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Myalgic encephalomyelitis/chronic fatigue syndrome: Difference between revisions

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The illness can improve or worsen over time, but full recovery is uncommon.<ref name="Bateman-2021">{{cite journal |vauthors=Bateman L, Bested AC, Bonilla HF, Chheda BV, Chu L, Curtin JM, Dempsey TT, Dimmock ME, Dowell TG, Felsenstein D, Kaufman DL, Klimas NG, Komaroff AL, Lapp CW, Levine SM, Montoya JG, Natelson BH, Peterson DL, Podell RN, Rey IR, Ruhoy IS, Vera-Nunez MA, Yellman BP |date=November 2021 |title=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management |journal=Mayo Clinic Proceedings |volume=96 |issue=11 |pages=2861–2878 |doi=10.1016/j.mayocp.2021.07.004 |pmid=34454716 |s2cid=237419583 |doi-access=free |title-link=doi}}</ref> Treatment is aimed at relieving symptoms, as no therapies or medications are approved to treat the condition.<ref name="NICE2021" />{{Rp|pages=29}} [[Pacing (activity management)|Pacing one's activities]] can help avoid flare-ups and counselling may help in coping with the illness.<ref name=CDC2024manage /> Before the [[COVID-19 pandemic]], ME/CFS affected roughly one in every 150 people, although estimates varied widely.<ref name="Lim2020">{{cite journal |vauthors=Lim EJ, Ahn YC, Jang ES, Lee SW, Lee SH, Son CG |date=February 2020 |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 |doi=10.1186/s12967-020-02269-0 |pmc=7038594 |pmid=32093722 |doi-access=free |title-link=doi}}</ref> However, many people with [[long COVID]] fit ME/CFS diagnostic criteria.<ref name="Davis-2023">{{cite journal |vauthors=Davis HE, McCorkell L, Vogel JM, Topol EJ |date=March 2023 |title=Long COVID: major findings, mechanisms and recommendations |journal=Nature Reviews. Microbiology |volume=21 |issue=3 |pages=133–146 |doi=10.1038/s41579-022-00846-2 |pmc=9839201 |pmid=36639608}}</ref> ME/CFS occurs more often in women than in men. It most commonly affects adults between ages 40 and 60 but can occur at other ages, including childhood.<ref name="CDCEpide2023">{{cite web |date=21 March 2023 |title=Epidemiology |url=https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/epidemiology.html |url-status=dead |archive-url=https://web.archive.org/web/20240306031847/https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/epidemiology.html |archive-date=6 March 2024 |access-date=13 April 2024 |website=[[Centers for Disease Control and Prevention]] (CDC)}}</ref>
 
ME/CFS has a large social and economic impact. About a quarter of individuals are severely affected and unable to leave their bed or home.<ref name="IQWiG-2023">{{Cite book |last=Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen (IQWiG) |url=https://www.iqwig.de/download/n21-01_me-cfs-aktueller-kenntnisstand_abschlussbericht_v1-0.pdf |title=Myalgische Enzephalomyelitis / Chronic Fatigue Syndrome (ME/CFS): Aktueller Kenntnisstand |date=17 April 2023 |publisher=Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen |language=de |trans-title=Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): current state of knowledge |issn=1864-2500 |access-date=8 November 2023 |archive-url=https://web.archive.org/web/20231102160213/https://www.iqwig.de/download/n21-01_me-cfs-aktueller-kenntnisstand_abschlussbericht_v1-0.pdf |archive-date=2 November 2023 |url-status=live}}</ref>{{Rp|3}} The disease can be socially isolating.<ref name=":0">{{Cite journal |last1=Shortland |first1=Diane |last2=Fazil |first2=Qulsom |last3=Lavis |first3=Anna |last4=Hallett |first4=Nutmeg |date=4 April 2024 |title=A systematic scoping review of how people with ME/CFS use the internet |journal=Fatigue: Biomedicine, Health & Behavior |language=en |volume=12 |issue=2 |pages=142–176 |doi=10.1080/21641846.2024.2303887 |issn=2164-1846 |doi-access=free}}</ref> People with ME/CFS often face stigma in healthcare settings and care is complicated by [[Controversies related to ME/CFS|controversies around the cause and treatments]] of the illness.<ref name="pmid32601171">{{cite journal |vauthors=O'Leary D |date=December 2020 |title=A concerning display of medical indifference: reply to 'Chronic fatigue syndrome and an illness-focused approach to care: controversy, morality and paradox' |url= |journal=Medical Humanities |volume=46 |issue=4 |pages=e4 |doi=10.1136/medhum-2019-011743 |pmid=32601171|s2cid=220253462 }}</ref> Doctors may be unfamiliar with ME/CFS, as it is often not fully covered in medical school.<ref name="Davis-2023"/> Historical research funding for ME/CFS has been far below that of diseases with comparable impact.<ref name="Tyson_2022">{{Cite journal |vauthors=Tyson S, Stanley K, Gronlund TA, Leary S, Emmans Dean M, Dransfield C, Baxter H, Elliot R, Ephgrave R, Bolton M, Barclay A, Hoyes G, Marsh B, Fleming R, Crawford J |date=2022 |title=Research priorities for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): the results of a James Lind alliance priority setting exercise |journal=Fatigue: Biomedicine, Health & Behavior |language=en |volume=10 |issue=4 |pages=200–211 |doi=10.1080/21641846.2022.2124775 |issn=2164-1846 |s2cid=252652429 |doi-access=free}}</ref>
 
== Classification ==
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The NAM report refers to ME/CFS as "stigmatized", and the majority of individuals report negative healthcare experiences.<ref name="IOM2015" />{{Rp|page=30}} They may feel that their doctor inappropriately calls their illness psychological or doubts the severity of their symptoms.<ref name="McManimen-2019">{{cite journal |vauthors=McManimen S, McClellan D, Stoothoff J, Gleason K, Jason LA |date=March 2019 |title=Dismissing chronic illness: A qualitative analysis of negative health care experiences |journal=Health Care for Women International |volume=40 |issue=3 |pages=241–258 |doi=10.1080/07399332.2018.1521811 |pmc=6567989 |pmid=30829147}}</ref> They may also feel forced to prove that they are legitimately ill.<ref name="pmid16085344">{{cite journal |vauthors=Dumit J |date=February 2006 |title=Illnesses you have to fight to get: facts as forces in uncertain, emergent illnesses |journal=Social Science & Medicine |volume=62 |issue=3 |pages=577–590 |doi=10.1016/j.socscimed.2005.06.018 |pmid=16085344}}</ref> Some may be given outdated treatments that provoke symptoms or assume their illness is due to unhelpful thoughts and deconditioning.<ref name="Bateman-2021" />{{Rp|page=2871}}<ref name="Davis-2023" />
 
Clinicians may be unfamiliar with ME/CFS, as it is often not fully covered in medical school.<ref name="Davis-2023" /> Due to this unfamiliarity, people may go undiagnosed for years<ref name="Bateman-2021" /> or be misdiagnosed with mental health conditions.<ref name="Davis-2023" /> As people with ME/CFS gain knowledge about their illness over time, their relationship with treating physicians changes. They may feel on a more equal footing with their doctors and able to work in partnership. At times, relationships may deteriorate instead as the previous asymmetry of knowledge breaks down.<ref name=":0" />
 
==Research==