Confirmatory factor analysis of a myalgic encephalomyelitis and chronic fatigue syndrome stigma scale.
Terman, Julia M, Awsumb, Jessica M, Cotler, Joseph et al. · Journal of health psychology · 2020 · DOI
Quick Summary
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.
Why It Matters
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.
Observed Findings
Participants reported high levels of stigma across the international sample.
Participants endorsed high levels of estrangement (feeling isolated or separated from others).
Participants expressed significant concern about disclosing their ME/CFS diagnosis.
The adapted stigma scale showed good internal consistency (reliability within factors).
Confirmatory factor analysis demonstrated acceptable model fit for the instrument's structure.
Inferred Conclusions
ME/CFS-related stigma is a substantial and measurable phenomenon affecting international patient populations.
The validated stigma scale can be used reliably in future research and clinical settings to assess this burden.
Stigma, estrangement, and disclosure concerns are interconnected dimensions of the ME/CFS patient experience that warrant clinical attention.
Remaining Questions
What are the specific sources and contexts of stigma that ME/CFS patients experience most acutely (healthcare settings, workplace, family, society)?
How does stigma change over the course of illness, and what factors predict variations in stigma levels among individuals?
What This Study Does Not Prove
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.