Parslow, Roxanne, Patel, Aarti, Beasant, Lucy et al. · Archives of disease in childhood · 2015 · DOI
Researchers interviewed 25 children with ME/CFS to understand what matters most to them about their illness and lives. Children described four main areas that are affected: their symptoms (which change unpredictably), their ability to be physically active, their social life with friends and family, and their emotional well-being. The study found that support from both doctors and schools is really important in helping children manage their condition.
Most existing ME/CFS outcome measures were not designed with children's input and may miss what actually matters to them. This study directly centers children's voices in understanding their disease burden, providing essential evidence for developing better assessment tools that capture meaningful outcomes relevant to paediatric patients and their families.
This qualitative study does not quantify how common each outcome domain is, does not test whether the proposed conceptual model applies universally across all ME/CFS presentations, and does not establish causation—only that children perceive relationships between symptoms, activity, social life, and emotional health. The findings reflect the perspectives of interviewed children and may not represent all paediatric ME/CFS populations.
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
Parslow, Roxanne, Patel, Aarti, Beasant, Lucy, Haywood, Kirstie, Johnson, Debbie, & Crawley, Esther (2015). What matters to children with CFS/ME? A conceptual model as the first stage in developing a PROM.. Archives of disease in childhood. https://doi.org/10.1136/archdischild-2015-308831
BibTeX
@article{mecfsatlas-parslow-2015-what-matters,
author = {Parslow, Roxanne and Patel, Aarti and Beasant, Lucy and Haywood, Kirstie and Johnson, Debbie and Crawley, Esther},
title = {What matters to children with CFS/ME? A conceptual model as the first stage in developing a PROM.},
journal = {Archives of disease in childhood},
year = {2015},
doi = {10.1136/archdischild-2015-308831},
note = {PubMed: 26453575},
url = {https://www.mecfsatlas.com/evidence/parslow-2015-what-matters},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-29. https://www.mecfsatlas.com/evidence/parslow-2015-what-matters
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