Clarke, Juanne N, James, Susan · Social science & medicine (1982) · 2003 · DOI
This study explores how people with ME/CFS cope with the challenge that their illness is not universally accepted by doctors and society. Patients experience both the physical burden of the disease and the emotional strain of having their condition disputed or questioned. The research found that people with ME/CFS often develop new ways of understanding themselves and their identity as a way to cope with this lack of recognition.
This research validates a significant but often overlooked burden ME/CFS patients carry—the psychological and social impact of diagnostic uncertainty and medical controversy. Understanding how disputed diagnosis shapes patient identity and coping strategies can help clinicians recognize and address these psychosocial dimensions of care, and may inform patient advocacy for diagnostic clarity.
This observational study does not establish causal mechanisms or compare outcomes between ME/CFS patients and those with uncontested diagnoses. It does not prove that diagnostic dispute directly causes specific mental health outcomes, nor does it quantify how many patients experience identity disruption this way. The findings reflect the authors' interpretations of qualitative data and may not generalize to all ME/CFS populations.
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
Clarke, Juanne N & James, Susan (2003). The radicalized self: the impact on the self of the contested nature of the diagnosis of chronic fatigue syndrome.. Social science & medicine (1982). https://doi.org/10.1016/s0277-9536(02)00515-4
BibTeX
@article{mecfsatlas-clarke-2003-radicalized-self,
author = {Clarke, Juanne N and James, Susan},
title = {The radicalized self: the impact on the self of the contested nature of the diagnosis of chronic fatigue syndrome.},
journal = {Social science & medicine (1982)},
year = {2003},
doi = {10.1016/s0277-9536(02)00515-4},
note = {PubMed: 12927469},
url = {https://www.mecfsatlas.com/evidence/clarke-2003-radicalized-self},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-29. https://www.mecfsatlas.com/evidence/clarke-2003-radicalized-self
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