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Published on: July 4, 2007
The Prevalence of Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community‑Based Sample
Leonard A Jason1, Ben Z Katz2, Madison Sunnquist3
1Center for Community Research, DePaul University, 990 W. Fullerton Ave., Suite 3100, Chicago, IL 60614, USA.
Insights
The study found that 0.75% of children aged 5-17 have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Most diagnosed youth were not previously identified, highlighting a need for improved pediatric ME/CFS diagnosis.
Area of Science:
- Pediatric Epidemiology
- Chronic Illness Research
- Public Health
Background:
- Previous pediatric ME/CFS studies relied on biased tertiary care data.
- Studies often excluded lower socioeconomic status and healthcare-inaccessible youth.
- Limited medical and psychiatric evaluations were common in prior pediatric ME/CFS research.
Purpose of the Study:
- To determine the prevalence of pediatric ME/CFS in a diverse community sample.
- To address biases inherent in tertiary care-based pediatric ME/CFS studies.
- To establish a more accurate prevalence rate for pediatric ME/CFS.
Main Methods:
- Screened 10,119 youth aged 5-17 from 5622 households in the Chicagoland area.
- Physician teams made final diagnoses based on established ME/CFS case definitions.
- Utilized a probabilistic, multi-stage formula for prevalence calculations.
Main Results:
- The prevalence of pediatric ME/CFS was found to be 0.75%.
- African American and Latinx youth represented a higher percentage of diagnosed cases compared to Caucasian youth.
- Less than 5% of diagnosed youth had a prior ME/CFS diagnosis.
Conclusions:
- A significant number of youth with ME/CFS remain undiagnosed.
- Current diagnostic methods may not effectively identify pediatric ME/CFS cases.
- Improved strategies are needed for identifying and diagnosing ME/CFS in children and adolescents.
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.
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