Jason, Leonard A, Katz, Ben Z, Sunnquist, Madison et al. · Child & youth care forum · 2020 · DOI
Researchers studied over 10,000 children and teenagers in the Chicago area to find out how many have ME/CFS. They found that about 0.75% (roughly 1 in 133) young people have the condition, with higher rates among African American and Latino youth. Importantly, less than 5% of these children had been diagnosed before the study, meaning many young people with ME/CFS are going unrecognized by doctors.
This study is important because it provides one of the first rigorous prevalence estimates of pediatric ME/CFS from a representative community sample rather than clinic populations, reducing bias toward severely affected or well-resourced patients. The finding that most affected youth remain undiagnosed highlights a critical diagnostic gap in pediatric medicine and underscores the need for improved clinical recognition and education. The higher prevalence in racial and ethnic minority youth suggests potential health equity disparities that warrant further investigation.
This study does not establish what causes ME/CFS or why certain racial/ethnic groups have higher prevalence rates. The cross-sectional design cannot determine whether undiagnosed youth had ME/CFS longer than diagnosed youth or establish temporal relationships. The study also does not prove that improved screening alone will lead to better health outcomes for young people with ME/CFS.
About the PEM badge: “PEM required” means post-exertional malaise was an explicit required diagnostic criterion for participant inclusion in this study — not that PEM was studied, observed, or discussed. Studies using criteria that do not require PEM (e.g. Fukuda, Oxford) are tagged “PEM not required”. How the atlas works →
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