Bakken, Anne Karen, Mengshoel, Anne Marit, Synnes, Oddgeir et al. · International journal of qualitative studies on health and well-being · 2023 · DOI
This study interviewed 14 people who had severe ME/CFS and recovered to learn how healing happened. Researchers found that patients experienced a major shift in how they thought about their illness—moving from feeling helpless and trapped by the disease to taking an active role in their own recovery. The study shows that changes in mindset and taking personal agency in healing were important parts of the recovery process.
Most ME/CFS research focuses on disease mechanisms, but this study provides rare insights into how some patients do recover and what psychological and conceptual shifts accompany that recovery. Understanding the role of mindset change and personal agency offers hope to patients and may inform patient-centered rehabilitation approaches.
This study does not prove that mindset change causes recovery—it only describes what recovered patients reported about their experiences. It cannot establish whether the narrative shift preceded and enabled recovery, or whether improving health allowed people to reframe their narratives. The study focuses only on recovered patients, so findings may not apply to people who remain ill or are still suffering.
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
Bakken, Anne Karen, Mengshoel, Anne Marit, Synnes, Oddgeir, & Strand, Elin Bolle (2023). Acquiring a new understanding of illness and agency: a narrative study of recovering from chronic fatigue syndrome.. International journal of qualitative studies on health and well-being. https://doi.org/10.1080/17482631.2023.2223420
BibTeX
@article{mecfsatlas-bakken-2023-acquiring-new,
author = {Bakken, Anne Karen and Mengshoel, Anne Marit and Synnes, Oddgeir and Strand, Elin Bolle},
title = {Acquiring a new understanding of illness and agency: a narrative study of recovering from chronic fatigue syndrome.},
journal = {International journal of qualitative studies on health and well-being},
year = {2023},
doi = {10.1080/17482631.2023.2223420},
note = {PubMed: 37307500},
url = {https://www.mecfsatlas.com/evidence/bakken-2023-acquiring-new},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-27. https://www.mecfsatlas.com/evidence/bakken-2023-acquiring-new
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