Royston, Alexander Peter, Rai, Manmita, Brigden, Amberly et al. · Archives of disease in childhood · 2023 · DOI
This British study looked at how many children and young people aged 5-16 have severe ME/CFS, a condition that causes extreme tiredness and makes it very difficult to do everyday activities. Researchers found that severe ME/CFS is uncommon in children, but when it does occur, it causes major disability—most affected young people missed almost all their schooling. The study also found that children got diagnosed relatively quickly, within about 5-6 months of when their symptoms started.
This is the first rigorous epidemiological estimate of severe ME/CFS in children, providing evidence that although rare, severe cases cause profound disability and school exclusion. The study identifies an urgent clinical gap: paediatricians lack established pathways for rehabilitation and education support for these severely disabled young people, making these findings critical for policy and service development.
This study does not establish causation for ME/CFS or identify its underlying mechanisms. It also cannot confirm whether diagnoses made by non-specialist paediatricians using NICE criteria match diagnoses made by ME/CFS specialists, as validation against specialist assessment was limited. The study's focus on severe cases means findings may not apply to children with mild or moderate 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 →
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
Royston, Alexander Peter, Rai, Manmita, Brigden, Amberly, Burge, Sarah, Segal, Terry Y, & Crawley, Esther M (2023). Severe myalgic encephalomyelitis/chronic fatigue syndrome in children and young people: a British Paediatric Surveillance Unit study.. Archives of disease in childhood. https://doi.org/10.1136/archdischild-2022-324319
BibTeX
@article{mecfsatlas-royston-2023-severe-myalgic,
author = {Royston, Alexander Peter and Rai, Manmita and Brigden, Amberly and Burge, Sarah and Segal, Terry Y and Crawley, Esther M},
title = {Severe myalgic encephalomyelitis/chronic fatigue syndrome in children and young people: a British Paediatric Surveillance Unit study.},
journal = {Archives of disease in childhood},
year = {2023},
doi = {10.1136/archdischild-2022-324319},
note = {PubMed: 36456114},
url = {https://www.mecfsatlas.com/evidence/royston-2023-severe-myalgic},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-30. https://www.mecfsatlas.com/evidence/royston-2023-severe-myalgic
Contribute
Private, reviewed by a human. Not a public comment thread.