Gilje, Ann Marit, Söderlund, Atle, Malterud, Kirsti · Patient education and counseling · 2008 · DOI
This study asked 12 ME/CFS patients about their experiences with doctors and healthcare. Patients reported that doctors often didn't believe them, didn't listen carefully, or treated them dismissively. Many felt that doctors blamed their symptoms on psychological causes or didn't take them seriously, which was sometimes as painful as the illness itself.
This study documents the substantial psychosocial burden of medical dismissal and validates patient experiences of healthcare failure in ME/CFS. It demonstrates that physician attitudes and knowledge gaps directly harm patients, supporting the need for improved provider education, guideline adherence (particularly NICE recommendations for shared decision-making), and structural changes in how ME/CFS is approached clinically.
This study does not establish the prevalence or population-level frequency of these care obstructions, nor does it quantify their impact on health outcomes. The purposeful sampling from a patient organization may enrich qualitative insight but cannot determine whether these experiences are representative of all ME/CFS patients or describe causal mechanisms of clinical failure.
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
Gilje, Ann Marit, Söderlund, Atle, & Malterud, Kirsti (2008). Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)--a case study.. Patient education and counseling. https://doi.org/10.1016/j.pec.2008.04.001
BibTeX
@article{mecfsatlas-gilje-2008-obstructions-quality,
author = {Gilje, Ann Marit and Söderlund, Atle and Malterud, Kirsti},
title = {Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)--a case study.},
journal = {Patient education and counseling},
year = {2008},
doi = {10.1016/j.pec.2008.04.001},
note = {PubMed: 18486415},
url = {https://www.mecfsatlas.com/evidence/gilje-2008-obstructions-quality},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-29. https://www.mecfsatlas.com/evidence/gilje-2008-obstructions-quality
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