de Boer, Marjolein Lotte · Sociology of health & illness · 2021 · DOI
This study looked at how ME/CFS patients were involved in advising the Dutch Health Council between 2013-2018. The researchers found that patient representatives mainly shared medical/scientific knowledge about ME/CFS as a physical illness, avoiding discussion of psychological factors. While this approach helped patients be taken more seriously, it may have actually limited what kinds of knowledge and experiences patients could contribute, and it might reinforce incomplete understandings of the disease.
This study highlights a paradox in patient advocacy: while emphasizing the physical nature of ME/CFS is necessary to counter stigma, it may inadvertently narrow the types of knowledge patients can legitimately contribute to research and policy decisions. Understanding this tension is crucial for creating truly inclusive participatory processes that honor the full complexity of patient experience and expertise.
This discourse analysis does not prove that biomedical framing by patient representatives was harmful overall or that it failed to improve ME/CFS policy outcomes. The study examines what was said in advisory processes but does not measure whether this participation actually changed health policy, research funding, or clinical practice. It also does not assess whether patients themselves felt their participation was constrained or meaningful.
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
de Boer, Marjolein Lotte (2021). Epistemic in/justice in patient participation. A discourse analysis of the Dutch ME/CFS Health Council advisory process.. Sociology of health & illness. https://doi.org/10.1111/1467-9566.13301
BibTeX
@article{mecfsatlas-de-boer-2021-epistemic-justice,
author = {de Boer, Marjolein Lotte},
title = {Epistemic in/justice in patient participation. A discourse analysis of the Dutch ME/CFS Health Council advisory process.},
journal = {Sociology of health & illness},
year = {2021},
doi = {10.1111/1467-9566.13301},
note = {PubMed: 34137042},
url = {https://www.mecfsatlas.com/evidence/de-boer-2021-epistemic-justice},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-26. https://www.mecfsatlas.com/evidence/de-boer-2021-epistemic-justice
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