McDermott, C, Lynch, J, Leydon, G M · Family practice · 2011 · DOI
This study asked 20 newly referred ME/CFS patients what they hoped to gain from visiting a specialist service. Patients most wanted a clear diagnosis, better understanding of their illness, practical guidance on managing it, and hope for the future. Most patients felt uncertain about ME/CFS and wanted more information earlier in their illness journey, rather than waiting to see a specialist.
Understanding patient expectations and concerns about specialist care is essential for improving service delivery and designing effective patient education programs. This study highlights a critical gap in early illness support and information provision that may reduce patient distress and improve self-management outcomes during the diagnostic pathway.
This study does not establish what actually improves patient outcomes or whether specialist services meet these expressed hopes. It reflects patient expectations at one point in time and in one geographic region, so findings may not generalize to other populations or healthcare systems. The study cannot prove causation between unmet information needs and patient distress.
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
McDermott, C, Lynch, J, & Leydon, G M (2011). Patients' hopes and expectations of a specialist chronic fatigue syndrome/ME service: a qualitative study.. Family practice. https://doi.org/10.1093/fampra/cmr016
BibTeX
@article{mecfsatlas-mcdermott-2011-patients-hopes,
author = {McDermott, C and Lynch, J and Leydon, G M},
title = {Patients' hopes and expectations of a specialist chronic fatigue syndrome/ME service: a qualitative study.},
journal = {Family practice},
year = {2011},
doi = {10.1093/fampra/cmr016},
note = {PubMed: 21555341},
url = {https://www.mecfsatlas.com/evidence/mcdermott-2011-patients-hopes},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-30. https://www.mecfsatlas.com/evidence/mcdermott-2011-patients-hopes
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