Pheby, Derek, Lacerda, Eliana, Nacul, Luis et al. · BMC research notes · 2011 · DOI
Researchers created a disease register (a database) to identify and track people with ME/CFS in a fair and systematic way. They searched GP records in three regions of England and found 510 patients with unexplained chronic fatigue, of which 160 agreed to join the register. By following these patients over time, researchers can better understand how ME/CFS progresses and use this group for future studies.
This study demonstrates a practical method for systematically identifying ME/CFS patients from primary care databases, solving a major research challenge of recruiting representative populations. Having a well-characterized disease register and long-term cohort enables future research to answer questions about prognosis, natural history, and disease mechanisms in ME/CFS.
This pilot study does not establish the causes of ME/CFS, does not prove prognosis or long-term outcomes (follow-up was limited to one year with only 50 subjects), and does not demonstrate comprehensive population coverage. The findings apply mainly to diagnosed patients in primary care and may not represent undiagnosed cases or those in specialist care.
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
Pheby, Derek, Lacerda, Eliana, Nacul, Luis, Drachler, Maria de Lourdes, Campion, Peter, Howe, Amanda, et al. (2011). A Disease Register for ME/CFS: Report of a Pilot Study.. BMC research notes. https://doi.org/10.1186/1756-0500-4-139
BibTeX
@article{mecfsatlas-pheby-2011-disease-register,
author = {Pheby, Derek and Lacerda, Eliana and Nacul, Luis and Drachler, Maria de Lourdes and Campion, Peter and Howe, Amanda and Poland, Fiona and Curran, Monica and Featherstone, Valerie and Fayyaz, Shagufta and Sakellariou, Dikaios and Leite, José Carlos de Carvalho},
title = {A Disease Register for ME/CFS: Report of a Pilot Study.},
journal = {BMC research notes},
year = {2011},
doi = {10.1186/1756-0500-4-139},
note = {PubMed: 21554673},
url = {https://www.mecfsatlas.com/evidence/pheby-2011-disease-register},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-30. https://www.mecfsatlas.com/evidence/pheby-2011-disease-register
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