Royston, Alexander Peter, Burge, Sarah, Idini, Ilaria et al. · BMJ paediatrics open · 2024 · DOI
This UK study looked at how children and young people with severe ME/CFS are diagnosed and treated. Researchers found that many young people with suspected severe ME/CFS were not getting complete medical investigations to rule out other conditions, and most were not being referred to specialist services. The care these young people received varied greatly, and some didn't receive any help at all.
This study reveals significant gaps in how severe ME/CFS is managed in UK children and young people—a vulnerable population where the condition severely impacts education and development. The findings highlight that current clinical practice does not align with NICE guidelines, particularly for the most severely affected young people who are housebound or bedbound. Understanding these care gaps is essential for advocacy, service improvement, and ensuring young people receive appropriate diagnosis and support.
This observational study does not prove that better adherence to NICE guidelines would improve outcomes, nor does it establish which specific management approaches are most effective. The study describes current practice patterns but cannot determine causation or establish the optimal diagnostic workup for ruling out alternative diagnoses. The relatively small sample size may not represent all UK regions or healthcare settings.
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, Burge, Sarah, Idini, Ilaria, Brigden, Amberly, & Pike, Katharine Claire (2024). Management of severe ME/CFS in children and young people in the UK: a British Paediatric Surveillance Unit study.. BMJ paediatrics open. https://doi.org/10.1136/bmjpo-2023-002436
BibTeX
@article{mecfsatlas-royston-2024-management-severe,
author = {Royston, Alexander Peter and Burge, Sarah and Idini, Ilaria and Brigden, Amberly and Pike, Katharine Claire},
title = {Management of severe ME/CFS in children and young people in the UK: a British Paediatric Surveillance Unit study.},
journal = {BMJ paediatrics open},
year = {2024},
doi = {10.1136/bmjpo-2023-002436},
note = {PubMed: 38453418},
url = {https://www.mecfsatlas.com/evidence/royston-2024-management-severe},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-27. https://www.mecfsatlas.com/evidence/royston-2024-management-severe
Contribute
Private, reviewed by a human. Not a public comment thread.