Terman, Julia M, Awsumb, Jessica M, Cotler, Joseph et al. · Journal of health psychology · 2020 · DOI
This study measured how much stigma (negative judgments and social shame) people with ME/CFS experience. Over 550 people with ME/CFS from around the world filled out a survey designed to assess stigma, feelings of isolation, and concerns about disclosing their illness. The researchers found that people with ME/CFS reported high levels of stigma and struggled with whether to tell others about their condition.
Understanding and quantifying stigma in ME/CFS is critical because social stigma significantly impacts quality of life, healthcare interactions, and willingness to seek care. This validated measurement tool enables researchers to assess stigma systematically and helps clinicians recognize the psychological burden patients experience beyond physical symptoms. Documenting the widespread nature of stigma strengthens advocacy efforts and highlights the need for public education.
This study does not establish causal relationships between stigma and health outcomes, nor does it identify specific sources of stigma (e.g., healthcare providers vs. family vs. society). The cross-sectional design means we cannot determine whether stigma precedes symptom onset or develops in response to illness. It also does not demonstrate that reducing stigma will improve clinical 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
Terman, Julia M, Awsumb, Jessica M, Cotler, Joseph, & Jason, Leonard A (2020). Confirmatory factor analysis of a myalgic encephalomyelitis and chronic fatigue syndrome stigma scale.. Journal of health psychology. https://doi.org/10.1177/1359105318796906
BibTeX
@article{mecfsatlas-terman-2020-confirmatory-factor,
author = {Terman, Julia M and Awsumb, Jessica M and Cotler, Joseph and Jason, Leonard A},
title = {Confirmatory factor analysis of a myalgic encephalomyelitis and chronic fatigue syndrome stigma scale.},
journal = {Journal of health psychology},
year = {2020},
doi = {10.1177/1359105318796906},
note = {PubMed: 30183363},
url = {https://www.mecfsatlas.com/evidence/terman-2020-confirmatory-factor},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-29. https://www.mecfsatlas.com/evidence/terman-2020-confirmatory-factor
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