Murray, Rebecca, Turner, Lynda · Chronic illness · 2023 · DOI
This study looked at how ME/CFS affects how people see themselves and their identity. Researchers created a private Facebook group with 22 people who have ME/CFS and asked them to share their experiences. They found that supportive communities—whether online or with understanding people—help patients develop a stronger sense of self that isn't defined solely by illness or shame.
Identity disruption is a significant but often overlooked aspect of ME/CFS experience. This research validates that supportive communities—both online and in-person—can help patients reconstruct meaningful identities and may improve psychological wellbeing. The findings also offer health professionals and families actionable insight into how their approach affects patients' sense of self.
This study does not prove that online communities cure or treat ME/CFS symptoms, nor does it establish causation between community participation and clinical outcomes. As a small qualitative study, findings may not generalize to all ME/CFS patients, and the research cannot determine whether people with stronger identities have better health outcomes or vice versa.
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
Murray, Rebecca & Turner, Lynda (2023). Using Communities of Practice Theory to Understand the Crisis of Identity in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME).. Chronic illness. https://doi.org/10.1177/17423953211064989
BibTeX
@article{mecfsatlas-murray-2023-using-communities,
author = {Murray, Rebecca and Turner, Lynda},
title = {Using Communities of Practice Theory to Understand the Crisis of Identity in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME).},
journal = {Chronic illness},
year = {2023},
doi = {10.1177/17423953211064989},
note = {PubMed: 34866419},
url = {https://www.mecfsatlas.com/evidence/murray-2023-using-communities},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-28. https://www.mecfsatlas.com/evidence/murray-2023-using-communities
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