Winger, Anette, Ekstedt, Mirjam, Wyller, Vegard B et al. · Journal of clinical nursing · 2014 · DOI
This study listened to 18 teenagers with ME/CFS about what life is really like living with this illness. The teenagers described feeling left behind by the world, isolated from friends and school, struggling to be seen and understood by others, and dealing with a body that doesn't work the way they expect. Despite these challenges, most young people expressed hope for improvement in the future.
This study amplifies often-unheard adolescent voices about ME/CFS, highlighting the profound psychosocial impacts beyond physical symptoms—particularly social isolation and identity disruption during a critical developmental period. Understanding these experiences is essential for developing person-centered care models and informing healthcare professionals about the holistic needs of young ME/CFS patients.
This qualitative study does not establish prevalence rates, measure biomarkers, define disease mechanisms, or prove causation for any observed psychological or social outcomes. The findings reflect subjective experiences and may not be generalizable to all adolescents with ME/CFS, particularly those in different cultural or healthcare contexts.
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
Winger, Anette, Ekstedt, Mirjam, Wyller, Vegard B, & Helseth, Sølvi (2014). 'Sometimes it feels as if the world goes on without me': adolescents' experiences of living with chronic fatigue syndrome.. Journal of clinical nursing. https://doi.org/10.1111/jocn.12522
BibTeX
@article{mecfsatlas-winger-2014-sometimes-feels,
author = {Winger, Anette and Ekstedt, Mirjam and Wyller, Vegard B and Helseth, Sølvi},
title = {'Sometimes it feels as if the world goes on without me': adolescents' experiences of living with chronic fatigue syndrome.},
journal = {Journal of clinical nursing},
year = {2014},
doi = {10.1111/jocn.12522},
note = {PubMed: 24354631},
url = {https://www.mecfsatlas.com/evidence/winger-2014-sometimes-feels},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-29. https://www.mecfsatlas.com/evidence/winger-2014-sometimes-feels
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