Strassheim, Victoria Jane, Sunnquist, Madison, Jason, Leonard A et al. · BMJ open · 2018 · DOI
This study tried to find out how many people in Northern England have severe ME/CFS and what symptoms they experience. Researchers sent questionnaires to people with ME/CFS and then invited five participants to take part in home-based research visits. The study found that people with severe ME/CFS want to participate in research but struggle with their high symptom burden and poor quality of life, which makes completing research visits challenging.
This study provides important insights into the experiences and needs of people with severe ME/CFS, who are often excluded from research due to their inability to travel to research centers. It demonstrates that home-based research methods can be more accessible but require careful planning given the high symptom burden these patients experience. Understanding these realities helps researchers design more feasible and compassionate studies for this vulnerable population.
This pilot study does not establish the true prevalence of severe ME/CFS in the general population, as the low questionnaire response rate (13%) may not represent all affected individuals. The small sample size (n=5 for phase 2) and geographic limitation to Northern England limit generalizability to other populations. The study does not explain why some individuals without meeting formal diagnostic criteria reported severe fatigue.
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
Strassheim, Victoria Jane, Sunnquist, Madison, Jason, Leonard A, & Newton, Julia L (2018). Defining the prevalence and symptom burden of those with self-reported severe chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a two-phase community pilot study in the North East of England.. BMJ open. https://doi.org/10.1136/bmjopen-2017-020775
BibTeX
@article{mecfsatlas-strassheim-2018-defining-prevalence,
author = {Strassheim, Victoria Jane and Sunnquist, Madison and Jason, Leonard A and Newton, Julia L},
title = {Defining the prevalence and symptom burden of those with self-reported severe chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a two-phase community pilot study in the North East of England.},
journal = {BMJ open},
year = {2018},
doi = {10.1136/bmjopen-2017-020775},
note = {PubMed: 30232103},
url = {https://www.mecfsatlas.com/evidence/strassheim-2018-defining-prevalence},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-30. https://www.mecfsatlas.com/evidence/strassheim-2018-defining-prevalence
Contribute
Private, reviewed by a human. Not a public comment thread.