Mengshoel, Anne Marit, Helland, Ingrid Bergliot, Meeus, Mira et al. · International journal of qualitative studies on health and well-being · 2020 · DOI
This review looked at 16 European studies on non-drug treatments for ME/CFS, examining what actually helps patients and what matters most to them during treatment. Cognitive behavioral therapy (CBT) showed the most promise for reducing fatigue compared to no treatment, while rehabilitation and activity-pacing approaches showed mixed results. Importantly, patients felt most helped when their doctors truly recognized ME/CFS as a real illness and supported them, but they were often unsure what these treatments actually involved or why they were being recommended.
This study highlights a critical gap between what treatments are being offered for ME/CFS and what patients actually need or understand about them. By centering patient experiences and emphasizing the need for tailored, well-designed interventions, this review provides evidence that future ME/CFS treatments must be developed with patient input and clearer communication about what they involve and why they matter.
This review does not establish that these non-pharmacological treatments are definitively effective for ME/CFS, as the studies reviewed had significant methodological differences and inconsistent results. It cannot prove that CBT works through the mechanisms proposed, and mixed results for rehabilitation and activity-pacing mean we cannot conclude whether these approaches benefit or harm patients in the long term. The heterogeneity of studies prevents drawing definitive conclusions about which treatment works best for whom.
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
Mengshoel, Anne Marit, Helland, Ingrid Bergliot, Meeus, Mira, Castro-Marrero, Jesus, Pheby, Derek, & Bolle Strand, Elin (2020). Patients' experiences and effects of non-pharmacological treatment for myalgic encephalomyelitis/chronic fatigue syndrome - a scoping mixed methods review.. International journal of qualitative studies on health and well-being. https://doi.org/10.1080/17482631.2020.1764830
BibTeX
@article{mecfsatlas-mengshoel-2020-patients-experiences,
author = {Mengshoel, Anne Marit and Helland, Ingrid Bergliot and Meeus, Mira and Castro-Marrero, Jesus and Pheby, Derek and Bolle Strand, Elin},
title = {Patients' experiences and effects of non-pharmacological treatment for myalgic encephalomyelitis/chronic fatigue syndrome - a scoping mixed methods review.},
journal = {International journal of qualitative studies on health and well-being},
year = {2020},
doi = {10.1080/17482631.2020.1764830},
note = {PubMed: 32432991},
url = {https://www.mecfsatlas.com/evidence/mengshoel-2020-patients-experiences},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-28. https://www.mecfsatlas.com/evidence/mengshoel-2020-patients-experiences
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