Myalgic encephalomyelitis/chronic fatigue syndrome

Not to be confused with chronic fatigue, a symptom experienced in many chronic illnesses, including idiopathic chronic fatigue.

Myalgic encephalomyelitis/chronic fatigue syndrome
Other namesPost-viral fatigue syndrome (PVFS), systemic exertion intolerance disease (SEID)[1]: 20 
Icons of the four key ME/CFS symptoms: low battery for profound fatigue, weak muscle for post-exertional malaise, bed for sleep problems and crossed wires in brain for cognitive difficulties.
The four primary symptoms of ME/CFS according to the National Institute for Health and Care Excellence
SpecialtyRheumatology, rehabilitation medicine, endocrinology, infectious disease, neurology, immunology, general practice, paediatrics, other specialists in ME/CFS[2]: 58 
SymptomsWorsening of symptoms with activity, long-term fatigue, sleep problems, others[3]
Usual onsetPeaks at 10–19 and 30–39 years old[4]
DurationLong-term[5]
CausesUnknown[6]
Risk factorsBeing female, family history, viral infections[6]
Diagnostic methodBased on symptoms[7]
TreatmentSymptomatic[8]
PrevalenceAbout 0.17% to 0.89% (pre-COVID-19 pandemic)[9]

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling chronic illness. People with ME/CFS experience profound fatigue that does not go away with rest, sleep issues, and problems with memory or concentration. Further common symptoms include dizziness, nausea and pain.[3] The hallmark symptom is a worsening of the illness which starts hours to days after minor physical or mental activity. This "crash" can last from hours or days to several months.[10]

The cause of the disease is unknown.[11] ME/CFS often starts after an infection, such as mononucleosis.[12] It can run in families, but no genes that contribute to ME/CFS have been confirmed.[13] ME/CFS is associated with changes in the nervous and immune systems, as well as in energy production.[14] Diagnosis is based on symptoms and a differential diagnosis because no diagnostic test is available (diagnosis by exclusion).[7][15]

The illness can improve or worsen over time, but full recovery is uncommon.[12] No therapies or medications are approved to treat the condition, and management is aimed at relieving symptoms.[2]: 29  Pacing of activities can help avoid worsening symptoms, and counselling may help in coping with the illness.[8] Before the COVID-19 pandemic, ME/CFS affected 2 to 9 out of every 1000 people, depending on the definition.[9] However, many people fit ME/CFS diagnostic criteria after contracting long COVID.[16] 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.[17]

ME/CFS has a large social and economic impact, and the disease can be socially isolating.[18] About a quarter of those affected are unable to leave their bed or home.[10]: 3  People with ME/CFS often face stigma in healthcare settings, and care is complicated by controversies around the cause and treatments of the illness.[19] Doctors may be unfamiliar with ME/CFS, as it is often not fully covered in medical school.[16] Historically, research funding for ME/CFS has been far below that of diseases with comparable impact.[20]

  1. ^ Cite error: The named reference IOM2015 was invoked but never defined (see the help page).
  2. ^ a b "Myalgic Encephalomyelitis (Or Encephalopathy)/Chronic Fatigue Syndrome: Diagnosis and Management: NICE Guideline". National Institute for Health and Care Excellence (NICE). 29 October 2021. Archived from the original on 8 February 2024. Retrieved 9 March 2024.
  3. ^ a b "Symptoms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". U.S. Centers for Disease Control and Prevention (CDC). 10 May 2024. Archived from the original on 17 May 2024. Retrieved 17 May 2024.
  4. ^ Cite error: The named reference pmid31379194 was invoked but never defined (see the help page).
  5. ^ "Myalgic Encephalomyelitis (Or Encephalopathy)/Chronic Fatigue Syndrome: Diagnosis and Management: Information for the Public". National Institute for Health and Care Excellence (NICE). 29 October 2021. Archived from the original on 4 April 2024. Retrieved 24 March 2024.
  6. ^ a b Cite error: The named reference pmid37793728 was invoked but never defined (see the help page).
  7. ^ a b Cite error: The named reference pmid37226227 was invoked but never defined (see the help page).
  8. ^ a b "Manage Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". U.S. Centers for Disease Control and Prevention (CDC). 10 May 2024. Archived from the original on 18 May 2024. Retrieved 18 May 2024.
  9. ^ a b Lim EJ, Ahn YC, Jang ES, Lee SW, Lee SH, Son CG (February 2020). "Systematic Review and Meta-Analysis Of the Prevalence of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)". Journal of Translational Medicine. 18 (1): 100. doi:10.1186/s12967-020-02269-0. PMC 7038594. PMID 32093722.
  10. ^ a b Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen (IQWiG) (17 April 2023). Myalgische Enzephalomyelitis / Chronic Fatigue Syndrome (ME/CFS): Aktueller Kenntnisstand [Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): current state of knowledge] (PDF) (in German). Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen. ISSN 1864-2500. Archived (PDF) from the original on 2 November 2023. Retrieved 8 November 2023.
  11. ^ Cite error: The named reference CDC_Clinical2024 was invoked but never defined (see the help page).
  12. ^ a b Bateman L, Bested AC, Bonilla HF, Chheda BV, Chu L, Curtin JM, et al. (November 2021). "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management". Mayo Clinic Proceedings. 96 (11): 2861–2878. doi:10.1016/j.mayocp.2021.07.004. PMID 34454716. S2CID 237419583.
  13. ^ Dibble JJ, McGrath SJ, Ponting CP (September 2020). "Genetic Risk Factors of ME/CFS: A Critical Review". Human Molecular Genetics. 29 (R1): R117–R124. doi:10.1093/hmg/ddaa169. PMC 7530519. PMID 32744306.
  14. ^ Annesley SJ, Missailidis D, Heng B, Josev EK, Armstrong CW (March 2024). "Unravelling Shared Mechanisms: Insights from Recent ME/CFS Research to Illuminate Long COVID Pathologies". Trends in Molecular Medicine. 30 (5): 443–458. doi:10.1016/j.molmed.2024.02.003. PMID 38443223.
  15. ^ "Myalgic encephalomyelitis (Chronic fatigue syndrome) - Symptoms, diagnosis and treatment | BMJ Best Practice US". bestpractice.bmj.com. Retrieved 21 October 2024.
  16. ^ a b Davis HE, McCorkell L, Vogel JM, Topol EJ (March 2023). "Long COVID: Major Findings, Mechanisms and Recommendations". Nature Reviews. Microbiology. 21 (3): 133–146. doi:10.1038/s41579-022-00846-2. PMC 9839201. PMID 36639608.
  17. ^ "Epidemiology". U.S. Centers for Disease Control and Prevention (CDC). 21 March 2023. Archived from the original on 6 March 2024. Retrieved 13 April 2024.
  18. ^ Boulazreg, S, Rokach A (17 July 2020). "The Lonely, Isolating, and Alienating Implications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Healthcare. 8 (4): 413–433. doi:10.3390/healthcare8040413. ISSN 2164-1846. PMC 7711762. PMID 33092097.
  19. ^ Hussein S, Eiriksson L, MacQuarrie M, Merriam S, Dalton M, Stein E, et al. (2024). "Healthcare System Barriers Impacting the Care of Canadians with Myalgic Encephalomyelitis: A Scoping Review". Journal of Evaluation in Clinical Practice. 30 (7): 1337–1360. doi:10.1111/jep.14047. ISSN 1356-1294. PMID 39031904.
  20. ^ Tyson S, Stanley K, Gronlund TA, Leary S, Emmans Dean M, Dransfield C, et al. (2022). "Research Priorities for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): The Results of a James Lind Alliance Priority Setting Exercise". Fatigue: Biomedicine, Health & Behavior. 10 (4): 200–211. doi:10.1080/21641846.2022.2124775. ISSN 2164-1846. S2CID 252652429.