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Myalgic encephalomyelitis/chronic fatigue syndrome: Difference between revisions

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{{Good article}}
{{Use British English|date=March 2024}}
{{Use dmy dates|date=FebruaryJuly 2024}}
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{{Infobox medical condition
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=== Risk factors ===
ME/CFS can affect people of all ages, ethnicities, and income levels, but it is more common in women than men.<ref name="Lim2020" /> People with a history of frequent infections are more likely to develop it.<ref name="pmid38443223" /> Those with family members who have ME/CFS are also at higher risk, suggesting a genetic factor.<ref name="Dibble McGrath Ponting 2020 p." /> In the United States, [[white Americans]] are diagnosed more frequently than other groups,<ref>{{Cite web |date=10 May 2024 |title=ME/CFS Basics |url=https://www.cdc.gov/me-cfs/about/index.html |archive-url=https://web.archive.org/web/20240523214910/https://www.cdc.gov/me-cfs/about/index.html |archive-date=23 May 2024 |access-date=2024-05-25 May 2024 |website=U.S. [[Centers for Disease Control and Prevention]] (CDC) |language=en-us}}</ref> but the illness is probably at least as prevalent among African Americans and Hispanics.<ref name="CDCEpide2023" /> It used to be thought that ME/CFS was more common among those with higher incomes. Instead, people in minority groups or lower income groups may have increased risks due to poorer nutrition, lower healthcare access, and increased work stress.<ref name="Lim2020" />
===Viral infections===
{{main|Post-acute infection syndrome}}
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People with moderate to severe ME/CFS may benefit from home adaptations and mobility aids, such as [[wheelchair]]s, disability parking, [[Transfer bench|shower chairs]], or [[stair lift]]s. To manage sensitivities to environmental stimuli, these stimuli can be limited. For instance, the surroundings can be made perfume-free, or an [[Sleep mask|eye mask]] or [[earplug]]s can be used.<ref name="BMJbest_practice3" />{{Rp|pages=39–40}} Those with severe ME/CFS may have significant trouble getting nutrition. [[Parenteral nutrition|Intravenous feeding]] (via blood) or [[Feeding tube|tube feeding]] may be necessary to address this or to address [[electrolyte imbalance]]s.<ref name="pmid37793728" />
 
Patients who cannot move easily in bed may need help to prevent [[Pressure ulcer|pressure sores]]. Regular repositioning is important to keep their joints flexible, prevent stiffness and [[Contracture|contractures]]. [[Osteoporosis]] may pose a risk over the long term.<ref>{{Cite web |date=2024-05-13 May 2024 |title=ME/CFS Clinical Care for Severely Affected Patients |url=https://www.cdc.gov/me-cfs/hcp/clinical-care/me-cfs-clinical-care-for-severely-affected-patients.html |archive-url=https://web.archive.org/web/20240528171310/https://www.cdc.gov/me-cfs/hcp/clinical-care/me-cfs-clinical-care-for-severely-affected-patients.html |archive-date=28 May 2024 |access-date=2024-06-15 June 2024 |website=[[Centers for Disease Control and Prevention]] (CDC) |url-status=live}}</ref> Symptoms of severe ME/CFS may be misunderstood as neglect or abuse during well-being evaluations, and NICE recommends that professionals with experience in ME/CFS should be involved in any type of assessment for [[safeguarding]].<ref name="NICE2021" />{{rp|22}}
 
== Prognosis ==
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An early diagnosis may improve care and prognosis.<ref name="NICE-2021-D" /> Factors that may make the disease worse over days, but also over longer time periods, are physical and mental exertion, a new infection, sleep deprivation, and emotional stress.<ref name="IQWiG-2023" />{{Rp|page=11}} Some people who improve need to manage their activities in order to prevent relapse.<ref name="CDC_Clinical2024" /> Children and teenagers are more likely to recover or improve than adults.<ref name="CDC_Clinical2024" /><ref name="NICE2021"/>{{Rp|pages=20}} For instance, a study in Australia among 6- to 18-year-olds found that two-thirds reported recovery after ten years, and that the typical duration of illness was five years.<ref name="IQWiG-2023" />{{Rp|page=11}}
 
The effect of ME/CFS on [[life expectancy]] is poorly studied, and the evidence is mixed. One large retrospective study on the topic found no increase in all-cause mortality due to ME/CFS. Death from suicide was, however, significantly higher among those with ME/CFS.<ref name="BMJbest_practice3" />{{Rp|page=59}} In extreme cases, people can die{{how|date=June 2024}} from the illness.<ref name=":1">{{Cite journal |last1=Hoffmann |first1=Kathryn |last2=Hainzl |first2=Astrid |last3=Stingl |first3=Michael |last4=Kurz |first4=Katharina |last5=Biesenbach |first5=Beate |last6=Bammer |first6=Christoph |last7=Behrends |first7=Uta |last8=Broxtermann |first8=Wolfgang |last9=Buchmayer |first9=Florian |last10=Cavini |first10=Anna Maria |last11=Fretz |first11=Gregory Sacha |last12=Gole |first12=Markus |last13=Grande |first13=Bettina |last14=Grande |first14=Tilman |last15=Habermann-Horstmeier |first15=Lotte |date=1 August 2024-08-01 |title=Interdisziplinäres, kollaboratives D-A-CH Konsensus-Statement zur Diagnostik und Behandlung von Myalgischer Enzephalomyelitis/Chronischem Fatigue-Syndrom |url=https://doi.org/10.1007/s00508-024-02372-y |journal=Wiener klinische Wochenschrift |language=de |volume=136 |issue=5 |pages=103–123 |doi=10.1007/s00508-024-02372-y |pmid=38743348 |issn=1613-7671|pmc=11093804 }}</ref>
 
== Epidemiology ==
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In England and Wales, over 250,000 people are estimated to be affected.<ref name="NICE2021" />{{Rp|pages=92}} These estimates are based on data before the [[COVID-19 pandemic]]. It is likely that numbers have increased as a large share of people with [[long COVID]] meet the diagnostic criteria of ME/CFS.<ref name="IQWiG-2023" />{{Rp|page=228|pages=}} A 2021–2022 [[National Health Interview Survey|CDC survey]] found that 1.3% of adults in the United States, or 3.3 million, had ME/CFS.<ref>{{Cite report |url=https://www.cdc.gov/nchs/products/databriefs/db488.htm |title=Myalgic encephalomyelitis/chronic fatigue syndrome in adults: United States, 2021–2022 |date=8 December 2023 |publisher=National Center for Health Statistics |issue=488 |doi=10.15620/cdc:134504 |pages=1–8 |pmid=38085820 |id=NCHS Data Brief |access-date=8 December 2023 |archive-url=https://web.archive.org/web/20240217000708/https://www.cdc.gov/nchs/products/databriefs/db488.htm |archive-date=17 February 2024 |url-status=live |doi-access=free |vauthors=Vahratian A, Lin JS, Bertolli J, Unger ER}}</ref> <!-- 2020 census US adult population: 258.3M -->
 
Women are diagnosed about 1.5 to 4 times more often with ME/CFS than men.<ref name=Lim2020/><ref name="CDCEpide2023" /> The prevalence in children and adolescents is slightly lower than in adults,<ref name="Lim2020" /> and children have it less than adolescents.<ref>{{Cite web |date=2024-05-31 May 2024 |title=Fast Facts: ME/CFS |url=https://www.cdc.gov/me-cfs/about/fast-facts-about-me-cfs.html |access-date=2024-06-15 June 2024 |website=[[Centers for Disease Control and Prevention]] (CDC) |language=en-us|archive-url=https://web.archive.org/web/20240603101152/https://www.cdc.gov/me-cfs/about/fast-facts-about-me-cfs.html|archive-date=3 June 2024}}</ref> The [[Incidence (epidemiology)|incidence]] rate has two peaks, one at 10–19 and another at 30–39 years,<ref name="pmid31379194">{{cite journal | vauthors = Collard SS, Murphy J | title = Management of chronic fatigue syndrome/myalgic encephalomyelitis in a pediatric population: A scoping review | journal = Journal of Child Health Care | volume = 24 | issue = 3 | pages = 411–431 | date = September 2020 | pmid = 31379194 | pmc = 7863118 | doi = 10.1177/1367493519864747 }}</ref> and the [[prevalence]] is highest between ages 40 and 60.<ref name="pmid28033311" /><ref name="CDCEpide2023"/>
 
== History ==
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Patient organisations have aimed to involve researchers via activism but also by publishing research themselves—similarly to [[HIV/AIDS activism|AIDS activism]] in the 1980s, which also sought to combat underfunding and stigma. [[Citizen science|Citizen scientists]], for example, helped start discussions about weaknesses in trials of psychological treatments.<ref name="pmid29971693" />
 
[[International May 12th Awareness Day|ME/CFS International Awareness Day]] takes place on May 12 May.<ref name="CDC_Awareness">{{cite web |date=10 May 2024 |title=ME/CFS Awareness Day |url=https://www.cdc.gov/me-cfs/awareness-day/ |url-status=live |archive-url=https://web.archive.org/web/20240517200059/https://www.cdc.gov/me-cfs/awareness-day/ |archive-date=17 May 2024 |access-date=17 May 2024 |website=U.S. [[Centers for Disease Control and Prevention]] (CDC) |publisher=}}</ref> The goal of the day is to raise awareness among the public and health care workers about the diagnosis and treatment of ME/CFS.<ref name="NIH_Awareness">{{cite web |title=Dr. Nancy Lee on International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day|date=12 May 2012|url=https://www.hhs.gov/advcomcfs/cfsac-cfsa-day.html |archive-url=https://web.archive.org/web/20120708024540/http://www.hhs.gov/advcomcfs/cfsac-cfsa-day.html |archive-date=8 July 2012 |access-date=12 October 2013 |publisher=US Department of Health & Human Services |vauthors=Lee N}}</ref> It was chosen because it is the birthday of [[Florence Nightingale]], who had an unidentified illness similar to ME/CFS.<ref>{{Cite web |titlename=International"CDC_Awareness" ME Awareness Day 2023 |url=https://www.meresearch.org.uk/international-me-awareness-day-2023/ |url-status=live |archive-url=https://web.archive.org/web/20240128122425/https://www.meresearch.org.uk/international-me-awareness-day-2023/ |archive-date=28 January 2024 |access-date=28 January 2024 |website=ME Research UK}}</ref>
 
=== Doctor–patient relations ===