Exploring the potential role of the advanced nurse practitioner within a care path for patients with chronic fatigue syndrome.
Ryckeghem, Hannah, Delesie, Liesbeth, Tobback, Els et al. · Journal of advanced nursing · 2017 · DOI
Quick Summary
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.
Why It Matters
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.
Observed Findings
Patients and GPs both reported mixed, delayed, or uncertain diagnostic experiences with ME/CFS
Participants identified the absence of a single, trusted intermediary as a major barrier to appropriate care
Lack of interdisciplinary coordination was cited by both patients and healthcare providers
Participants stressed the need for timely, reliable education and information about ME/CFS
Both groups emphasized the importance of building trust in the patient-provider relationship
Inferred Conclusions
Current care pathways for ME/CFS in the studied region have significant coordination and communication gaps
An advanced nurse practitioner could serve as a central coordinator to bridge communication between patients and multidisciplinary providers
Structured, knowledgeable intermediation could improve patient access to appropriate care and reduce inappropriate treatments
Education and trust-building are essential components of effective ME/CFS management
Remaining Questions
Would implementing an advanced nurse practitioner role actually improve clinical outcomes, treatment appropriateness, or patient satisfaction in ME/CFS care?
What This Study Does Not Prove
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 →