Skip to main content

Advertisement

SpringerLink
Log in

The Prevalence of Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community-Based Sample

  • Original Paper
  • Published:
Child & Youth Care Forum Aims and scope Submit manuscript

Abstract

Background

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.

Method

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.

Results

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.

Conclusions

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 via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  • Arav-Boger, R., & Spirer, Z. (1995). Chronic fatigue syndrome: Pediatric aspects. Israel Journal of Medical Sciences,31, 330–334.

    PubMed  Google Scholar 

  • 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.

    PubMed  PubMed Central  Google Scholar 

  • Bell, D. S. (1995). Chronic fatigue syndrome in children. Journal of Chronic Fatigue Syndrome,1(1), 9–33.

    Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    PubMed  PubMed Central  Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    PubMed  PubMed Central  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • I.O.M. (Institute of Medicine). (2015). Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. Washington, DC: The National Academies.

    Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    PubMed  PubMed Central  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    PubMed  PubMed Central  Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    PubMed  PubMed Central  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  Google Scholar 

Download references

Acknowledgements

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.

Author information

Authors and Affiliations

  1. Center for Community Research, DePaul University, 990 W. Fullerton Ave., Suite 3100, Chicago, IL, 60614, USA

    Leonard A. Jason

  2. Northwestern University Feinberg School of Medicine and Ann and Robert H. Lurie Children’s Hospital of Chicago, Chicago, USA

    Ben Z. Katz

  3. DePaul University, Chicago, USA

    Madison Sunnquist, Chelsea Torres, Joseph Cotler & Shaun Bhatia

Authors
  1. Leonard A. Jason
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Ben Z. Katz
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Madison Sunnquist
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Chelsea Torres
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Joseph Cotler
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Shaun Bhatia
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Leonard A. Jason.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

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 49, 563–579 (2020). https://doi.org/10.1007/s10566-019-09543-3

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10566-019-09543-3

Keywords

Search

Navigation