Hartley, Gemma, Purrington, Jack · Chronic illness · 2024 · DOI
This study asked children with chronic fatigue syndrome (ME/CFS) and their parents about their experiences at a specialist clinic that treats young people with the condition. Most families felt the service helped them understand their illness better, learn useful strategies to manage their symptoms, and gradually increase their activity levels safely. However, some families had trouble accessing the service due to its location, appointment scheduling, and difficulty contacting staff.
Understanding the experiences of young ME/CFS patients and families with specialist services is crucial for improving paediatric care delivery and identifying barriers to accessing evidence-based support. This evaluation provides practical insights into what aspects of specialist services work well and where systems need improvement, helping guide better healthcare for one of the most common conditions affecting children's quality of life.
This study does not establish the long-term effectiveness of the service interventions, as it is a cross-sectional evaluation without follow-up data or comparison group. The high satisfaction rates may reflect responder bias, as families still engaged with the service may be more satisfied than those who dropped out. The reported activity increases are patient-reported perceptions rather than objectively measured outcomes.
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
Hartley, Gemma & Purrington, Jack (2024). Service users' and parents/carers' experiences of a paediatric chronic fatigue service: A service evaluation.. Chronic illness. https://doi.org/10.1177/17423953231178185
BibTeX
@article{mecfsatlas-hartley-2024-service-users,
author = {Hartley, Gemma and Purrington, Jack},
title = {Service users' and parents/carers' experiences of a paediatric chronic fatigue service: A service evaluation.},
journal = {Chronic illness},
year = {2024},
doi = {10.1177/17423953231178185},
note = {PubMed: 37231733},
url = {https://www.mecfsatlas.com/evidence/hartley-2024-service-users},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-29. https://www.mecfsatlas.com/evidence/hartley-2024-service-users
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