]) in ME/CFS.<ref>{{Cite web|url=https://www.youtube.com/watch?v=95OlnK-FEdk | title = 2017 Study -- Low Dose Naltrexone for Chronic Fatigue Syndrome | last = Younger | first=Jarred | date = 2016-12-12 | website = YouTube|publisher=Younger Lab|archive-url=|archive-date=|access-date=}}</ref>

=== Treating other conditions ===
Different forms of [[Orthostatic intolerance|OI]] are treated with beta-blockers (Metopropol), [[Fludrocortisone]] (Florinef), and [[Mestinon|Pyridostigmine]].<ref name="ICP2011primer">{{citation | last1 = Carruthers | first1 = BM | authorlink1 = Bruce Carruthers | last2 = van de Sande | first2 = MI | authorlink2 = Marjorie van de Sande | last3 = De Meirleir | first3 = KL | authorlink3 = Kenny de Meirleir | last4 = Klimas | first4 = NG | authorlink4 = Nancy Klimas | last5 = Broderick | first5 = G | authorlink5 = Gordon Broderick | last6 = Mitchell | first6 = T | authorlink6 = Terry Mitchell | last7 = Staines | first7 = D | authorlink7 = Donald Staines | last8 = Powles | first8 = ACP | authorlink8 = A C Peter Powles | last9 = Speight | first9 = N | authorlink9 = Nigel Speight | last10 = Vallings | first10 = R | authorlink10 = Rosamund Vallings | last11 = Bateman | first11 = L | authorlink11 = Lucinda Bateman | last12 = Bell | first12 = DS | authorlink12 = David Bell | last13 = Carlo-Stella | first13 = N | authorlink13 = Nicoletta Carlo-Stella | last14 = Chia | first14 = J | authorlink14 = John Chia | last15 = Darragh | first15 = A | authorlink15 = Austin Darragh | last16 = Gerken | first16 = A | authorlink16 = Anne Gerken | last17 = Jo | first17 = D | authorlink17 = Daehyun Jo | last18 = Lewis | first18 = DP | authorlink18 = Donald Lewis | last19 = Light | first19 = AR | authorlink19 = Alan Light | last20 = Light | first20 = KC | authorlink20 = Kathleen Light | last21 = Marshall-Gradisnik | first21 = S | authorlink21 = Sonya Marshall-Gradisnik | last22 = McLaren-Howard | first22 = J | authorlink22 = John McLaren-Howard | last23 = Mena | first23 = I | authorlink23 = Ismael Mena | last24 = Miwa | first24 = K | authorlink24 = Kunihisa Miwa | last25 = Murovska | first25 = M | authorlink25 = Modra Murovska | last26 = Stevens | first26 = SR | authorlink26 = Staci Stevens | title = Myalgic encephalomyelitis: Adult & Paediatric: International Consensus Primer for Medical Practitioners | date = 2012| isbn = 978-0-9739335-3-6 | url = http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf}}</ref> When treating other diseases, illnesses, and conditions, and ME/CFS comorbidities or overlapping conditions such as sleep difficulties, cognitive problems, pain, and other symptoms it is important to remember that patients are [[Medicine sensitivities|sensitive to medications]].<ref name=":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) {{!}} CDC|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" /><ref name="Carruthers, 2003" />

===Exercise as treatment===
[[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]]
Two common treatment recommendations for ME/CFS are [[GET]] and [[CBT]]. These treatments are based on the disproven hypothesis that the illness might have begun with a viral infection but has been perpetuated by [[deconditioning]] from lack of activity, and [[illness beliefs|fear and avoidance of activity]]. GET and CBT are aimed at addressing these hypothesized causes by challenging the unhelpful thoughts that are claimed to result in avoidance of activity, and by increasing fitness through a gradual increase in exercise. These treatments are controversial and are at odds with much of the research literature, which provides evidence that exercise is harmful to people with ME/CFS. A large patient survey of treatment responses found that 74% of people who had tried GET, reported that their symptoms subsequently worsened,<ref name="MEASSUK20150529survey">{{Cite web | last1 = ME Association (UK) | authorlink1 = ME Association | date = May 29, 2015 | title = Our CBT, GET and Pacing Report calls for major changes to therapies offered for ME/CFS| url = http://www.meassociation.org.uk/2015/05/23959/ }}</ref> which is consistent with other patient surveys.<ref name="Phoenix20160222Norway2012">{{citation | title = Norwegian patient survey: Experiences of therapeutic approaches (2012) | journal = Phoenix Rising Forum | date = Feb 22, 2016| url = http://forums.phoenixrising.me/index.php?threads/norwegian-patient-survey-experiences-of-therapeutic-approaches-2012-update.43193/ }}</ref>

The [[PACE trial]], published in 2011, is the largest GET trial ever conducted. It has received much publicity as a result of its recovery rate claims, though it has come under strong criticism from within both the scientific and patient community for significant flaws in its design, and for overstating (and in some cases misrepresenting) outcomes in both the initial trial, and follow-up studies.<ref name="Coyne2016">{{Cite journal | last = Coyne | first = James Charles | last2 = Laws | first2 = Keith R | date = 2016 | title=Results of the PACE follow-up study are uninterpretable|url=http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00551-9/fulltext|journal=The Lancet Psychiatry|language=English|volume=3|issue=2| pages = e6–e7|doi=10.1016/S2215-0366(15)00551-9|issn=2215-0366|via=}}</ref> The study was the subject of a series of investigative pieces by journalist [[David Tuller]] in late 2015, that were highly critical of the trial.<ref name="viroblogMECFS" /> A petition signed by almost 12,000 ME/CFS patients and allies,<ref name="MEACTIONpacepetition">{{Cite web | last1 = #MEAction | authorlink1 = #MEAction| title = Petition: Misleading Claims Should Be Retracted
| publisher = #MEAction | date = Oct 2015 | url = http://my.meaction.net/petitions/pace-trial-needs-review-now}}</ref> and an open letter signed by 42 ME/CFS experts from around the world,<ref name="openletrLANCET2">{{Cite web | last1 = Davis | first1 = Ronald W | authorlink1 = Ronald Davis | last2 = Edwards | first2 = Jonathan C W | authorlink2 = Jonathan Edwards | last3 = Jason | first3 = Leonard A | authorlink3 = Leonard Jason | last4 = Levin | first4 = Bruce | authorlink4 = Bruce Levin | last5 = Racaniello | first5 = Vincent R | authorlink5 = Vincent Racaniello | last6 = Reingold | first6 = Arthur L | authorlink6 = Arthur Reingold | last7 = Ablashi | first7 = Dharam V | authorlink7 = Dharam Ablashi | last8 = Baraniuk | first8 = James N | authorlink8 = James Baraniuk | last9 = Barcellos | first9 = Lisa F | authorlink9 = Lisa Barcellos | last10 = Bateman | first10 = Lucinda | authorlink10 = Lucinda Bateman | last11 = Bell | first11 = David S | authorlink11 = David Bell | last12 = Bested | first12 = Alison C | authorlink12 = Alison Bested | last13 = Broderick | first13 = Gordon | authorlink13 = Gordon Broderick | last14 = Chia | first14 = John | authorlink14 = John Chia | last15 = Chu | first15 = Lily | authorlink15 = Lily Chu | last16 = Enlander | first16 = Derek | authorlink16 = Derek Enlander | last17 = Fletcher | first17 = Mary Ann | authorlink17 = Mary Ann Fletcher | last18 = Friedman | first18 = Kenneth | authorlink18 = Kenneth Friedman | last19 = Kaufman | first19 = David L | authorlink19 = David Kaufman | last20 = Klimas | first20 = Nancy | authorlink20 = Nancy Klimas | last21 = Lapp | first21 = Charles W | authorlink21 = Charles Lapp | last22 = Levine | first22 = Susan | authorlink22 = Susan Levine | last23 = Light | first23 = Alan R | authorlink23 = Alan Light | last24 = Marshall-Gradisnik | first24 = Sonya | authorlink24 = Sonya Marshall-Gradisnik | last25 = Medveczky | first25 = Peter G | authorlink25 = Peter Medveczky | last26 = Nahle | first26 = Zaher | authorlink26 = Zaher Nahle | last27 = Oleske | first27 = James M | authorlink27 = James Oleske | last28 = Podell | first28 = Richard N | authorlink28 = Richard Podell | last29 = Shepherd | first29 = Charles | authorlink29 = Charles Shepherd | last30 = Snell | first30 = Christopher R | authorlink30 = Christopher Snell | last31 = Speight | first31 = Nigel | authorlink31 = Nigel Speight | last32 = Staines | first32 = Donald | authorlink32 = Donald Staines | last33 = Stark | first33 = Philip B | authorlink33 = Philip Stark | last34 = Stein | first34 = Eleanor | authorlink34 = Eleanor Stein | last35 = Swartzberg | first35 = John | authorlink35 = John Swartzberg | last36 = Tompkins | first36 = Ronald G | authorlink36 = Ronald Tompkins | last37 = Underhill | first37 = Rosemary | authorlink37 = Rosemary Underhill | last38 = Vallings | first38 = Rosamund | authorlink38 = Rosamund Vallings | last39 = VanElzakker | first39 = Michael | authorlink39 = Michael VanElzakker | last40 = Weir | first40 = William | authorlink40 = William Weir | last41 = Zinn | first41 = Marcie L | authorlink41 = Marcie Zinn | last42 = Zinn | first42 = Mark A | authorlink42 = Mark Zinn | title = An open letter to the Lancet - again | date = Feb 10, 2016| website = [[Virology blog]]| url = http://www.virology.ws/2016/02/10/another-request-for-data-from-the-pace-trial/}}</ref> were sent to The Lancet, both calling for the data to be reanalyzed. Twenty-four ME/CFS organizations from 14 different countries have written to Queen Mary University London requesting that the trial data be released for reanalysis.<ref name="MEACTION20160313openletr">{{Cite web | last1 = #MEAction | authorlink1 = #MEAction | title = 24 organisations in 14 countries tell QMUL: Release the PACE data | date = Mar 13, 2016| url = http://www.meaction.net/2016/03/13/24-organisations-in-14-countries-tell-qmul-release-pace-data/#comment-2518 }}</ref> To date, the authors of the trial and editor of The Lancet have refused such requests. Despite such criticism, the PACE trial continues to influence both government and the medical profession's approach to the treatment of ME/CFS in many countries.

One of the reasons that exercise may be harmful to people with ME/CFS, is the presence of [[post-exertional malaise]] (PEM), which is an exacerbation of symptoms following physical, mental or even emotional [[exertion]]. Studies have revealed immunological, muscular, [[Nervous system|neurological]], [[Autonomic nervous system|autonomic]] and [[Cardiovascular system|cardiovascular]] abnormalities in response to exercise in people with ME/CFS. As these results are not also found in healthy sedentary people, the adverse effects of exercise cannot be said to be due to deconditioning.<ref name="TwiskF2015">{{Cite journal | last1 = Twisk | first1 = Frank NM | authorlink1 = Frank Twisk | last2 = Geraghty | first2 = Keith J | authorlink2 = Keith Geraghty | title = Deviant Cellular and Physiological Responses to Exercise in Myalgic Encephalomyelitis and Chronic Fatigue Syndrome | journal = Jacobs Journal of Physiology | volume = 1|issue =2|page =007 | date = Jul 11, 2015 | url = http://www.jacobspublishers.com/images/Physiology/J_J_Physiology_1_2_007.pdf }}</ref>{{citation needed|reason=Workwell Foundation studies need to be cited here.}}{{citation needed|reason=The Lights epigenetic changes post-exercise study needs to be cited here.}}

People with ME/CFS should approach exercise with caution, as there is much potential for harm.

[[Anaerobic]] threshold, use of heart rate monitors for activity and pacing. Analeptic, not aerobic.
[[Energy Envelope Theory|Energy envelope]]/[[pacing]] - people do better if stay within their envelope than to push to increase activity

===Graded exercise therapy & Cognitive behavioral therapy ===
[[File:Emma Shorter.JPG|400px|thumb|right|[[Emma Shorter]], is a citizen of [[Scotland]]. Here, she gives testimony before Parliament's Petitions Committee on [[GET]] and how it put her in a wheelchair]]

[[Graded exercise therapy|GET]] and [[Cognitive behavioral therapy|CBT]] are usually employed in the [[United Kingdom|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 disproven [[biopsychosocial model]] of ME/CFS, backed up by the flawed [[PACE trial]] which used the flawed [[Oxford criteria]] to diagnose and recruit patients, GET and CBT found its way into treating people with ME/CFS.

[[Exercise]], especially GET, can harm an ME/CFS patient further.

*[[Jennifer Brea]] walked home from her Neurologist's office and became [[severe and very severe ME|wheelchair-bound]].
*This is an experience of serious injury due to GET shared [https://twitter.com/TomKindlon/status/846425974052966400 by K. Miles, via Tom Kindlon on Twitter].
*[[Emma Shorter]] was able to walk a few minutes a day until GET put her in a wheelchair.
*[[Maik Speedy|Dr Maik Speedy]] was also seriously injured by GET and has been bedbound since.
*British MP [[Brynmor John]] collapsed outside the House of Commons gym in 1998 and died, as a result of following his doctor's advice to exercise back to health.

=== Claims of recovery and cures ===
Charlatans claim they can cure CFS (per the CDC "there is no cure"<ref name="treatments">{{Cite web|url=https://www.cdc.gov/me-cfs/treatment/index.html | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) {{!}} Treatment | last = | first = | date = 2018-07-03 | website = [[Centers for Disease Control and Prevention]]|language=en-us|archive-url=|archive-date=|access-date=2021-11-22}}</ref>) when in reality they may be able to treat [[chronic fatigue]] (CF) which is not the result of the neurological illness CFS. Some people misdiagnosed and "recovered" from CFS most likely had CF which can be caused by many illnesses, diseases, and drug therapies or a bad year or two perhaps with [[mononucleosis]] followed by a bout or two of [[influenza]]. These individuals were experiencing a proper immune response whereas ME/CFS patients experience an ongoing improper immune response and other abnormalities for at least 6 months straight with a reduction in activity with a specific symptom set for at least 50% of the time.<ref name="etiology">{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/etiology-pathophysiology.html | title = Etiology and Pathophysiology {{!}} Presentation and Clinical Course {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2018-07-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-09-07}}</ref><ref>{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html | title = IOM 2015 Diagnostic Criteria {{!}} Diagnosis {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2018-07-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-09-07}}</ref><ref>{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/approach-to-diagnosis.html | title = Proposed Approach to ME/CFS Diagnosis in Children and Adults {{!}} Diagnosis {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2018-07-12 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-09-07}}</ref>

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]], [[:Category:Supplements|supplementation]], and [[:Category:Diets|diet changes]] <ref name=":7" /><ref name=":8" /><ref name=":9" /><ref name=":10" /> that may have had [[overtraining syndrome]],<ref name="spence" /> while some people with [[Addison's disease]] (adrenal failure) are erroneously diagnosed with CFS.<ref name="ICP2011primer" /><ref name="Carruthers, 2003" />

== Notable studies ==
*[[Pathways to prevention report]] (P2P)
*[[Institute of Medicine report]]
*[[PACE trial]] is a highly criticized UK trial designed by psychiatrists to promote [[GET]] and [[CBT]] as therapy which is deemed harmful and useless for ME/CFS patients by many clinicians, researchers, patients, and advocates.

== Continuing education (CME and CE) ==
* [https://www.msms.org/Education/On-Demand-Webinars/Webinar/1059 Update on Chronic Fatigue Syndrome Part 1: Clinical Diagnostic Criteria for Chronic Fatigue Syndrome/CFS now called Myalgic Encephalomyelitis or ME/CFS]<ref>{{Cite web|url=https://www.msms.org/Education/On-Demand-Webinars/Webinar/1059 | title = Update on Chronic Fatigue Syndrome Part 1: Clinical Diagnostic Criteria for Chronic Fatigue Syndrome/CFS now called Myalgic Encephalomyelitis or ME/CFS | last = Bateman | first = Lucinda | authorlink=Lucinda Bateman|publisher=Michigan State Medical Society|via=On-Demand Webinars|archive-url=|archive-date=|access-date=2019-02-25}}</ref> (CME)
* [https://www.msms.org/Education/On-Demand-Webinars/Webinar/1060 Update on Chronic Fatigue Syndrome Part 2: Uniting Compassion, Attention and Innovation to treat ME/CFS.]<ref>{{Cite web|url=https://www.msms.org/Education/On-Demand-Webinars/Webinar/1060 | title = Update on Chronic Fatigue Syndrome Part 2: Uniting Compassion, Attention and Innovation to treat ME/CFS. | last=Bateman | first = Lucinda | authorlink=Lucinda Bateman|website=Michigan State Medical Society|via=On Demand Webinars|archive-url=|archive-date=|access-date=2019-02-25}}</ref> (CME)
* [https://www.medscape.org/viewarticle/907632?src=acdmpart_cdc Diagnosing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experts Weigh In]<ref>{{Cite web|url=https://www.medscape.org/viewarticle/907632?src=acdmpart_cdc | title = Diagnosing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experts Weigh In | last = Bateman | first = Lucinda | authorlink=Lucinda Bateman | last2 = Azar | first2 = Natalie | authorlink2 = Natalie Azar | date = |publisher=Medscape|archive-url=|archive-date=|access-date=2019-02-25 | last3 = Klimas | first3 = Nancy | authorlink3 = Nancy Klimas | last4 = Montoya | first4 = Jose | authorlink4 = Jose Montoya}}</ref> (CME/CE)
* [https://www.unrest.film/cme Watch ''Unrest'' and Receive Continuing Medical Education (CME /CE) Credit]<ref>{{Cite web|url=https://www.unrest.film/cme | title = Unrest Continuing Medical Education Program | date = |website=UNREST|language=en-US | last = Indiana University School of Medicine | last2 = American Medical Women's Association|archive-url=|archive-date=|access-date=2019-02-25}}</ref>

==History==
*[[Osler's Web]] is a book by [[Hillary Johnson]] on the early history of CFS.
*[[Thirty Years of Disdain]] by [[Mary Dimmock]] and Matthew Lazell-Fairman picks up on the ME/CFS history where Osler's Web leaves off.

=== Deaths of ME/CFS patients ===
*[[Causes of death]]
*[[Suicide]]

'''Death certificates with ME or CFS'''
*[[Merryn Crofts]]' death is attributed to ME.
*[[Sophia Mirza]]'s death is attributed to CFS.

In the UK, United States, and Australia there are further reports of loved ones who have died due to ME/CFS.<ref>{{Cite news | url=https://www.newscientist.com/letter/mg19125620-600-not-sadly-the-first/ | title = Not, sadly, the first|work=New Scientist|access-date=2018-08-23|language=en-US}}</ref> See Editor's Note<ref>{{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 = 2006-06-16|work=New Scientist|access-date=2018-08-23|archive-url=|archive-date=|language=en-US}}</ref>

==See also==
*[[List of systematic reviews about ME/CFS/SEID]]
*[[International Consensus Criteria]] - with primer for clinicians
*[[misdiagnosis of myalgic encephalomyelitis and chronic fatigue syndrome]]
*[[Fibromyalgia]]
*[[PACE trial]]
*[[Primer for patients]]
*[[Primer for the public#Disease_names_and_acronyms_around_the_world|Primer for the public (''Disease names and acronyms around the world'' section)]]
==Learn more==
'''Films'''
*''[[Forgotten Plague]]'' is a US documentary about [[Ryan Prior]], an afflicted journalist who investigates the disease and its history and why the CDC has left millions sidelined from life; available for [http://www.forgottenplague.com/ streaming and DVD purchase]. (2015)
[[File:Forgotten Plague.jpeg|200px|thumb|center]]
*[[Unrest|''Unrest'']] is a US documentary film that aired on PBS's ''Independent Lens'' in 2018 and is available for [https://www.unrest.film/watch/#digital streaming] and [https://www.unrest.film/store/ DVD purchase]. [[Jennifer Brea]], a person with [[myalgic encephalomyelitis|ME]], directs. (2017)
[[File:Unrest.jpg|400px|thumb|center]]

'''ME/CFS organization's and researcher's material'''
*[https://www.youtube.com/watch?v=hRdn4A2SGic Beyond the Data – Chronic Fatigue Syndrome: Advancing Research and Clinical Education]<ref>{{Cite web|url=https://www.youtube.com/watch?v=hRdn4A2SGic | title = Beyond the Data – Chronic Fatigue Syndrome: Advancing Research and Clinical Education | last = Iskander | first=John | last2 = Komaroff | first2 = Anthony | date = 2016-02-17 | website = YouTube|publisher=Centers for Disease Control and Prevention (CDC)|archive-url=|archive-date=|access-date=}}</ref>
*[https://drive.google.com/file/d/1h_ZwdR4567k-mSoWahnC_id0F_fAA3Fb/view Caring for People with Myalgic Encephalomyelitis]<ref>{{Cite news | url=https://drive.google.com/file/d/1h_ZwdR4567k-mSoWahnC_id0F_fAA3Fb/view | title = Caregivers Guide to ME|type=pdf | last = | first = | date = 2018 | work=Google Docs|access-date=2018-08-23|archive-url=|archive-date=|publisher=#MEAction}}</ref>
*[https://www.massmecfs.org/images/pdf/Primer_2014.pdff IACFS/ME Primer for Clinical Practitioners - 2014 Edition]<ref name="IACFSME2014primer" />
*[http://www.meassociation.org.uk/2014/07/our-purple-booklet-clear-clinical-guidance-and-the-latest-research-all-wrapped-up-in-52-pages/ ME Association clinical guidance]<ref name="MEASSUKprimer2013">{{Cite web | last1 = Shepherd | first1 = C | authorlink1 = Charles Shepherd | last2 = Chaudhuri | first2 = A | authorlink2 = Abhijit Chaudhuri | title = ME/CFS/PVFS An Exploration of the Key Clinical Issues ('Purple Booklet') | date = 2013| url = http://www.meassociation.org.uk/wp-content/uploads/2011/01/pruple-booklet-front-cover.jpg }}</ref>
*[http://youtu.be/c2vIQ92wU9Y ME/CFS Diagnosis and Name with Dr Nancy Klimas (video)]<ref>{{Cite web|url=https://www.youtube.com/watch?v=c2vIQ92wU9Y&feature=youtu.be | title = ME/CFS Diagnosis and Name with Dr. Nancy Klimas | last = Klimas | first = Nancy | date = 2014-06-21 | website = YouTube|publisher=ME/CFS Community|archive-url=|archive-date=|access-date=}}</ref>
*[http://treatmentcenterforcfs.com/documents/MECFSTreatmentResourceGuideforPractitioners.pdf ME/CFS Treatment Resource Guide for Practitioners by A Martin Lerner, MD]<ref name="LernerPrimer2011">{{Cite web | last1 = Lerner | first1 = AM | authorlink1 = A Martin Lerner| title = ME/CFS Treatment Resource Guide for Practitioners| date = 2011| url = http://treatmentcenterforcfs.com/documents/MECFSTreatmentResourceGuideforPractitioners.pdf }}</ref>
*[http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf Myalgic Encephalomyelitis - Adult & Pediatric - International Consensus Criteria Primer for Medical Practitioners]<ref name="ICP2011primer" />
*[http://www.openmedicinefoundation.org/what-is-mecfs/ What is ME/CFS?]<ref name="whatis">{{Cite news | url=https://www.omf.ngo/what-is-mecfs/ | title = What is ME/CFS?|website=[[Open Medicine Foundation]]|access-date=2018-08-23|language=en-US}}</ref>

'''[[Patient mental health]]'''

:Patients who were deemed as suffering from mental health rather than a biological illness:
:*[[Karina Hansen]] is a young [[Denmark|Danish]] woman taken from her family for 3 1/2 years due to [[Per Fink]]'s insistence her ME was due to mental health issues.
:*[[Sophia Mirza]] was taken forcibly from her home to a mental hospital only to be returned shortly after; she then died of ME.
:*[[Ean Proctor]] was taken from his parents as a young boy and he was told his "parents were letting him die." He had become [[paralysis|paralyzed]] and mute and was let go in the deep end of a pool to make him swim, and put on a scary theme park ride to scare him into moving.

'''More mental health information'''
*ME/CFS is not [[depression]]. It causes a lack of energy, not a lack of desire to do activities.<ref name="Griffith, 2008">{{Cite journal | last1 = Griffith | first1 = J.P. | authorlink1 = | last2 = Zarrouf | first2 = F.A. | authorlink2 = | title = A Systematic Review of Chronic Fatigue Syndrome: Don’t Assume It’s Depression| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2292451/| pmc =2292451| journal = Primary Care Companion to The Journal of Clinical Psychiatry | volume = 10 | issue = 2 | page = 120–128| date = 2008 | pmid = 18458765 | doi = 10.4088/pcc.v10n0206 }}</ref><ref name="Hawk, 2006">{{Cite journal | last1 = Hawk | first1 = C | authorlink1 = | last2 = Jason | first2 = L | authorlink2 = Leonard Jason | last3 = Torres-Harding | first3 = S | authorlink3 = Susan Torres-Harding| title = Differential diagnosis of chronic fatigue syndrome and major depressive disorder | journal = International Journal of Behavioral Medicine | volume = 13 | issue = 3 | page = 244-51 | date = 2006 | pmid = 17078775 | doi = 10.1207/s15327558ijbm1303_8
| url = http://www.healthrising.org/wp-content/uploads/2014/04/Hawk.-Jason.-Differential-Diagnosis-of-Chronic-Fatigue-Syndrome-and-Major-Depressive-Disorder.pdf }}</ref><ref 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 | authorlink = Sarah Myhill|website=DrMyhill|language=en|access-date=2018-08-23}}</ref>

'''Research'''
* 2015, [[Institute of Medicine report]] (IOM Report)

* 2016, [http://www.tandfonline.com/doi/full/10.1080/21641846.2016.1160598 The biological challenge of myalgic encephalomyelitis/chronic fatigue syndrome: a solvable problem]<ref name="Edwards2016">{{Cite journal | last1 = Edwards | first1 = JCW | authorlink1 = Jonathan Edwards | last2 = McGrath | first2 = S | authorlink2 = Simon McGrath | last3 = Baldwin | first3 = A | authorlink3 = Adrian Baldwin | last4 = Livingstone | first4 = M | authorlink4 = Mark Livingstone | last5 = Kewley | first5 = A | authorlink5 = Andrew Kewley | title = The biological challenge of myalgic encephalomyelitis/chronic fatigue syndrome: a solvable problem | journal = Fatigue: Biomedicine, Health & Behavior | volume = 4 | issue = 2 | pages = 63–69 | date = 2016-04-02 | doi = 10.1080/21641846.2016.1160598 | url = http://www.tandfonline.com/doi/full/10.1080/21641846.2016.1160598}}</ref>
*2018, The CDC based it's updated [https://www.cdc.gov/me-cfs/index.html ME/CFS page] based on the IOM Report.
*[[Notable studies]]
'''Articles and blogs'''
* Feb 21, 2019 [https://www.rcseng.ac.uk/news-and-events/blog/differential-diagnosis-me/ Are surgeons missing the major differential diagnosis that is more common than multiple sclerosis and HIV combined?]<ref>{{Cite web|url=https://www.rcseng.ac.uk/news-and-events/blog/differential-diagnosis-me/ | title = Are surgeons missing the major differential diagnosis that is more common than multiple sclerosis and HIV combined? | last = Muirhead | first=Nina | authorlink=Nina Muirhead | date = Feb 21, 2019 | website = Royal College of Surgeons|language=en|archive-url=|archive-date=|access-date=2019-02-22}}</ref>

==References==
<references>
<ref name="viroblogMECFS">{{Cite web | title = List of ME/CFS articles published at Virology Blog| url = http://www.virology.ws/mecfs/ }}</ref>
</references>
[[Category:Primers]]

Prevalence of myalgic encephalomyelitis and chronic fatigue syndrome

2023-12-07T09:15:46Z

Anonymous990:/* Notable studies */ add systematic review

The '''prevalence of myalgic encephalomyelitis and chronic fatigue syndrome''' is estimated at 17-24 million worldwide.<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> In 2015, the [[Institute of Medicine report|Institute of Medicine (IOM) Report]] from the [[United States]] National Academy of Sciences estimated there were between 836,000 and 2.5 million [[ME/CFS]] patients in the U.S.<ref>{{Cite web|url=https://www.nap.edu/resource/19012/MECFS_ReportBrief.pdf | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining and Illness - Report Brief | last = | first = | author-link =| date = 2015 | website = nataionalacademies.org|archive-url=|archive-date=|url-status=|access-date=}}</ref> A 2018 study based on insurance claims gave "a rough estimate for the number of patients who may be diagnosed with ME or CFS in the U.S." as between 1.7 million and 3.38 million.<ref name=":0" /> Via a machine learning model, the same study predicted the prevalence of ME in the U.S. as roughly 2.8 million (857 out of every 100,000 people).<ref name=":0" />

The IOM Report estimated that between 84% and 91% of patients are not diagnosed.<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><ref>{{Cite web|url=https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts | last = | first = | author-link =| date = 2015 | website = nationalacademies.org|publisher=National Academies of Medicine|archive-url=|archive-date=|url-status=|access-date=}}</ref>

==Prevalence of ME/CFS==

{| class="wikitable sortable"
! Country
! Prevalence
! Population %
! Comments
|-
| Worldwide || 17,000,000 || ||
|-
| [[Australia]] || 100,000 || ||
|-
| [[Canada]] || 561,000 || 1.9% ||
|-
| [[Germany]] || 300,000 || 0.37% ||
|-
| [[Japan]] || 300,000 || ||
|-
| [[New Zealand]] || 20,000 || 0.45% ||
|-
| [[Nigeria]] || || 0.68% ||
|-
| England and Wales || 250,000 || 0.4% ||
|-
| [[United States]] || 1,000,000 || 0.3% ||
|}

==Notable studies==
*2011, [[chronic fatigue syndrome|CFS]] Prevalence and Risk Factors Over Time<ref>Jason, L. A., Porter, N., Hunnell, J., Rademaker, A., & Richman, J.A. (2011). CFS Prevalence and Risk Factors Over Time. Journal of Health Psychology, 16(3), 445–456. http://doi.org/10.1177/1359105310383603</ref> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3166209/ (Full Text)]
*2015, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness<ref name=":4">{{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 | last = | first = | date = 2015 | website = National Academies|archive-url=|archive-date=|url-status=|access-date=}}</ref> ([http://iom.nationalacademies.org/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf Full Text])
*2018, Prevalence and incidence of myalgic encephalomyelitis/chronic fatigue syndrome in Europe-the Euro-epiME study from the European network EUROMENE: a protocol for a systematic review.<ref>{{Cite journal | last = Murovska | first = Modra | last2 = Lacerda | first2 = Eliana | last3 = Sekulic | first3 = Slobodan | last4 = Capelli | first4 = Enrica | last5 = Lorusso | first5 = Lorenzo | last6 = Shikova | first6 = Evelina | last7 = Scheibenbogen | first7 = Carmen | last8 = Alegre | first8 = Jose | last9 = Pheby | first9 = Derek | date = 2018-09-01 | title = Prevalence and incidence of myalgic encephalomyelitis/chronic fatigue syndrome in Europe—the Euro-epiME study from the European network EUROMENE: a protocol for a systematic review | url =https://bmjopen.bmj.com/content/8/9/e020817|journal=BMJ Open|language=en|volume=8|issue=9| pages = e020817|doi=10.1136/bmjopen-2017-020817|issn=2044-6055|pmid=30181183}}</ref> ([https://bmjopen.bmj.com/content/8/9/e020817.full Full text])
*2018, Estimating Prevalence, Demographics, and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning<ref name=":0">{{Cite journal | last = Valdez | first = Ashley R. | author-link = Ashley Valdez | last2 = Hancock | first2 = Elizabeth E. | authorlink2 = Elizabeth Hancock | last3 = Adebayo | first3 = Seyi | authorlink3 = Seyi Adebayo | last4 = Kiernicki | first4 = David J. | authorlink4 = David Kiernicki | last5 = Proskauer | first5 = Daniel | authorlink5 = Daniel Proskauer | last6 = Attewell | first6 = John R. | authorlink6 = John Attewell | last7 = Bateman | first7 = Lucinda | authorlink7 = Lucinda Bateman | last8 = DeMaria | first8 = Alfred | authorlink8 = Alfred DeMaria | last9 = Lapp | first9 = Charles W. | authorlink9 = Charles Lapp | last10 = Rowe | first10 = Peter C. | authorlink10 = Peter Rowe | last11 = Proskauer | first11 = Charmian | authorlink11 = Charmaine Proskauer | date = 2019-01-08 | title = Estimating Prevalence, Demographics, and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning | url =https://www.frontiersin.org/article/10.3389/fped.2018.00412/full|journal=Frontiers in Pediatrics|volume=6|issue=|pages=|doi=10.3389/fped.2018.00412|issn=2296-2360|quote=|via=}}</ref> ([https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6331450/ Full text])
*2020, Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)<ref name="pmid32093722">{{cite journal |vauthors=Lim EJ, Ahn YC, Jang ES, Lee SW, Lee SH, Son CG |title=Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) |journal=Journal of Translational Medicine |volume=18 |issue=1 |pages=100 |date=February 2020 |pmid=32093722 |pmc=7038594 |doi=10.1186/s12967-020-02269-0 |url=}}</ref>

== See also ==
* [[Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome|Epidemiology]]
* [[Onset of ME/CFS|Onset]]
* [[Pediatric myalgic encephalomyelitis and chronic fatigue syndrome|Pediatric]]
* [[Prognosis for myalgic encephalomyelitis and chronic fatigue syndrome|Prognosis]]
* [[Eightfold increase in ME/CFS incidence in the 1980s]]

== References ==
{{Reflist}}

[[Category:Core topics]]

Prevalence of myalgic encephalomyelitis and chronic fatigue syndrome

2023-11-26T09:18:47Z

Anonymous990:/* Prevalence of ME/CFS */ NICE numbers are for England and Wales, not Ernie UK

The '''prevalence of myalgic encephalomyelitis and chronic fatigue syndrome''' is estimated at 17-24 million worldwide.<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> In 2015, the [[Institute of Medicine report|Institute of Medicine (IOM) Report]] from the [[United States]] National Academy of Sciences estimated there were between 836,000 and 2.5 million [[ME/CFS]] patients in the U.S.<ref>{{Cite web|url=https://www.nap.edu/resource/19012/MECFS_ReportBrief.pdf | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining and Illness - Report Brief | last = | first = | author-link =| date = 2015 | website = nataionalacademies.org|archive-url=|archive-date=|url-status=|access-date=}}</ref> A 2018 study based on insurance claims gave "a rough estimate for the number of patients who may be diagnosed with ME or CFS in the U.S." as between 1.7 million and 3.38 million.<ref name=":0" /> Via a machine learning model, the same study predicted the prevalence of ME in the U.S. as roughly 2.8 million (857 out of every 100,000 people).<ref name=":0" />

The IOM Report estimated that between 84% and 91% of patients are not diagnosed.<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><ref>{{Cite web|url=https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts | last = | first = | author-link =| date = 2015 | website = nationalacademies.org|publisher=National Academies of Medicine|archive-url=|archive-date=|url-status=|access-date=}}</ref>

==Prevalence of ME/CFS==

{| class="wikitable sortable"
! Country
! Prevalence
! Population %
! Comments
|-
| Worldwide || 17,000,000 || ||
|-
| [[Australia]] || 100,000 || ||
|-
| [[Canada]] || 561,000 || 1.9% ||
|-
| [[Germany]] || 300,000 || 0.37% ||
|-
| [[Japan]] || 300,000 || ||
|-
| [[New Zealand]] || 20,000 || 0.45% ||
|-
| [[Nigeria]] || || 0.68% ||
|-
| England and Wales || 250,000 || 0.4% ||
|-
| [[United States]] || 1,000,000 || 0.3% ||
|}

==TVNotable studies==
*2011, [[chronic fatigue syndrome|CFS]] Prevalence and Risk Factors Over Time<ref>Jason, L. A., Porter, N., Hunnell, J., Rademaker, A., & Richman, J.A. (2011). CFS Prevalence and Risk Factors Over Time. Journal of Health Psychology, 16(3), 445–456. http://doi.org/10.1177/1359105310383603</ref> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3166209/ (Full Text)]
*2015, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness<ref name=":4">{{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 | last = | first = | date = 2015 | website = National Academies|archive-url=|archive-date=|url-status=|access-date=}}</ref> ([http://iom.nationalacademies.org/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf Full Text])
*2018, Prevalence and incidence of myalgic encephalomyelitis/chronic fatigue syndrome in Europe-the Euro-epiME study from the European network EUROMENE: a protocol for a systematic review.<ref>{{Cite journal | last = Murovska | first = Modra | last2 = Lacerda | first2 = Eliana | last3 = Sekulic | first3 = Slobodan | last4 = Capelli | first4 = Enrica | last5 = Lorusso | first5 = Lorenzo | last6 = Shikova | first6 = Evelina | last7 = Scheibenbogen | first7 = Carmen | last8 = Alegre | first8 = Jose | last9 = Pheby | first9 = Derek | date = 2018-09-01 | title = Prevalence and incidence of myalgic encephalomyelitis/chronic fatigue syndrome in Europe—the Euro-epiME study from the European network EUROMENE: a protocol for a systematic review | url =https://bmjopen.bmj.com/content/8/9/e020817|journal=BMJ Open|language=en|volume=8|issue=9| pages = e020817|doi=10.1136/bmjopen-2017-020817|issn=2044-6055|pmid=30181183}}</ref> ([https://bmjopen.bmj.com/content/8/9/e020817.full Full text])
*2018, Estimating Prevalence, Demographics, and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning<ref name=":0">{{Cite journal | last = Valdez | first = Ashley R. | author-link = Ashley Valdez | last2 = Hancock | first2 = Elizabeth E. | authorlink2 = Elizabeth Hancock | last3 = Adebayo | first3 = Seyi | authorlink3 = Seyi Adebayo | last4 = Kiernicki | first4 = David J. | authorlink4 = David Kiernicki | last5 = Proskauer | first5 = Daniel | authorlink5 = Daniel Proskauer | last6 = Attewell | first6 = John R. | authorlink6 = John Attewell | last7 = Bateman | first7 = Lucinda | authorlink7 = Lucinda Bateman | last8 = DeMaria | first8 = Alfred | authorlink8 = Alfred DeMaria | last9 = Lapp | first9 = Charles W. | authorlink9 = Charles Lapp | last10 = Rowe | first10 = Peter C. | authorlink10 = Peter Rowe | last11 = Proskauer | first11 = Charmian | authorlink11 = Charmaine Proskauer | date = 2019-01-08 | title = Estimating Prevalence, Demographics, and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning | url =https://www.frontiersin.org/article/10.3389/fped.2018.00412/full|journal=Frontiers in Pediatrics|volume=6|issue=|pages=|doi=10.3389/fped.2018.00412|issn=2296-2360|quote=|via=}}</ref> ([https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6331450/ Full text])

== See also ==
* [[Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome|Epidemiology]]
* [[Onset of ME/CFS|Onset]]
* [[Pediatric myalgic encephalomyelitis and chronic fatigue syndrome|Pediatric]]
* [[Prognosis for myalgic encephalomyelitis and chronic fatigue syndrome|Prognosis]]
* [[Eightfold increase in ME/CFS incidence in the 1980s]]

== References ==
{{Reflist}}

[[Category:Core topics]]

Derek Enlander

2023-11-10T17:21:00Z

Anonymous990:/* Learn more */ Wikipedia article was deleted as promotional

[[File:Dr. Derek Enlander.png| right|Source: Google images/ irishcentral.com]]
'''Derek Enlander''', MD, is an Internist specializing in [[ME/CFS]], [[fibromyalgia]], and [[Lyme disease]]. Though originally from Belfast in Northern Ireland (UK), he now works in New York City, New York, United States. He is a clinical instructor at The Icahn School of Medicine at Mount Sinai and leads the [[Chronic fatigue syndrome|CFS]] Center at [[Mount Sinai Hospital]] in New York City. Committed to introducing the next generation of doctors to the best training in [[ME/CFS]], he frequently has medical students and interns shadow him in his office.

==Advocacy==
Two [[open letter to the Lancet | open letters to the editor of ''The Lancet'']] urged the editor to commission a fully independent review of the [[PACE trial]], which the journal had published in 2011. In 2016, Dr. Enlander, along with 41 colleagues in the [[ME/CFS]] field, signed the second letter.
*10 February 2016, [http://www.virology.ws/2016/02/10/open-letter-lancet-again/ An open letter to The Lancet, again - Virology blog]

==Clinic location==
:1035 Fifth Ave, New York City, New York, US
:(212) 794-2000
:He frequently visits Belfast, Dublin and England in order to see patients in all these locations.

====Talks and interviews====
*2011, [https://www.youtube.com/watch?v=I27sxpmCtrI MECFS Alert Episode 1 Part 1 - Welcome to MECFS Alert]
*2011, [https://www.youtube.com/watch?v=Vf-mxzNhovY MECFS Alert Episode 1 Part 2 - Interview with Dr. Derek Enlander]
*Oct 2015, [https://www.youtube.com/watch?v=8K8_sIlT7Ms Second Opinion TV Show - Chronic Fatigue Syndrome]
*2016, [https://www.youtube.com/watch?v=tVU8V4OWbVY&feature=em-uploademail MECFS Alert Episode 77 - Dr. Derek Enlander]

There are more talks by Doctor Enlander on YouTube.<ref>[https://www.youtube.com/results?search_query=%22derek+enlander%22 Youtube - Derek Enlander]</ref>

==Notable studies==
*2008, Gene Expression Subtypes in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis<ref name="Kerr, 2008" /> - [https://academic.oup.com/jid/article/197/8/1171/903299 (Full Text)]
*2010, Antibody to [[parvovirus B19]] nonstructural protein is associated with chronic [[arthralgia]] in patients with chronic fatigue syndrome/myalgic encephalomyelitis<ref>{{Cite journal | last = Kerr | first = J.R. | authorlink = Jonathan Kerr | last2 = Gough | first2 = J. | authorlink2 = | last3 = Richards | first3= S.C.M. | author-link3 = | last4 = Main | first4 = J. | author-link4 = | last5 = Enlander | first5 =D. | author-link5 = Derek Enlander | last6 = McCreary | first6 = M. | author-link6 = | last7 = Komaroff | first7 = A.L. | author-link7 = Anthony Komaroff | last8 = Chia | first8 = J.K. | author-link8 = John Chia | date = 2010-04-01 | title = Antibody to parvovirus B19 nonstructural protein is associated with chronic arthralgia in patients with chronic fatigue syndrome/myalgic encephalomyelitis |url =http://jgv.microbiologyresearch.org/content/journal/jgv/10.1099/vir.0.017590-0|journal=Journal of General Virology|language=en|volume=91|issue=4 | pages = 893–897|doi=10.1099/vir.0.017590-0|issn=0022-1317|quote=|via=}}</ref> - [http://jgv.microbiologyresearch.org/content/journal/jgv/10.1099/vir.0.017590-0#tab2 (Full Text)]

==Online presence==
*[https://www.facebook.com/DrEnlander/ Facebook page for Dr. Enlander's M.E. and CFS Center at Mt. Sinai]
*[http://www.ncbi.nlm.nih.gov/pubmed/?term=enlander+d%5BAuthor%5D PubMed - Derek Enlander]

==Learn more==
*[https://m.facebook.com/story.php?story_fbid=1080750148618239&id=523866227639970 Comment on Institute of Medicine report] (19 February 2015, see also [[Institute of Medicine report]])
*[https://readmeukevents.wordpress.com/2008/03/20/dr-derek-enlander-md-writes-to-dhhs-cfs-advisory-committee/ Letter to] [[U.S. Department of Health and Human Services]] CFS Advisory Committee ([[CFSAC]]).

==See also==
*[[Mount Sinai Hospital]]

==References==
<references>
<ref name="Kerr, 2008">{{Citation | last1 = Kerr | first1 = Jonathan R | author-link1 = Jonathan Kerr | last2 = Petty | first2 = Robert | authorlink2 = | last3 = Burke | first3 = Beverley | authorlink3 = | last4 = Gough | first4 = John | authorlink4 = | last5 =Fear | first5 = David | author-link5 = | last6 = Sinclair | first6 = Lindsey I | author-link6 = | last7 = Mattey | first7 = Derek L | author-link7 = | last8 =Richards | first8 = Selwyn C | author-link8 = | last9 =Montgomery | first9 = Jane| author-link9 = | last10 = Baldwin | first10 = Don A | author-link10 = | last11 = Kellam | first11 = Paul | author-link11 = | last12 = Harrison | first12 = Tim J | author-link12 = | last13 = Griffin | first13 = George E | author-link13 = | last14 = Main | first14 = Janice| author-link14 = | last15 = Enlander | first15 = Derek | author-link15 = Derek Enlander | last16 = Nutt | first16 = David J | author-link16 = | last17 = Holgate | first17 = Stephen T | author-link17 = Stephen Holgate | title = Gene Expression Subtypes in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis | journal = The Journal of Infectious Diseases | volume = 197 | issue = 8 | page = 1171–1184 | date = 15 April 2008 | pmid = | doi = 10.1086/533453 }}</ref>
</references>

[[Category:Researchers]]
[[Category:US researchers]]
[[Category:Clinicians]]
[[Category:American clinicians]]
[[Category:New York clinicians]]
[[Category:Psychological paradigm critics]]
[[Category:PACE trial critics]]

Melvin Ramsay

2023-11-05T11:32:56Z

Anonymous990:the cited source says 1986

[[File:Melvin ramsay.png|upright|right]]
Doctor '''A. Melvin Ramsay''' was consultant physician in Infectious Diseases at the [[Royal Free Hospital]] in London, United Kingdom, where an [[Royal Free Hospital outbreak|outbreak]] of [[ME/CFS|myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)]] occurred in 1955. He is considered the foremost expert on the [[Royal Free Hospital outbreak|outbreak]] and later examined similar [[List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks|outbreaks]] occurring in other cities and countries. In 1986, Dr. Ramsay published a case definition of the illness called the [[Ramsay definition]].<ref>[[Myalgic Encephalomyelitis and Postviral Fatigue States: The Saga of Royal Free Disease]]</ref> Throughout his life, he was committed to public and professional education about the illness and to dispelling misconceptions that the illness was of psychological origin.

==Books==
*1986 - ''[[Myalgic Encephalomyelitis and Postviral Fatigue States: The Saga of Royal Free Disease]]'', (originally titled ''Postviral Fatigue Syndrome: The Saga of Royal Free Disease''

==Journal publications==
*1965, Correspondence - Hysteria and "Royal Free Disease" by Melvin Ramsay, in [[The BMJ]] [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1847119/?page=1 (Full Text)]
*1965, Correspondence - Eclipse of hysteria by Dr Betty Scott and Melvin Ramsay, in [[The BMJ]] {[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1846496/?page=1 (Full Text)]
*1970, Correspondence - Epidemic malaise by N. D. Compston, H. E. Dimsdale, Melvin Ramsay, and A. T. Richardson, in [[The BMJ]] [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1699022/?page=1 (Full Text)]
*1973, Benign myalgic encephalomyelitis<ref>Ramsay AM. Benign myalgic encephalomyelitis. Br J Psychiatry. 1973 May;122(570):618-9.</ref> [https://www.ncbi.nlm.nih.gov/pubmed/4717041 (No abstract available)]
*1977, Letter to the editor - Icelandic disease (benign myalgic encephalomyelitis or Royal Free disease) by Melvin Ramsay, [[Elizabeth Dowsett]], J V Dadswell, W H Lyle, and [[Gordon Parish|J G Parish]], in [[The BMJ]] [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1607215/?page=1 (Full Text)]
*1978, 'Epidemic neuromyasthenia' 1955-1978 [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2425324/ (Full Text)]
*1979, Clinical and biochemical findings in ten patients with benign myalgic encephalomyelitis<ref>Ramsay, A.M., & Rundle, A. (1979). Clinical and biochemical findings in ten patients with benign myalgic encephalomyelitis. Postgraduate Medical Journal, 55(650), 856–857.</ref> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2425703/ (Full Text)]
*1990, Myalgic encephalomyelitis--a persistent enteroviral infection?<ref>Dowsett, E. G., Ramsay, A.M., McCartney, R. A., & Bell, E. J. (1990). Myalgic encephalomyelitis--a persistent enteroviral infection? Postgraduate Medical Journal, 66(777), 526–530.</ref> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2429637/ (Free Text)]

==ME Association==
Dr. Ramsay helped create the [[ME Association]] in 1978.<ref>[https://meassociation.org.uk/research/ ME Association research. Accessed 28-10-2023]</ref>

==Online presence==
*[http://www.ncbi.nlm.nih.gov/pubmed/?term=Ramsay%20M%5BAuthor%5D&cauthor=true&cauthor_uid=6913030 PubMed]

==Learn more==
*[http://www.name-us.org/DefintionsPages/DefRamsay.htm Ramsay's Definition for M.E.], by National Alliance for Myalgic Encephalomyelitis (NAME)

==See also==
*[[Royal Free Hospital outbreak]]
*[[Royal Free Hospital]]
*[[ME Association]]
*[[Myalgic Encephalomyelitis and Postviral Fatigue States: The Saga of Royal Free Disease]]
*[[Ramsay definition]]
*[[Ramsay's Disease]]

==References==
{{Reflist}}

[[Category:Clinicians]]
[[Category:British clinicians]]
[[Category:Researchers]]
[[Category:UK researchers]]
[[Category:Authors]]

Ramsay definition

2023-10-30T13:19:52Z

Anonymous990:fix truly

The '''Ramsay definition''' was published by Dr. [[Melvin Ramsay]] in the book ''Myalgic Encephalomyelitis and Postviral Fatigue States: The saga of Royal Free disease''.<ref>[http://www.cfids-me.org/ramsay86.html The Clinical Features of Myalgic Encephalomyelitis Melvin Ramsay, M.D., 1986 - CFIDS-me.org - Credit]</ref> Dr. Ramsay was describing the symptoms of [[Myalgic Encephalomyelitis]] (ME) from the [[1955 Royal Free Hospital outbreak]]. The 1986 definition is outlined below. The 1988 definition is better organized and less cumbersome.<ref>[https://web.archive.org/web/20120622021714/http://www.meactionuk.org.uk/definition.html Ramsay's Definition (formalised 1988) - MeactionUK]</ref>

==Authors==
*[[Melvin Ramsay]]

==Definition==
The following headings ''Disease in chronic state'' and ''Onset of the Disease'' and ''Credit'' are verbatim information provided by [[CFIDS Association of America]] on their page [http://www.cfids-me.org/ramsay86.html ''The Clinical Features of Myalgic Encephalomyelitis Melvin Ramsay, M.D., 1986''].

=== Disease in chronic state ===
Once the syndrome is fully established the patient presents a multiplicity of symptoms which can most conveniently be described in three groups.

#Muscle phenomena

:::*[Fatiguability]: Muscle fatigability, whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored and constitutes the sheet anchor of diagnosis. Without it I would be unwilling to diagnose a patient as suffering from ME, but it is most important to stress the fact that cases of ME or mild or even moderate severity may have normal muscle power in a remission. In such cases, tests for muscle power should be repeated after exercise.

:::*[Pain:] In severe cases of ME, muscle spasms and twitchings are a prominent feature and give rise to swollen bands of tissue which are acutely tender. In less severe cases, muscle tenderness may not be so readily elicited but careful palpation of the trapezii and gastrocnemii (the muscle groups most commonly involved) with the tip of the forefinger should enable the examiner to detect minute foci or exquisite tenderness.

:::*[Clumsiness:] In the aftermath of the disease patients frequently fumble with relatively simple manoevres such as turning a key in a lock or taking the cork of a bottle.

*Circulatory impairment. Most cases of ME complain of

::*Cold extremities and
::*Hypersensitivity to climactic change . . .
::*Ashen-grey facial pallor, some twenty or thirty minutes before the Patient complains of feeling ill

*Cerebral dysfunction

:*The cardinal features:

::*Impairment of memory
::*Impairment of powers of concentration and
::*Emotional lability

*[Other] common deviations from normal cerebral function:

::*Failure to recall recent or past events,
::*Difficulty in completing a line of thought . . .
::*Becoming tongue-tied in the middle of a sentence, and a
::*Strong inclination to use wrong words, saying door when they mean table or hot when they mean cold . . .
::*Complete inability to comprehend a paragraph even after re-reading it
::*Bouts of uncontrollable weeping . . .
::*Alterations of sleep rhythm or vivid dreams, or both . . .

[Accompanying] features [that] can only be attributed to involvement of the Autonomic nervous system:

:::*Frequency of micturition (urination)
:::*Hyperacusis (hypersensitivity to noise)
:::*Episodic sweating
:::*Orthostatic tachycardia . . .

Variability and fluctuation of both symptoms and physical findings in the course of a day is a constant feature in the clinical picture of myalgic encephalomyelitis.

An alarming tendency to become chronic. [Added in the 2nd edition, 1988]<ref>[http://www.cfids-me.org/ramsay86.html#chronic The Clinical Features of Myalgic Encephalomyelitis Melvin Ramsay, M.D., 1986 - Disease in the chronic state - CFIDS-me.org]</ref>

=== Onset of the disease ===
The onset of the disease is similar to those described in the various recorded outbreaks. Thus it may be sudden and without apparent cause, as in cases where the first intimation of illness is an alarming attack of acute vertigo, but usually there is a history of infection of the upper respiratory tract or, occasionally, the gastrointestinal tract with nausea and/or vomiting.

Instead of an uneventful recovery the patient is dogged by:

::*Persistent and profound fatigue accompanied by a medley of symptoms such as
::*Headache
::*Giddiness
::*Muscle pain, cramps, or twitchings
::*Muscle tenderness and weakness
::*Paraesthesiae [numbness or tingling in the extremeties]
::*Frequency of micturition [urination]
::*Blurred vision and/or diplopia [double vision]
::*Hyperacusis [sensitivity to noise sometimes alternating with deafness or normal hearing]
::*Tinnitus [constant sound in the ears], and a
::*General sense of feeling awful.

:Some patients report the occurrence of fainting attacks relieved by a small meal or just eating a biscuit; these attacks were the result of hypoglycaemia

:All cases run a low-grade pyrexia (fever), seldom exceeding 100°F (c. 38°C) and usually subsiding within a week.

:A very thorough examination of the central nervous system should be made and this should be accompanied by a careful estimation of muscle power, especially in the limbs and neck. A search for enlarged lymph nodes should never be omitted. If muscle power is found to be satisfactory, a re-examination should be made after exercise; a walk of half a mile is sufficient, as very few ME cases can make more.<ref>[http://www.cfids-me.org/ramsay86.html#onset The Clinical Features of Myalgic Encephalomyelitis Melvin Ramsay, M.D., 1986 - Onset of the Disease - CFIDS-me.org]</ref>

=== Credit ===
[A. Melvin Ramsay, M.A., M.D. Myalgic Encephalomyelitis and Postviral Fatigue States: The saga of Royal Free disease (London, 1st ed. 1986, 2nd ed. 1988). Ramsay died in 1990. Thanks to Connie Nelson of the UK for making this available to me.]<ref>[http://www.cfids-me.org/ramsay86.html The Clinical Features of Myalgic Encephalomyelitis Melvin Ramsay, M.D., 1986 - Credit]</ref>

==Criticism==
Although the symptoms are accurate for the disease Myalgic Encephalomyelitis (ME) (specifically the [[Epidemic myalgic encephalomyelitis|outbreak]] at the [[Royal Free Hospital]] in 1955), it is a difficult criterion to use by a clinician and many specialists may be needed for a diagnosis for groups of symptoms.

==Learn more==
*[http://www.cfids-me.org/ramsay86.html CFIDS-ME.org - Ramsay Definition 1986]
*[http://www.name-us.org/defintionspages/deframsay.htm National Alliance for Myalgic Encephalomyelitis - Ramsay's Definition for M.E.]
*[http://www.meactionuk.org.uk/definition.html ME Action UK - Ramsay's Definition (formalised 1988)]

==See also==
*[[Melvin Ramsay]]
*[[Royal Free Hospital]]
*[[Royal Free Hospital outbreak]]

==References==
{{Reflist}}

[[Category:Definitions]]