Webb, Carly M, Collin, Simon M, Deave, Toity et al. · BMC health services research · 2011 · DOI
Children with ME/CFS are waiting much longer than recommended to see a specialist—the typical wait is 18 months, while guidelines suggest assessment should happen within 3-6 months. This study found that many GPs and other doctors don't know enough about ME/CFS or how to refer children properly, and some had negative attitudes toward the condition. Parents also found it hard to explain an 'invisible' illness to healthcare providers, which delayed their children from getting the specialist care they needed.
This study reveals a critical gap between clinical guidelines and practice—children with ME/CFS are experiencing dangerous diagnostic delays despite clear NICE recommendations. Understanding healthcare system barriers is essential for improving access to appropriate care, reducing school absences, and preventing further disability in affected children.
This study does not prove that healthcare provider attitudes *cause* diagnostic delays, only that they are associated with the problem. It also does not establish whether more severe fatigue itself speeds assessment or whether severe symptoms prompt parents to pursue care more aggressively. The findings from one UK regional service may not generalize to other healthcare systems or countries.
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
Webb, Carly M, Collin, Simon M, Deave, Toity, Haig-Ferguson, Andrew, Spatz, Amy, & Crawley, Esther (2011). What stops children with a chronic illness accessing health care: a mixed methods study in children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME).. BMC health services research. https://doi.org/10.1186/1472-6963-11-308
BibTeX
@article{mecfsatlas-webb-2011-what-stops,
author = {Webb, Carly M and Collin, Simon M and Deave, Toity and Haig-Ferguson, Andrew and Spatz, Amy and Crawley, Esther},
title = {What stops children with a chronic illness accessing health care: a mixed methods study in children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME).},
journal = {BMC health services research},
year = {2011},
doi = {10.1186/1472-6963-11-308},
note = {PubMed: 22078101},
url = {https://www.mecfsatlas.com/evidence/webb-2011-what-stops},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-25. https://www.mecfsatlas.com/evidence/webb-2011-what-stops
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