Most pediatric prevalence studies of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been based upon data from tertiary care centers, a process known for systematic biases such as excluding youth of lower socioeconomic status and those less likely to have access to health care. In addition, most pediatric ME/CFS epidemiologic studies have not included a thorough medical and psychiatric examination. The purpose of this study was to determine the prevalence of pediatric ME/CFS from an ethnically and sociodemographically diverse community-based random sample.
A sample of 10,119 youth aged 5–17 from 5622 households in the Chicagoland area were screened. Following evaluations, a team of physicians made final diagnoses. Youth were given a diagnosis of ME/CFS if they met criteria for three selected case definitions. A probabilistic, multi-stage formula was used for final prevalence calculations.
The prevalence of pediatric ME/CFS was 0.75%, with a higher percentage being African American and Latinx than Caucasian. Of the youth diagnosed with ME/CFS, less than 5% had been previously diagnosed with the illness.
Many youth with the illness have not been previously diagnosed with ME/CFS. These findings point to the need for better ways to identify and diagnose youth with this illness.
This is a preview of subscription content, log in to check access.
Buy single article
Instant access to the full article PDF.
Price includes VAT for USA
Subscribe to journal
Immediate online access to all issues from 2019. Subscription will auto renew annually.
This is the net price. Taxes to be calculated in checkout.
Arav-Boger, R., & Spirer, Z. (1995). Chronic fatigue syndrome: Pediatric aspects. Israel Journal of Medical Sciences,31, 330–334.
Bakken, I. J., Tveito, K., Gunnes, N., Ghaderi, S., Stoltenberg, C., Trogstad, L., et al. (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.
Bell, D. S. (1995). Chronic fatigue syndrome in children. Journal of Chronic Fatigue Syndrome,1(1), 9–33.
Brown, A. A., & Jason, L. A. (2014). Validating a measure of myalgic encephalomyelitis/chronic fatigue syndrome symptomatology. Fatigue: Biomedicine, Health and Behavior,2, 132–152.
Brown, M. M., Bell, D. S., Jason, L. A., Christos, C., & Bell, D. E. (2012). Understanding long-term outcomes of chronic fatigue syndrome. Journal of Clinical Psychology, 68(9), 1028–1035.
Carruthers, B. M., Jain, A. K., De Meirleir, K. L., Peterson, D. L., Klimas, N., Lerner, A. M., et al. (2003). Myalgic encephalomyelitis/chronic fatigue syndrome: Clinical working case definition, diagnostic and treatment protocols. Journal of Chronic Fatigue Syndrome,11(1), 7–115.
Chalder, T., Goodman, R., Wessely, S., Hotopf, M., & Meltzer, H. (2003). Epidemiology of chronic fatigue syndrome and self reported myalgic encephalomyelitis in 5–15 year olds: cross sectional study. BMJ,327, 654–655.
Collin, S. M., Norris, T., Nuevo, R., Tilling, K., Joinson, C., Sterne, J. A. C., et al. (2016). Chronic fatigue syndrome at age 16 years. Pediatrics,137(2), e20153434.
Devendorf, A. R., Jackson, C. T., Sunnquist, M., & Jason, L. A. (2019). Defining and measuring recovery from myalgic encephalomyelitis and chronic fatigue syndrome: the physician perspective. Disability and Rehabilitation,41(2), 158–165.
Dobbins, J. G., Randall, B., Reyes, M., Steele, L., Livens, E. A., & Reeves, W. C. (1997). The prevalence of chronic fatiguing illnesses among adolescents in the United States. Journal of Chronic Fatigue Syndrome,3, 15–27.
Dowsett, E. G., & Colby, J. (1997). Chronic fatigue syndrome in children: Journal was wrong to criticize study in school children. British Medical Journal,315(7113), 949.
Farmer, A., Fowler, T., Scourfield, J., & Thapar, A. (2004). Prevalence of chronic disabling fatigue in children and adolescents. British Journal of Psychiatry,186, 477–481.
Fukuda, K., Straus, S. E., Hickie, I., Sharpe, M. C., Dobbins, J. G., & Komaroff, A. (1994). The chronic fatigue syndrome: A comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group. Annals of Internal Medicine,121(12), 953–959.
Gleason, K. D., Stoothoff, J., McClellan, D., McManimen, S., Thorpe, T., Katz, B. Z., et al. (2018). Operationalizing substantial reduction in functioning among young adults with chronic fatigue syndrome. International Journal of Behavioral Medicine,25, 448–455.
Gunn, W. J., Connell, D. B., & Randall, B. (1993). Epidemiology of chronic fatigue syndrome: The centers for disease control study. In G. Bock & J. Whelan (Eds.), Chronic fatigue syndrome (pp. 83–101). New York: Wiley.
Harris, P. A., Taylor, R., Thielke, R., Payne, J., Gonzalez, N., & Conde, J. G. (2009). Research electronic data capture (REDCap)—A metadata-driven methodology and workflow process for providing translational research informatics support. Journal of Biomedical Informatics,42(2), 377–381.
I.O.M. (Institute of Medicine). (2015). Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. Washington, DC: The National Academies.
Jason, L., Porter, N., Shelleby, E., Lindsay, T., Bell, D., Lapp, C., et al. (2010). Examining criteria to diagnose ME/CFS in pediatric samples. Journal of Behavioral Health and Medicine,3, 186–195.
Jason, L. A., Bell, D. S., Rowe, K., Van Hoof, E. L. S., Jordan, K., Lapp, C., et al. (2006). A pediatric case definition for ME/CFS. Journal of Chronic Fatigue Syndrome,13, 1–44.
Jason, L. A., Porter, N., & Rademaker, A. (2012). Epidemiologic approaches. In L. A. Jason & D. S. Glenwick (Eds.), Innovative methodological approaches to community-based research: Theory and application. Washington, DC: American Psychological Association.
Jason, L. A., Porter, N., Shelleby, E., Till, L., Bell, D. S., Lapp, C. W., et al. (2009). Severe versus moderate criteria for the new pediatric case definition for ME/CFS. Child Psychiatry and Human Development,40, 609–620. https://doi.org/10.1007/s10578-009-0147-8.
Jason, L. A., Richman, J. A., Rademaker, A. W., Jordan, K. M., Plioplys, A. V., Taylor, R. R., et al. (1999). A community-based study of chronic fatigue syndrome. Archives of Internal Medicine,159, 2129–2137.
Jason, L. A., So, S., Brown, A. A., Sunnquist, M., & Evans, M. (2015). Test-retest reliability of the DePaul Symptom Questionnaire. Fatigue: Biomedicine, Health and Behavior,3, 16–32.
Jason, L. A., & Sunnquist, M. (2018). The development of the DePaul Symptom Questionnaire: Original, expanded, brief and pediatric versions. Frontiers in Pediatrics,6, 330. https://doi.org/10.3389/fped.2018.00330.
Jason, L. A., Taylor, R. R., Kennedy, C. L., Jordan, K., Song, S., Johnson, D., et al. (2000). Chronic fatigue syndrome: Sociodemographic subtypes in a community-based sample. Evaluation and the Health Professions,23, 243–263.
Jones, J. F., Nisenbaum, R., Solomon, L., Reyes, M., & Reeves, W. C. (2004). Chronic fatigue syndrome and other fatiguing illnesses in adolescents: A population-based study. Journal of Adolescent Health,35, 34–40.
Jordan, K. M., Ayers, P. M., Jahn, S. C., Taylor, K. K., Huang, C.-F., Richman, R., et al. (2000). Prevalence of fatigue and chronic fatigue syndrome-like illness in children and adolescents. Journal of Chronic Fatigue Syndrome,6(1), 3–21. https://doi.org/10.1300/J092v06n01_02.
Jordan, K. M., Jason, L. A., Mears, C. J., Katz, B. Z., Rademaker, A., Cheng-Fang, H., et al. (2006). Prevalence of pediatric chronic fatigue syndrome in a community-based sample. Journal of Chronic Fatigue Syndrome,6(2–3), 75–78.
Jordan, K. M., Landis, D. A., Downey, M. C., Osterman, S. L., Thurm, A. E., & Jason, L. A. (1998). Chronic fatigue syndrome in children and adolescents. Journal of Adolescent Health,22, 4–18.
Josev, E. K., Jackson, M. L., Bei, B., Trinder, J., Harvey, A., Clarke, C., et al. (2017). Sleep quality in adolescents with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). Journal of Clinical Sleep Medicine,13(9), 1057–1066.
Kaufman, J., Birmaher, B., Brent, D., Rao, U., Flynn, C., Moreci, P., et al. (1997). Schedule for affective disorders and schizophrenia for school-age children—Present and lifetime version (KSADS-PL): Initial reliability and validity data. Journal of the American Academy of Child and Adolescent Psychiatry,36, 980–988.
Kennedy, G., Underwood, C., & Belch, J. J. F. (2010). Physical and functional impact of chronic fatigue syndrome/myalgic encephalomyelitis in childhood. Pediatrics,125(6), e1324–e1330.
Krilov, L. R., Fisher, M., Friedman, S. B., Reitman, D., & Mandel, F. S. (1998). Course and outcome of chronic fatigue in children and adolescents. Pediatrics,102(2), 360–366.
Krupp, L. B., LaRocca, N. G., Muir-Nash, J., & Steinberg, A. D. (1989). The fatigue severity scale: Application to patients with multiple sclerosis and systemic Lupus erythematosus. Archives of Neurology,46, 1121–1123.
Landgraf, J. M., Abetz, L., & Ware, J. E. (1996). The Child Health Questionnaire (CHQ): A user’s manual. Boston, MA: The Health Institute, New England Medical Center.
Lapp, C. W. (2006). Recognizing pediatric CFS in the primary care practice: A practicing clinician’s approach. Journal of Chronic Fatigue Syndrome,13(2–3), 89–96.
Lloyd, A. R., Hickie, I., Boughton, C. R., Spencer, O., & Wakefield, D. (1990). Prevalence of chronic fatigue syndrome in an Australian population. The Medical Journal of Australia,153, 522–528.
Murdock, K. W., Wang, X. S., Cleeland, C. S., Fagundes, C. P., & Vernon, S. D. (2016). The utility of patient-reported outcome measures among patients with myalgia encephalomyelitis/chronic fatigue syndrome. Quality of Life Research. https://doi.org/10.1007/s11136-016-1406-3.
Nijhof, S. L., Maijer, K., Bleijenberg, G., Uiterwaal, C. S. P. M., Kimpen, J. L. L., & van Putte, E. M. (2011). Adolescent chronic fatigue syndrome: Prevalence, incidence, and morbidity. Pediatrics,127, 1169–1175.
Patel, M. X., Smith, D. G., Chalder, T., & Wessely, S. (2003). Chronic fatigue syndrome in children: A cross sectional survey. Archives of Disease in Childhood,88(10), 894–898.
Pelcovitz, D., Septimus, A., Friedman, S. B., Krilov, L. R., Mandel, F., & Kaplan, S. (1995). Psychosocial correlates of chronic fatigue syndrome in adolescent girls. Developmental and Behavioral Pediatrics,16, 333–338.
Pepper, C. M., Krupp, L. B., Friedberg, F., Doscher, C., & Coyle, P. K. (1993). A comparison of neuropsychiatric characteristics in chronic fatigue syndrome, multiple sclerosis, and major depression. The Journal of Neuropsychiatry and Clinical Neurosciences,5, 200–205.
Reeves, W. C., Jones, J. F., Maloney, E., Heim, C., Hoaglin, D. C., Boneva, R. S., et al. (2007). Prevalence of chronic fatigue syndrome in metropolitan, urban, and rural Georgia. Population Health Metrics,5, 1–10. https://doi.org/10.1186/1478-7954-5-5.
Reeves, W. C., Lloyd, A., Vernon, S. D., Klimas, N., Jason, L., Bleijenberg, G., et al. (2003). Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution. BMC Health Services Research,3, 25.
Reyes, M., Nisenbaum, R., Hoaglin, D. C., Unger, E. R., Emmons, C., Randall, B., et al. (2003). Prevalence and incidence of chronic fatigue syndrome in Wichita, Kansas. Archives of Internal Medicine,163, 1530–1536.
Rimes, K. A., Goodman, R., Hotopf, M., Wessely, S., Meltzer, H., & Chalder, T. (2007). Incidence, prognosis, and risk factors for fatigue and chronic fatigue syndrome in adolescents: A prospective community study. Pediatrics,119(3), e603–e609.
Rowe, K. S. (2019). Long term follow up of young people with chronic fatigue syndrome attending a pediatric outpatient service. Frontiers in Pediatric,7, 1–18.
Rowe, P. C., Underhill, R. A., Friedman, K. J., Gurwitt, A., Medow, M. S., Schwartz, M. S., et al. (2017). Myalgic encephalomyelitis/chronic fatigue syndrome diagnosis and management in young people: A primer. Frontiers in Pediatrics,5, 121. https://doi.org/10.3389/fped.2017.00121.
Sletten, D. M., Suarez, G. A., Low, P. A., Mandrekar, J., & Singer, W. (2012). COMPASS 31: A refined and abbreviated composite autonomic symptom score. Mayo Clinic Proceedings,87(12), 1196–1201. https://doi.org/10.1016/j.mayocp.2012.10.013.
Strand, E. B., Lillestøl, K., Jason, L. A., Tveito, K., Diep, L. M., Valla, S. S., et al. (2016). Comparing the DePaul Symptom Questionnaire with physician assessments: A preliminary study. Fatigue: Biomedicine, Health and Behavior,4, 52–62. https://doi.org/10.1080/21641846.2015.1126026.
Suarez, G. A., Opfer-Gehrking, T. L., Offord, K. P., Atkinson, E. J., O’Brien, P. C., & Low, P. A. (1999). The autonomic symptom profile: A new instrument to assess autonomic symptoms. Neurology,52(3), 523–528.
Torres-Harding, S. R., Jordan, K., Jason, L. A., & Arias, R. (2006). Psychosocial and physical impact of chronic fatigue syndrome in a community-based sample of children and adolescents. Journal of Chronic Fatigue Syndrome,13(2–3), 55–73.
U.S. Census Bureau. (2017a). Selected economic characteristics: 2013–2017 American community survey 5-year estimates (Report No: DPO3). Retrieved from: https://factfinder.census.gov/faces/tableservices/jsf/pages/productview.xhtml?src=CF.
U.S. Census Bureau. (2017b). Selected social characteristics in the United States: 2013-2017 American community survey 5-year estimates (Report No: S1501). Retrieved from https://factfinder.census.gov/faces/tableservices/jsf/pages/productview.xhtml?src=CF.
Walford, G. A., Nelson, W. M., & McCluskey, D. R. (1993). Fatigue, depression, and social adjustment in chronic fatigue syndrome. Archives of Disease in Childhood,68, 384–388.
Waters, E., Stewart-Brown, S., & Fitzpatrick, R. (2003). Agreement between adolescent self- report and parent reports of health and well-being: Results of an epidemiological study. Child: Care, Health and Development,29(6), 501–509. https://doi.org/10.1046/j.1365-2214.2003.00370.x.
Research reported in this publication was supported by the Eunice Kennedy Shriver National Institute Of Child Health & Human Development of the National Institutes of Health under Award Number R01 HD072208. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
About this article
Cite this article
Jason, L.A., Katz, B.Z., Sunnquist, M. et al. The Prevalence of Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community-Based Sample. Child Youth Care Forum (2020). https://doi.org/10.1007/s10566-019-09543-3
- Myalgic encephalomyelitis/chronic fatigue syndrome