Melby, Line, Nair, Roshan das · Health expectations : an international journal of public participation in health care and health policy · 2024 · DOI
This study interviewed 48 people (patients and family members) in Norway about their frustrations with healthcare for ME/CFS. Researchers found that patients struggle with four main problems: services that don't exist for their condition, services that aren't tailored to their individual needs, services that come too late to help, and services that are wrong for ME/CFS altogether. The study suggests that doctors' lack of knowledge about ME/CFS and sometimes disbelief in the condition itself are major reasons why patients feel let down by healthcare.
ME/CFS patients consistently report severe dissatisfaction with healthcare, yet little qualitative research has deeply explored why. Understanding patients' specific grievances—from absent services to inappropriate treatments—can inform healthcare system redesign and advocate for better provider training. This patient-centered study demonstrates the importance of patient involvement in developing appropriate care pathways, filling a critical gap in ME/CFS healthcare quality research.
This study does not prove that healthcare providers intentionally harm ME/CFS patients or that all providers disbelieve in the condition. It documents patient experiences and perceived barriers rather than establishing causation for systemic healthcare failures. The findings reflect Norwegian healthcare context and may not fully apply to other countries with different healthcare structures.
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
Melby, Line & Nair, Roshan das (2024). 'We have no services for you… so you have to make the best out of it': A qualitative study of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients' dissatisfaction with healthcare services.. Health expectations : an international journal of public participation in health care and health policy. https://doi.org/10.1111/hex.13900
BibTeX
@article{mecfsatlas-melby-2024-have-services,
author = {Melby, Line and Nair, Roshan das},
title = {'We have no services for you… so you have to make the best out of it': A qualitative study of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients' dissatisfaction with healthcare services.},
journal = {Health expectations : an international journal of public participation in health care and health policy},
year = {2024},
doi = {10.1111/hex.13900},
note = {PubMed: 37905602},
url = {https://www.mecfsatlas.com/evidence/melby-2024-have-services},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-29. https://www.mecfsatlas.com/evidence/melby-2024-have-services
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