Brimmer, Dana J, Lin, Jin-Mann S, Unger, Elizabeth R · Fatigue : biomedicine, health & behavior · 2025 · DOI
Researchers created a respectful way to collect and share stories directly from people living with ME/CFS in their own words. Over four years, eight patient stories were completed and shared on the CDC website, where they were read more than 196,000 times. This study shows that patients appreciate having their voices heard and can help educate others about what it's really like to live with ME/CFS.
This study validates the importance of centering patient voices in ME/CFS research and advocacy. For patients, it demonstrates that the medical and public health community recognizes their experiences are worth documenting and sharing. The high readership suggests patient narratives effectively educate the public and may help reduce stigma and improve healthcare understanding of ME/CFS.
This study does not provide data on ME/CFS causes, treatments, or disease mechanisms. It does not assess whether hearing patient stories actually changes healthcare provider behavior or improves clinical care. The study focuses on methodology rather than testing specific hypotheses about ME/CFS etiology or outcomes.
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
Brimmer, Dana J, Lin, Jin-Mann S, & Unger, Elizabeth R (2025). Voice of the patient: people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) share in their own words.. Fatigue : biomedicine, health & behavior. https://doi.org/10.1080/21641846.2024.2444826
BibTeX
@article{mecfsatlas-brimmer-2025-voice-patient,
author = {Brimmer, Dana J and Lin, Jin-Mann S and Unger, Elizabeth R},
title = {Voice of the patient: people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) share in their own words.},
journal = {Fatigue : biomedicine, health & behavior},
year = {2025},
doi = {10.1080/21641846.2024.2444826},
note = {PubMed: 40123856},
url = {https://www.mecfsatlas.com/evidence/brimmer-2025-voice-patient},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-28. https://www.mecfsatlas.com/evidence/brimmer-2025-voice-patient
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