Taylor, Renee R · The American journal of occupational therapy : official publication of the American Occupational Therapy Association · 2005 · DOI
This study asked 47 people with ME/CFS about their disability experiences and found that the most common way doctors and society think about disability doesn't fully explain what ME/CFS patients go through. Many participants felt their condition wasn't believed or understood, experienced real physical and cognitive problems from the illness itself, and didn't feel connected to the broader disability community. The researchers concluded that ME/CFS—as an invisible disability with variable, complex impairments—requires a more nuanced approach than typical disability frameworks offer.
This study highlights a critical gap: standard disability frameworks may not adequately address the unique challenges faced by people with ME/CFS, particularly around lack of recognition and misunderstanding from healthcare providers and society. Understanding these gaps is essential for developing healthcare and social support systems that truly meet ME/CFS patients' needs, rather than forcing their experiences into ill-fitting models.
This study does not quantify how many ME/CFS patients experience these themes or how prevalent each is in the broader ME/CFS population. It also does not establish whether the social model's limitations are unique to ME/CFS or apply to other invisible/fluctuating conditions. The study describes participants' perspectives but does not evaluate interventions or prove that any particular policy change would improve 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
Taylor, Renee R (2005). Can the social model explain all of disability experience? Perspectives of persons with chronic fatigue syndrome.. The American journal of occupational therapy : official publication of the American Occupational Therapy Association. https://doi.org/10.5014/ajot.59.5.497
BibTeX
@article{mecfsatlas-taylor-2005-can-social,
author = {Taylor, Renee R},
title = {Can the social model explain all of disability experience? Perspectives of persons with chronic fatigue syndrome.},
journal = {The American journal of occupational therapy : official publication of the American Occupational Therapy Association},
year = {2005},
doi = {10.5014/ajot.59.5.497},
note = {PubMed: 16268016},
url = {https://www.mecfsatlas.com/evidence/taylor-2005-can-social},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-27. https://www.mecfsatlas.com/evidence/taylor-2005-can-social
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