Mansoubi, Maedeh, Richards, Thomas, Ainsworth-Wells, Martine et al. · BMJ open · 2025 · DOI
This large UK survey asked over 8,800 people with ME/CFS or long COVID about their symptoms and experiences with healthcare. The study found that fatigue, brain fog, pain, and sleep problems are the most common symptoms, but people often wait years for a diagnosis. Even after new healthcare guidelines were introduced, most patients said they weren't satisfied with the care they received from the NHS.
This study provides robust evidence that ME/CFS patients face prolonged diagnostic delays and significant dissatisfaction with NHS services despite recent guideline updates, highlighting a critical gap between policy and practice. The findings validate the common experience of patients struggling to access appropriate care and support the need for systemic improvements in diagnosis, recognition, and management within the health system.
This cross-sectional survey cannot determine whether diagnostic delays cause worse outcomes or whether low satisfaction is due to guideline implementation failures versus other healthcare system factors. The study identifies what patients report but does not prove causation between NICE guidelines and clinical practice changes, nor does it establish why symptom clusters exist or their underlying biological mechanisms.
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
Mansoubi, Maedeh, Richards, Thomas, Ainsworth-Wells, Martine, Fleming, Russell, Leveridge, Phaedra, Shepherd, Charles, et al. (2025). Understanding symptom clusters, diagnosis and healthcare experiences in myalgic encephalomyelitis/chronic fatigue syndrome and long COVID: a cross-sectional survey in the UK.. BMJ open. https://doi.org/10.1136/bmjopen-2024-094658
BibTeX
@article{mecfsatlas-mansoubi-2025-understanding-symptom,
author = {Mansoubi, Maedeh and Richards, Thomas and Ainsworth-Wells, Martine and Fleming, Russell and Leveridge, Phaedra and Shepherd, Charles and Dawes, Helen},
title = {Understanding symptom clusters, diagnosis and healthcare experiences in myalgic encephalomyelitis/chronic fatigue syndrome and long COVID: a cross-sectional survey in the UK.},
journal = {BMJ open},
year = {2025},
doi = {10.1136/bmjopen-2024-094658},
note = {PubMed: 40180399},
url = {https://www.mecfsatlas.com/evidence/mansoubi-2025-understanding-symptom},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-28. https://www.mecfsatlas.com/evidence/mansoubi-2025-understanding-symptom
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