Parslow, Roxanne M, Anderson, Nina, Byrne, Danielle et al. · BMJ paediatrics open · 2018 · DOI
Researchers interviewed 21 teenagers with ME/CFS and their parents to understand how they experience fatigue and symptoms. All the teenagers described fatigue, good days and bad days, and getting worse after activity (called payback). However, each teenager's experience was different—some felt constantly tired while others had more variable symptoms, and the impact on their daily lives ranged from minor activity limitations to being mostly sedentary.
This study captures the lived experience of adolescents with ME/CFS directly from patients and families, highlighting that while fatigue and post-exertional payback are universal features, the individual presentation and impact varies widely. Understanding this heterogeneity is important for developing patient-centered assessment tools and tailoring management to individual presentations rather than assuming one-size-fits-all symptoms.
This qualitative study does not establish the biological mechanisms underlying fatigue, symptom fluctuation, or payback in ME/CFS. It cannot determine whether differences in symptom descriptions reflect true biological variation or differences in how adolescents articulate their experiences. The findings apply primarily to mild-to-moderately affected, non-housebound adolescents and may not generalize to severely affected patients or adults.
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 M, Anderson, Nina, Byrne, Danielle, Shaw, Alison, Haywood, Kirstie L, & Crawley, Esther (2018). Adolescent's descriptions of fatigue, fluctuation and payback in chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): interviews with adolescents and parents.. BMJ paediatrics open. https://doi.org/10.1136/bmjpo-2018-000281
BibTeX
@article{mecfsatlas-parslow-2018-adolescent-descriptions,
author = {Parslow, Roxanne M and Anderson, Nina and Byrne, Danielle and Shaw, Alison and Haywood, Kirstie L and Crawley, Esther},
title = {Adolescent's descriptions of fatigue, fluctuation and payback in chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): interviews with adolescents and parents.},
journal = {BMJ paediatrics open},
year = {2018},
doi = {10.1136/bmjpo-2018-000281},
note = {PubMed: 30613800},
url = {https://www.mecfsatlas.com/evidence/parslow-2018-adolescent-descriptions},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-26. https://www.mecfsatlas.com/evidence/parslow-2018-adolescent-descriptions
Contribute
Private, reviewed by a human. Not a public comment thread.