Ware, N C · Culture, medicine and psychiatry · 1999 · DOI
This study looked at how ME/CFS affects people's social lives by collecting personal stories from patients. The researchers found that ME/CFS can push people to the margins of their social worlds through processes like losing roles, being doubted or not believed, becoming isolated, and losing opportunities. However, patients also fight back and try to stay connected to their communities. The study shows that people's place in society moves back and forth depending on whether these isolating forces or connection efforts are stronger at any given time.
This study illuminates the social and psychological burden of ME/CFS beyond physical symptoms, highlighting how the condition systematically excludes patients from social participation. Understanding these marginalization processes is crucial for developing holistic support strategies and may help clinicians and communities better recognize and counteract the social isolation ME/CFS patients experience. The framework validates patients' experiences of being disbelieved and disconnected as part of the illness's social impact.
This study does not establish the prevalence or severity of social marginalization across the ME/CFS population, as it is based on retrospective narratives from a limited sample. It does not prove causality regarding which factors most strongly drive marginalization, nor does it test whether specific interventions targeting these processes improve outcomes. The findings are conceptual and descriptive rather than quantitative, and retrospective accounts may be subject to recall bias and narrative reconstruction.
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
Ware, N C (1999). Toward a model of social course in chronic illness: the example of chronic fatigue syndrome.. Culture, medicine and psychiatry. https://doi.org/10.1023/a:1005577823045
BibTeX
@article{mecfsatlas-ware-1999-toward-model,
author = {Ware, N C},
title = {Toward a model of social course in chronic illness: the example of chronic fatigue syndrome.},
journal = {Culture, medicine and psychiatry},
year = {1999},
doi = {10.1023/a:1005577823045},
note = {PubMed: 10572737},
url = {https://www.mecfsatlas.com/evidence/ware-1999-toward-model},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-29. https://www.mecfsatlas.com/evidence/ware-1999-toward-model
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