Samms, Gemma L, Ponting, Chris P · NIHR open research · 2025 · DOI
This study looked at how ME/CFS is identified in UK Biobank, a large database of health information from hundreds of thousands of people. Researchers found that about 1 in 100 UK Biobank participants had some evidence of ME/CFS, but only about one-third had strong, consistent evidence across multiple records. When they accounted for people too ill to participate in the study, they estimated that around 410,000 people in the UK have ME/CFS.
ME/CFS research has been hindered by small studies with unreplicated findings. This study demonstrates how large population biobanks like UK Biobank can accelerate discovery by providing standardized data on thousands of ME/CFS cases and controls simultaneously, while also highlighting that accurate case identification requires multiple evidence sources—an important methodological insight for future biobank-based ME/CFS research.
This study does not identify causes or underlying mechanisms of ME/CFS, nor does it provide evidence for any specific diagnostic test or biomarker. It also does not compare treatment outcomes or track disease progression, and the prevalence estimate applies specifically to the UK context and may not generalize to other populations or healthcare systems.
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
Samms, Gemma L & Ponting, Chris P (2025). Defining a High-Quality Myalgic Encephalomyelitis/Chronic Fatigue Syndrome cohort in UK Biobank.. NIHR open research. https://doi.org/10.3310/nihropenres.13956.1
BibTeX
@article{mecfsatlas-samms-2025-defining-high,
author = {Samms, Gemma L and Ponting, Chris P},
title = {Defining a High-Quality Myalgic Encephalomyelitis/Chronic Fatigue Syndrome cohort in UK Biobank.},
journal = {NIHR open research},
year = {2025},
doi = {10.3310/nihropenres.13956.1},
note = {PubMed: 40443420},
url = {https://www.mecfsatlas.com/evidence/samms-2025-defining-high},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-27. https://www.mecfsatlas.com/evidence/samms-2025-defining-high
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