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===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 pooled into her legs]]. Previously, two common treatment recommendations for ME/CFS were [[graded exercise therapy]] (GET) and [[cognitive behavioral therapy]] (CBT). These treatments are based on disproven the hypothesis that the disease 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 proposed unhelpful thoughts that result in avoidance of activity and reconditioning through a gradual increase in exercise. These treatments are controversial and are at odds with much of the research literature, which suggests 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" /> which is consistent with other patient surveys and many research findings.<ref name="Phoenix20160222Norway2012" /><ref name="OxfordBrookesSurvey">{{Cite web|url = https://www.meassociation.org.uk/wp-content/uploads/NICE-Patient-Survey-Outcomes-CBT-and-GET-Final-Consolidated-Report-03.04.19.pdf| title = Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes. FINAL REPORT | last = Oxford Clinical Allied Technology and Trials Services Unit (OxCATTS)|location=Oxford Brookes University | date = Feb 27, 2019}}</ref> 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>{{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> From 2015 to present day, the study was the subject of a series of investigative pieces that were highly critical of the trial by journalist Dr. [[David Tuller]]<ref name="viroblogMECFS" />, science writer [[Julie Rehmeyer]], patient advocate [[Tom Kindlon]], Dr. [[Keith Geraghty]]<ref name="Geraghty, 2017">{{Cite journal | last1 = Geraghty | first1 = Keith | authorlink1 = Keith Geraghty| title = Further Commentary on the PACE Trial: Biased Methods and Unreliable Outcomes| journal = Journal of Health Psychology | volume = | issue = | page = | date = May 2017 | doi = 10.1177/1359105317714486}}</ref>, psychologist [[Carolyn Wilshire]]<ref name="Wilshire C, et al, 2017">{{Cite journal | last1 = Wilshire | first1 = C | authorlink1 = Carolyn Wilshire | last2 = Kindlon | first2 = T | authorlink2 = Tom Kindlon | last3 = McGrath | first3 = S | authorlink3 = Simon McGrath | title = PACE trial claims of recovery are not justified by the data: a rejoinder to Sharpe, Chalder, Johnson, Goldsmith and White | journal = Fatigue: Biomedicine, Health & Behavior | volume = 5 | issue = 1 | page = 62-67 | date = 2017 | doi = 10.1080/21641846.2017.1259724}}</ref> and others. A petition signed by almost 12,000 ME/CFS patients and allies,<ref name="MEACTIONpacepetition" /> 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 reanalysed. 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" /> 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 controls, 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 | pages = 007 | date = Jul 11, 2015 | url = http://www.jacobspublishers.com/images/Physiology/J_J_Physiology_1_2_007.pdf}}</ref>{{citation needed|reason=VanNess2010 / 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 evidence of potential for harm.<ref name="OxfordBrookesSurvey"/><ref name="ICC2011primer"/> [[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 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 [[graded exercise therapy|GET]] and how it put her in a wheelchair]]. GET and CBT have been recently abandoned in the [[United Kingdom|UK]], [[Ireland]] and many parts of Europe by ME Clinics.<ref name="niceng206">{{Cite web | url = https://www.nice.org.uk/guidance/ng206 | title = Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome:diagnosis and management. NICE guideline. | last=NICE Guideline Development Group | first = | authorlink = |publisher=[[National Institute for Health and Care Excellence]] | date = 2021-10-29}}</ref> They are highly controversial and not recommended by patients, most patient advocates, and research organizations nor by many doctors or researchers outside of the UK. Based on the flawed [[PACE trial]] which used the flawed [[Oxford criteria]] to diagnose and recruit patients, GET and CBT found its way into treating people with ME/CFS. [[Exercise]], especially GET, can harm an ME/CFS patient further.<ref name="OxfordBrookesSurvey"/> *[[Jennifer Brea]] walked home from her Neurologist's office and became [[severe and very severe ME|wheelchair-bound]]. *This is an experience of serious harm due to GET shared [https://twitter.com/TomKindlon/status/846425974052966400 by K. Miles, via Tom Kindlon on Twitter]. *[[Emma Shorter]] was able to walk a few minutes a day until GET put her in a wheelchair. *[[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 [[Causes of death|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 = Treatment {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | last = | first = | date = 2018-07-03 | website = [[Centers for Disease Control and Prevention]]|language=en-us|archive-url=|archive-date=|access-date=2021-11-22}}</ref>) when in reality they may be able to treat [[chronic fatigue]] (CF). ME/CFS patients experience an ongoing improper immune response and 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" /><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 athletes―usually amateur athletes,―diagnosed with CFS that recovered after a relatively short period of time with rest, supplementation, and diet changes,<ref name="Inews2018" /><ref name="Times2017" /><ref name="ABC2018" /><ref name="London2019" /> but they may have had [[overtraining syndrome]],<ref name="spence">{{Cite web | last = Spence | first = Vance | authorlink = Vance Spence|website=Irish M.E. Association| title = Snippets {{!}} A presentation by MERGE Chairman Dr Vance Spence on 12 November 2005 at the Oak Tree Court Conference Centre, Coventry, at the invitation of the Warwickshire Network for ME|url = https://www.imet.ie/imet_website/snippets/7th_december_2005_snippets.html|quote=(Mommersteeg et al, 2005) shows that the "burnout" experienced by athletes differs from CFS, and is certainly not ME as described in earlier literature. This is just one example of many media stories - thrown out into the public arena - which have an uncertain meaning in the context of ME/CFS}}</ref> while some people with adrenal failure, [[idiopathic chronic fatigue]] or another fatiguing illness may be erroneously diagnosed with CFS<ref name="ICC"/><ref name="recovery">{{Cite web | url = https://www.researchgate.net/profile/Diane_Cox2/publication/257764167_Severe_Chronic_Fatigue_Syndrome_CFSME_Recovery_is_possible/links/00b49525d3a11018ad000000/Severe-Chronic-Fatigue-Syndrome-CFS-ME-Recovery-is-possible.pdf | title = Severe Chronic Fatigue Syndrome: Recovery is Possible | last = Burley | first = Lucy | authorlink=Lucy Burley | last2 = Cox | first2 = Diane | authorlink2 = Diane Cox | date = Aug 1, 2007|pages=339-344|language=en|doi=10.1177/030802260707000803|archive-url=|archive-date=|url-status=|access-date=2019-02-11 | last3 = Findley | first3 = Leslie|journal=British Journal of Occupational Therapy|volume=70|issue=8 | authorlink3 = Leslie Findley}}</ref><ref name="Anoop2012">{{Cite journal | last = Devasahayam | first = Anoop | author-link = | last2 = Lawn | first2 = Tara | authorlink2 = | last3 = Murphy | first3 = Maurice | authorlink3 = | last4 = White | first4 = Peter D | authorlink4 = Peter White | date = Jan 2012 | title = Alternative Diagnoses to Chronic Fatigue Syndrome in Referrals to a Specialist Service: Service Evaluation Survey | url = https://journals.sagepub.com/doi/epub/10.1258/shorts.2011.011127|journal=JRSM Short Reports|volume=3|issue=1|pages=1–5|doi=10.1258/shorts.2011.011127|issn=2042-5333|pmc=PMC3269106|pmid=22299071|access-date=|quote=Half of all the referred patients to a specialist CFS clinic had alternative medical and psychiatric diagnoses.|via=}}</ref> ME and CFS in professional athletes normally results in very premature retirement.<ref name="Squash">{{Cite news | title = Illness robbed Marshall of crowning glory | first = Sam | last = Murley | date = Apr 10, 2019 | url = https://www.royalgazette.com/sport/article/20190410/illness-robbed-marshall-of-crowning-glory/|publisher =Royal Gazette}}</ref><ref name="Annadale">{{Cite web| title = Annadale Striders Interview - Derek Graham | url = http://annadalestriders.co.uk/derek-graham-interview/|website=Annadale Striders}}</ref><ref name="Shattered">{{Cite book |url = https://books.google.co.uk/books/about/Shattered.html?id=mkbxPAAACAAJ&redir_esc=y | title = Shattered: A Champion's Fight Against a Mystery Illness | first=Peter | last= Marshall | first2 = Nick | last2 = Kehoe | date = 2001|publisher =Mainstream}}</ref><ref name="Olympian">{{Cite news | date = May 4, 2012| title = Linley Frame: Olympian and Chronic Fatigue Syndrome sufferer|url = https://www.abc.net.au/local/audio/2012/05/04/3495770.htm|website =Australian Broadcasting Corporation}}</ref><ref name="FIFA">{{Cite web|url = http://www.fifa.com/womensworldcup/classic-players/player=michelle-akers-usa-1329785.html|archive-url=https://web.archive.org/web/20150610042710/http://www.fifa.com/womensworldcup/classic-players/player=michelle-akers-usa-1329785.html|archive-date = 2015-06-10| title = Michelle Akers USA|website=FIFA}}</ref><ref name="olaf">{{Cite news | url = https://www.welt.de/sport/gallery118782921/Benefizspiel-fuer-den-schwer-kranken-Olaf-Bodden.html | title = Benefizspiel für den schwer kranken Olaf Bodden | last = | first = | date = 2021 | website = Die Welt|archive-url=|archive-date=|url-status=|access-date=2021-11-17}}</ref><ref name="LA">{{Cite news | title = Garton enjoying life after United in LA | first = Andy | last = Mitten | date = Jul 24, 2014 | url = https://www.manchestereveningnews.co.uk/sport/football/football-news/andy-mitten-billy-garton-enjoying-7508558.amp|website =Manchester Evening News}}</ref>
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