Ryckeghem, Hannah, Delesie, Liesbeth, Tobback, Els et al. · Journal of advanced nursing · 2017 · DOI
This study asked ME/CFS patients and their doctors in Belgium what they thought about their care. Both groups reported feeling isolated and unsupported—patients didn't know who to turn to for reliable information, and doctors weren't sure how to help. The researchers suggest that having a specialized nurse coordinator could improve communication, provide education, and help different healthcare providers work together better for ME/CFS patients.
ME/CFS patients often report feeling dismissed and struggling to access coordinated care—a finding this study validates through both patient and clinician perspectives. Identifying a specific gap (lack of central coordinator) and proposing a structural solution (advanced nurse practitioner role) offers practical insight into how healthcare systems might better serve this vulnerable population.
This study does not demonstrate that implementing an advanced nurse practitioner role actually improves patient outcomes or clinical recovery. It is qualitative and exploratory only; it reflects what participants said they needed, not what interventions would be effective or what causes ME/CFS. The findings are specific to the Belgian healthcare context and may not generalize to other regions or 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
Ryckeghem, Hannah, Delesie, Liesbeth, Tobback, Els, Lievens, Stefaan, Vogelaers, Dirk, & Mariman, An (2017). Exploring the potential role of the advanced nurse practitioner within a care path for patients with chronic fatigue syndrome.. Journal of advanced nursing. https://doi.org/10.1111/jan.13244
BibTeX
@article{mecfsatlas-ryckeghem-2017-exploring-potential,
author = {Ryckeghem, Hannah and Delesie, Liesbeth and Tobback, Els and Lievens, Stefaan and Vogelaers, Dirk and Mariman, An},
title = {Exploring the potential role of the advanced nurse practitioner within a care path for patients with chronic fatigue syndrome.},
journal = {Journal of advanced nursing},
year = {2017},
doi = {10.1111/jan.13244},
note = {PubMed: 28000331},
url = {https://www.mecfsatlas.com/evidence/ryckeghem-2017-exploring-potential},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-30. https://www.mecfsatlas.com/evidence/ryckeghem-2017-exploring-potential
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