E3 PreliminaryPreliminaryPEM unclearCross-SectionalPeer-reviewedMachine draft
Working with uncertainty: A grounded theory study of health-care professionals' experiences of working with children and adolescents with chronic fatigue syndrome.
Marks, Megan R, Huws, Jaci C, Whitehead, Liz · Journal of health psychology · 2016 · DOI
Quick Summary
This study interviewed 10 healthcare professionals who treat children and teenagers with ME/CFS to understand how they approach the condition. Because ME/CFS is not yet fully understood scientifically, doctors often rely on their past experiences to decide how to treat young patients. What doctors believe about ME/CFS can affect the labels they give patients and what treatments they recommend.
Why It Matters
This research highlights a critical gap in healthcare: the lack of clear biomedical understanding of ME/CFS means young patients may receive inconsistent diagnoses and treatments depending on their clinician's beliefs and experiences. Understanding healthcare providers' perspectives is essential for improving clinical care pathways and ensuring children with ME/CFS receive evidence-based, consistent management.
Observed Findings
- Healthcare professionals use previous clinical experiences to interpret and make sense of ME/CFS due to unclear empirical understanding.
- Clinicians' individual conceptualizations of ME/CFS influence the diagnostic labels and clinical language they apply to young patients.
- The lack of consensus on ME/CFS definition and etiology creates variability in clinical practice approaches.
- Healthcare professionals acknowledge working 'with uncertainty' as a defining feature of their clinical experience with this population.
Inferred Conclusions
- Improving clarity around ME/CFS pathophysiology and diagnostic criteria could reduce clinician uncertainty and variability in care.
- Clinician education and evidence-based guidelines are needed to ensure consistent and appropriate labeling and treatment of young people with ME/CFS.
- The way healthcare professionals conceptualize ME/CFS has direct implications for the clinical experiences and outcomes of affected children and adolescents.
Remaining Questions
- What specific diagnostic labels and interventions do different clinicians assign to the same clinical presentations, and how do these differ from evidence-based standards?
- How does clinician uncertainty about ME/CFS affect patient outcomes, satisfaction, and help-seeking behavior in young people?
What This Study Does Not Prove
This study does not prove what causes ME/CFS or establish definitive diagnostic criteria. It also does not demonstrate that clinicians' uncertainty actually leads to worse patient outcomes—it only explores how uncertainty influences clinical thinking and decision-making. The findings reflect the views of 10 professionals and may not represent all healthcare settings or countries.
Tags
Phenotype:Pediatric
Method Flag:Small SampleExploratory Only
Metadata
- DOI
- 10.1177/1359105315583367
- PMID
- 25957226
- Review status
- Machine draft
- Evidence level
- Early hypothesis, preprint, editorial, or weak support
- Last updated
- 10 April 2026
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 →
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