Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome

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Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome:

Statistics on the prevalence of myalgic encephalomyelitis and chronic fatigue syndrome vary. The CDC estimates that one million people in the US have ME/CFS and as many as 17-24 million people worldwide have ME/CFS.[1] A recent UK biobank study places that estimate at 30 million.[2] In 2015, the Institute of Medicine Report estimated there were between 836,000 and 2.5 million ME/CFS patients in the United States.[3][4] 90% of patients are not diagnosed.[5][4]

Twenty-five percent of ME/CFS patients have a very severe form of it.[6][7] This 25% of patients are severely ill and are either bed-bound, wheelchair bound, or are housebound or nearly so.[3]:32

ME/CFS is more prevalent in women than men, can affect children or adults but is most common in adults between the ages of 30 to 50 years old,[8] or ages 40-60 in the United States.[9] In 72% of causes reported by ME/CFS patients, the onset follows an acute infection,[10] for example a virus or bacterial infection.[8]

Incidence and Prevalence[edit | edit source]

The prevalence rate is projected at 0.2%[11][12]-0.4%[13][14] although estimates vary widely due to different definitions and sampling methods used.[15]

Estimated incidence rates – generally, the number of new cases in a single year – vary from 0.025%[16] to 0.3% of the population.

Incidence and prevalence by country[edit | edit source]

Country Incidence Prevalence rate Total number
Australia 242,000 people have CFS (of which 94,000 meet a narrower definition for ME).[17]
United Kingdom 0.015%[11] 0.03-0.19%[11] 250,000[18]
United States 836,000 to 2.5 million[3][4]
The Netherlands 0.11%[19][20] 30.000-40.000[21]

Incidence and prevalence by definition[edit | edit source]

Method 12-month incidence Prevalence rate
Postviral fatigue syndrome (ICD-10-CM G93.3 in a national health registry in Norway) 0.025%[22] (NO)
Fukuda Criteria (CDC-1994 definition) 0.19%[11] (UK), 0.24%[12] (US. Kansas), 0.42%[13] (US, Chicago),
Canadian Consensus Criteria (CCC) 0.11%[11] (UK)
Empirical definition (Reeves criteria) 2.54%[23]
Epidemiological Case Definition (ECD) 0.015%[11] (UK) 0.03%[11] (UK)
Diagnoses reported by general practitioners and pediatricians in the Netherlands (criteria unspecified) 0.012%[24] (NL, 10-18 year olds) 0.11%[24] (NL, 10-18 year olds)

Sex[edit | edit source]

Age and gender distribution of ME/CFS.[16]

Numerous studies have found the rates of ME/CFS to be substantially higher in adult women than in men, with estimates ranging from 75-85%.[13][16][25]

A higher preponderance of women has also been noted in numerous outbreaks including Los Angeles, Akureyri, Rockville, MD, Royal Free Hospital, and Punta Gorda, Florida.[26][27][28][29][30][31][32] In some cases, this was thought to do with the occupational hazard of nursing, but this female-skewed sex ratio was also found in several outbreaks among the general population. However, in other outbreaks, including the 1949-1953 Adelaide outbreak and an outbreak in northern England in 1955, a 1:1 gender ratio was reported.[26] In Akureyri, a significantly higher incidence rate was found among adult women but not in patients under twenty.[32]

Age[edit | edit source]

New cases of ME/CFS have been in children as young as eight and adults in their eighties. In terms of incidence, a study in Norway found two age peaks, one between 10 and 19 years and a second peak between 30 and 39 years.[16] In terms of prevalence, Jason found that individuals in the 40- to 49-year-old age range exhibited the highest prevalence rates of chronic fatigue syndrome (CFS).[13]

Race and ethnicity[edit | edit source]

In 1999, a community-based study by Dr Leonard Jason, et al, performed in the Chicago area found that individuals who identified as people of color exhibited higher rates of CFS than whites, with Latino participants demonstrating the highest CFS prevalence.[13]

Socioeconomic characteristics[edit | edit source]

The prevalence of CFS was highest among skilled workers and lowest among professionals.[13]

Severity[edit | edit source]

Comparison of disability for ME/CFS and other conditions. Source: Hvidberg et al 2015. PLoSOne 10(7):e0132421.[33]

People with ME/CFS are more disabled and socially marginalized than for most other chronic illnesses.[33]

Around 25 percent of people with ME/CFS will have a mild form and are able to go to school or work either part-time or full-time, while reducing other activities. About 50 percent will have a moderate to severe form of ME/CFS and are unlikely to able to study or work. Another 25 percent will experience severe ME/CFS and have to stay at home or in bed.[3]

According to the CDC, up to the 75% of United States patients with ME/CFS are too ill to work,[10] with rates of between 50 and 75% too ill to work worldwide.[34] A study in France by Ghali et al 2020 looked at factors associated with increased severity of post-exertional malaise (PEM), the hallmark symptom, and found that onset at age 32 or later, a gastrointestinal illness triggering ME/CFS and recurrent infections during the illness all increased risk of having more severe PEM.[35]

Risk factors [edit | edit source]

Genetics[edit | edit source]

Five percent of children of mothers with ME/CFS later developed the illness.[36]

Infection[edit | edit source]

Infections are a risk factor for the development of ME/CFS.[37] The vast majority of people diagnosed with ME/CFS report that their illness began after a virus or other infection, especially Epstein-Barr virus, Ross River virus and Q fever.[38][39] One study found recurrent infections since the onset of ME/CFS increased the risk of more severe post-exertional malaise.[35]

Bodily response to physical or emotional stress[edit | edit source]

An accident, physical trauma, anesthetics, or significant emotional stress have been reported by some patients prior to onset of symptoms.[37] According to the CDC, this may cause a physical response by affecting body chemistry including the HPA axis, levels of corticotrophin-releasing hormone (CRH), the stress hormone cortisol and others.[38]

Environmental factors[edit | edit source]

Mold or toxin exposure is an expected trigger although specific environmental factors with ME/CFS have not been established.[37][8]:1-2

Prognosis[edit | edit source]

The prognosis for ME/CFS is considered to be poor with only a minority (a median estimate of 5%) returning to pre-morbid levels of functioning.[40] The majority of patients remains significantly impaired. A substantial improvement however is noted in an estimated 40% of patients[40][41] and the prognosis in adolescents is considered to be better than in adults.[42][43][44]

Mortality[edit | edit source]

One study found no increased risk of all cause mortality or mortality from cancer but an increased risk of suicide. Suicide risk was increased 6.85 compared to the general population.[45] It was based on a cohort that used multiple clinical criteria, including the Oxford criteria[46] which was later recommended for retirement due to the likelihood of including patients without ME/CFS. A Spanish study found a suicide risk of 12.75% versus 2.3% in the general population.[47]

A 2006 study by Leonard Jason found that ME/CFS patients died of cancer, heart failure and suicide at considerable younger age than the general population. For example while the median age of death for cancer in the US was 72, the average age at which ME/CFS patients died of cancer was 47. And while the average age of heart failure in the general population was 83, it was only 58 in the ME/CFS sample.[48]

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. "How Many People Have ME/CFS? – American ME and CFS Society". Retrieved January 31, 2019.
  2. McGrath, Simon (June 11, 2018). "Analysis of data from 500,000 individuals in UK Biobank demonstrates an inherited component to ME/CFS". ME/CFS Research Review. Retrieved February 23, 2019.
  3. 3.0 3.1 3.2 3.3 Institute of Medicine (2015). Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi:10.17226/19012. ISBN 0309316898. PMID 25695122.
  4. 4.0 4.1 4.2 "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts" (PDF). The National Academies of Medicine. 2015. Archived from the original (PDF) on March 27, 2020.
  5. "What is ME/CFS? | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. January 18, 2019. Retrieved January 31, 2019.
  6. Fatima (January 31, 2011). "Raising Awareness". Raising Awareness for ME/CFS. Retrieved February 4, 2020.
  7. "About ME/CFS | Forgotten Plague". Retrieved February 4, 2020.
  8. 8.0 8.1 8.2 Carruthers, BM; van de Sande, MI; De Meirleir, KL; Klimas, NG; Broderick, G; Mitchell, T; Staines, D; Powles, ACP; Speight, N; Vallings, R; Bateman, L; Bell, DS; Carlo-Stella, N; Chia, J; Darragh, A; Gerken, A; Jo, D; Lewis, DP; Light, AR; Light, KC; Marshall-Gradisnik, S; McLaren-Howard, J; Mena, I; Miwa, K; Murovska, M; Stevens, SR (2012), Myalgic encephalomyelitis: Adult & Paediatric: International Consensus Primer for Medical Practitioners (PDF), ISBN 978-0-9739335-3-6
  9. "Epidemiology | Presentation and Clinical Course | Healthcare Providers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. November 8, 2018. Retrieved January 23, 2019.
  10. 10.0 10.1 Lapp, C; Unger, ER; Komaroff, AL; Nath, A . (February 2016), "CDC public health grand rounds. Chronic fatigue syndrome: advancing research and clinical education" (PDF), Centers for Disease Control and Prevention, retrieved April 3, 2020
  11. 11.0 11.1 11.2 11.3 11.4 11.5 11.6 Nacul, LC (July 2011). "Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care". BMC Medicine. 9: 91.
  12. 12.0 12.1 Reyes, Michele (July 14, 2003). "Prevalence and Incidence of Chronic Fatigue Syndrome in Wichita, Kansas". JAMA Internal Medicine. 163: 1530–1536.
  13. 13.0 13.1 13.2 13.3 13.4 13.5 Jason, LA; Richman, JA; Rademaker, AW; Jordan, KM; Plioplys, AV; Taylor, RR; McCready, W; Huang, C; Plioplys, S (1999), "A Community-Based Study of Chronic Fatigue Syndrome", Arch Intern Med, 159 (18): 2129-2137, doi:10.1001/archinte.159.18.2129
  14. "Analysis of data from 500,000 individuals in UK Biobank demonstrates an inherited component to ME/CFS". ME/CFS Research Review. June 11, 2018. Retrieved August 11, 2018.
  15. Johnston, Samantha; Brenu, Ekua W.; Staines, Donald; Marshall-Gradisnik, Sonya (2013). "The prevalence of chronic fatigue syndrome/ myalgic encephalomyelitis: a meta-analysis". Clinical Epidemiology. 5: 105–110. doi:10.2147/CLEP.S39876. ISSN 1179-1349. PMC 3616604. PMID 23576883.
  16. 16.0 16.1 16.2 16.3 Bakken, Inger Johanne; Tveito, Kari; Gunnes, Nina; Ghaderi, Sara; Stoltenberg, Camilla; Trogstad, Lill; Håberg, Siri Eldevik; Magnus, Per (October 1, 2014). "Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway 2008-2012". BMC medicine. 12: 167. doi:10.1186/s12916-014-0167-5. ISSN 1741-7015. PMC 4189623. PMID 25274261.
  17. Emerge Quarterly Journal, AUTUMN 2016 - Vol 36 - No 1, page 14, Mar 2016
  18. Working Group on CFS/ME, Department of Health (January 11, 2003). "Annex 1: Epidemiology of CFS/ME".
  19. Bazelmans E, Vercoulen J.H.M.M, Galama J.M.D, Van Weel, C, Van Der Meer J.W.M, Bleijenberg G. (1997). Prevalentie van het chronische-vermoeidheidssyndroom en het primaire-fibromyalgiesyndroom in Nederland. Nederlands Tijdschrift voor Geneeskunde; 141: 1520-1523. 
  20. Versluis R.G.J.A, De Waal M.W.M, Opmeer C, Petri H, Springer M.P. (1997). Prevalentie van het chronische-vermoeidheidssyndroom in 4 huisartspraktijken in de regio Leiden. Nederlands Tijdschrift voor Geneeskunde; 141(31): 1523-26. 
  21. Health Council of the Netherlands. ME/CFS. The Hague: Health Council of the Netherlands, 2018; publication no. 2018/07.
  22. Magnus, P (November 17, 2015). "Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is associated with pandemic influenza infection, but not with an adjuvanted pandemic influenza vaccine". Vaccine. 33: 6173–7.
  23. Reeves, William C.; Jones, James F.; Maloney, Elizabeth; Heim, Christine; Hoaglin, David C.; Boneva, Roumiana S.; Morrissey, Marjorie; Devlin, Rebecca (June 8, 2007). "Prevalence of chronic fatigue syndrome in metropolitan, urban, and rural Georgia". Population Health Metrics. 5: 5. doi:10.1186/1478-7954-5-5. ISSN 1478-7954. PMC 1904178. PMID 17559660.
  24. 24.0 24.1 Nijhof, Sanne (April 2011). "Adolescent Chronic Fatigue Syndrome: Prevalence, Incidence, and Morbidity". Pediatrics.
  25. Gunn, Walter (1993). "Epidemiology of Chronic Fatigue Syndrome: The Centers for Disease Control Study". Ciba Foundation Symposium 173 ‐ Chronic Fatigue Syndrome.
  26. 26.0 26.1 Parish, JG (1978). "Early outbreaks of 'epidemic neuromyasthenia'". Postgraduate Medical Journal. 54: 711–7.
  27. Shelokov, Alexis; Habel, Karl; Verder, Elizabeth; Welsh, William (August 1957). "Epidemic Neuromyasthenia — An Outbreak of Poliomyelitis-like Illness in Student Nurses". New England Journal of Medicine (257): 345-355. doi:10.1056/NEJM195708222570801.
  28. Gilliam, A.G. (1938). "Epidemiological Study Of An Epidemic, Diagnosed As Poliomyelitis, Occurring Among The Personnel Of The Los Angeles County General Hospital During The Summer Of 1934". Public health bulletin, 1936-1938: 231-240.
  29. Acheson, E.D. (1959). "The Clinical Syndrome Variously Called Benign Myalgic Encephalomyelitis, Iceland Disease and Epidemic Neuromyasthenia" (PDF). American Journal of Medicine. 26 (4): 569–595.
  30. Poskanzer, David C.; Henderson, Donald A.; Kunkle, E. Charles; Kalter, Seymour S.; Clement, Walter B.; Bond, James O. (1957). "Epidemic Neuromyasthenia — An Outbreak in Punta Gorda, Florida". New England Journal of Medicine (257): 356-364. doi:10.1056/NEJM195708222570802. PMID 13464939.
  31. "An Outbreak of Encephalomyelitis in the Royal Free Hospital Group, London, in 1955". British Medical Journal. 2 (5050): 895–904. October 19, 1957. ISSN 0007-1447. PMC 1962472. PMID 13472002.
  32. 32.0 32.1 Sigurdsson, B (September 1950). "A disease epidemic in Iceland simulating poliomyelitis". American Journal of Hygiene. 52: 222–38.
  33. 33.0 33.1 Hvidberg, Michael Falk; Brinth, Louise Schouborg; Olesen, Anne V; Petersen, Karin D; Ehlers, Lars (July 6, 2015), "The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)", PLoS One, 10 (7): e0132421, doi:10.1371/journal.pone.0132421
  34. Vink, Mark; Vink-Niese, Alexandra (September 20, 2019). "Work Rehabilitation and Medical Retirement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. A Review and Appraisal of Diagnostic Strategies". Diagnostics. 9 (4): 124. doi:10.3390/diagnostics9040124. ISSN 2075-4418.
  35. 35.0 35.1 Ghali, Alaa; Richa, Paul; Lacout, Carole; Gury, Aline; Beucher, Anne-Berengere; Homedan, Chadi; Lavigne, Christian; Urbanski, Geoffrey (June 22, 2020). "Epidemiological and clinical factors associated with post-exertional malaise severity in patients with myalgic encephalomyelitis/chronic fatigue syndrome". Journal of Translational Medicine. 18. doi:10.1186/s12967-020-02419-4. ISSN 1479-5876. PMC 7309998. PMID 32571354.
  36. Underhill, Rosemary (2009). "Pregnancy in Women with Chronic Fatigue Syndrome (ME/CFS)" (PDF). New Jersey Chronic Fatigue Syndrome Association, Inc. Retrieved February 4, 2020.
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  38. 38.0 38.1 Centers for Disease Control (May 15, 2019). "Possible Causes | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | CDC". Centers for Disease Control and Prevention. Retrieved May 24, 2020.
  39. Chu, Lily; Valencia, Ian J.; Garvert, Donn W.; Montoya, Jose G. (February 5, 2019). "Onset Patterns and Course of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Frontiers in Pediatrics. 7 (12). doi:10.3389/fped.2019.00012.
  40. 40.0 40.1 Cairns, R.; Hotopf, M. (January 2005). "A systematic review describing the prognosis of chronic fatigue syndrome". Occupational Medicine (Oxford, England). 55 (1): 20–31. doi:10.1093/occmed/kqi013. ISSN 0962-7480. PMID 15699087.
  41. Joyce, J.; Hotopf, M.; Wessely, S. (March 1997). "The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review". QJM: monthly journal of the Association of Physicians. 90 (3): 223–233. ISSN 1460-2725. PMID 9093600.
  42. "Prognosis | Presentation and Clinical Course | Healthcare Providers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. July 10, 2018. Retrieved October 28, 2018.
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  44. "Dr Keith Geraghty on Twitter". Twitter. Retrieved October 28, 2018.
  45. Roberts, Emmert; Wessely, Simon; Chalder, Trudie; Chang, Chin-Kuo; Hotopf, Matthew (April 2016). "Mortality of people with chronic fatigue syndrome: a retrospective cohort study in England and Wales from the South London and Maudsley NHS Foundation Trust Biomedical Research Centre (SLaM BRC) Clinical Record Interactive Search (CRIS) Register". The Lancet. 387 (10028): 1638–1643. doi:10.1016/S0140-6736(15)01223-4. ISSN 0140-6736.
  46. Interpretive jiggery-pokery in The Lancet A tale of a convenience sample with inconvenient serious limitations. Quick Thoughts, a blog by James Coyne, February 16, 2016
  47. "RISK OF SUICIDE DUE TO NEGLECT AMONGST PWME". Plataforma de Afectadas por los Recortes Sanitarios - La PARS. May 11, 2016. Retrieved August 10, 2018.
  48. Jason, Leonard A.; Corradi, Karina; Gress, Sara; Williams, Sarah; Torres-Harding, Susan (August 2006). "Causes of death among patients with chronic fatigue syndrome". Health Care for Women International. 27 (7): 615–626. doi:10.1080/07399330600803766. ISSN 0739-9332. PMID 16844674.