Bell, D S, Jordan, K, Robinson, M · Pediatrics · 2001 · DOI
This study followed 35 children and teenagers who developed ME/CFS, checking in with them about 13 years after they first got sick. Most participants (80%) felt they had recovered or were doing reasonably well by the follow-up, though many still had some lingering symptoms. However, about 20% remained significantly ill with ongoing fatigue and activity limitations a decade and a half later.
This study is one of the few long-term follow-up studies in pediatric ME/CFS, providing crucial evidence that the condition can persist into adulthood with substantial functional impact in a significant minority of cases. It demonstrates that ME/CFS in children is not universally self-limited and supports the recognition of ME/CFS as a legitimate chronic illness requiring clinical attention.
This study does not establish the causes of ME/CFS or why some children recover while others remain ill. It also does not prove that early interventions could have changed outcomes, as there is no comparison of different treatment approaches. The reliance on subjective self-assessment of recovery and illness status may not accurately reflect objective functional capacity or biological disease state.
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 →
The first block is for the primary paper and is the citation you should use in research work. The atlas-snapshot line only applies if you are specifically referring to this atlas’s reading of the paper on the date shown.
Primary citation
Bell, D S, Jordan, K, & Robinson, M (2001). Thirteen-year follow-up of children and adolescents with chronic fatigue syndrome.. Pediatrics. https://doi.org/10.1542/peds.107.5.994
BibTeX
@article{mecfsatlas-bell-2001-thirteen-year,
author = {Bell, D S and Jordan, K and Robinson, M},
title = {Thirteen-year follow-up of children and adolescents with chronic fatigue syndrome.},
journal = {Pediatrics},
year = {2001},
doi = {10.1542/peds.107.5.994},
note = {PubMed: 11331676},
url = {https://www.mecfsatlas.com/evidence/bell-2001-thirteen-year},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-28. https://www.mecfsatlas.com/evidence/bell-2001-thirteen-year
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