Kielland, Anne, Liu, Jing, Jason, Leonard A · Journal of health psychology · 2023 · DOI
This study surveyed 660 people with ME/CFS in Norway to understand how different diagnostic criteria and symptoms affect their experiences with treatments and healthcare services. Most patients reported that available interventions had little benefit or made them feel worse. The researchers found that post-exertional malaise (a hallmark symptom where activity makes fatigue and other symptoms worse) was strongly linked to how patients tolerated different treatments, suggesting this symptom should be a key consideration when recommending interventions.
This study directly addresses gaps in evidence about which interventions are actually helpful or harmful from patients' perspectives, rather than relying solely on clinical assumptions. By highlighting post-exertional malaise as a key determinant of treatment tolerance, it provides empirical support for reconsidering current treatment approaches and developing safer, more personalized interventions for ME/CFS patients.
This study documents patient-perceived effects of interventions but does not establish objective clinical outcomes or prove causation—perceived benefit does not necessarily equal measurable physiological improvement. The cross-sectional design cannot determine whether interventions caused poor outcomes or whether patients with worse symptoms naturally rated them more negatively. Results are specific to Norway's healthcare context and may not generalize to other healthcare systems.
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
Kielland, Anne, Liu, Jing, & Jason, Leonard A (2023). Do diagnostic criteria for ME matter to patient experience with services and interventions? Key results from an online RDS survey targeting fatigue patients in Norway.. Journal of health psychology. https://doi.org/10.1177/13591053231169191
BibTeX
@article{mecfsatlas-kielland-2023-diagnostic-criteria,
author = {Kielland, Anne and Liu, Jing and Jason, Leonard A},
title = {Do diagnostic criteria for ME matter to patient experience with services and interventions? Key results from an online RDS survey targeting fatigue patients in Norway.},
journal = {Journal of health psychology},
year = {2023},
doi = {10.1177/13591053231169191},
note = {PubMed: 37114822},
url = {https://www.mecfsatlas.com/evidence/kielland-2023-diagnostic-criteria},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-30. https://www.mecfsatlas.com/evidence/kielland-2023-diagnostic-criteria
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