Slavin, Mary D, Bailey, Hannah M, Hickey, Emily J et al. · PloS one · 2023 · DOI
This study examined how well existing questionnaires measure the main symptoms of ME/CFS. Researchers looked at 38 different symptom-assessment tools and found they do a good job measuring physical symptoms like fatigue, sleep problems, and pain. However, most tools don't adequately measure how ME/CFS limits daily activities and participation in work, social life, and other important areas of life.
This study is important because ME/CFS diagnosis and management rely heavily on symptom questionnaires, yet most existing tools inadequately capture how the disease disrupts patients' daily functioning and quality of life. By identifying these gaps, the research provides a roadmap for developing better assessment tools that could improve clinical diagnosis and help providers understand the full impact of ME/CFS on patients' lives.
This study does not test whether current measures are clinically effective for diagnosis or treatment monitoring—it only analyzes their content. It does not prove that developing new measures with more activity-limitation items will actually improve patient care or outcomes. The findings reflect a snapshot of available tools and do not establish causation for why current measures have these coverage patterns.
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
Slavin, Mary D, Bailey, Hannah M, Hickey, Emily J, Vasudevan, Ananya, Ledingham, Aileen, Tannenbaum, Linda, et al. (2023). Myalgic Encephalomyelitis-Chronic Fatigue Syndrome Common Data Element item content analysis.. PloS one. https://doi.org/10.1371/journal.pone.0291364
BibTeX
@article{mecfsatlas-slavin-2023-myalgic-encephalomyelitis,
author = {Slavin, Mary D and Bailey, Hannah M and Hickey, Emily J and Vasudevan, Ananya and Ledingham, Aileen and Tannenbaum, Linda and Bateman, Lucinda and Kaufman, David L and Peterson, Daniel L and Ruhoy, Ilene S and Systrom, David M and Felsenstein, Donna and Kazis, Lewis E},
title = {Myalgic Encephalomyelitis-Chronic Fatigue Syndrome Common Data Element item content analysis.},
journal = {PloS one},
year = {2023},
doi = {10.1371/journal.pone.0291364},
note = {PubMed: 37698999},
url = {https://www.mecfsatlas.com/evidence/slavin-2023-myalgic-encephalomyelitis},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-28. https://www.mecfsatlas.com/evidence/slavin-2023-myalgic-encephalomyelitis
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