Njølstad, Berit Widerøe, Mengshoel, Anne Marit, Sveen, Unni · Scandinavian journal of occupational therapy · 2019 · DOI
This study listened to seven teenagers with ME/CFS talk about how the illness changed their lives. Young people described feeling trapped in bodies that no longer worked the way they expected, missing out on activities with friends, and having to spend most of their time at home. However, the study also found that over time, many teens learned to accept their situation, adapted their daily activities, and rebuilt a sense of purpose and hope for the future.
This study provides important insights into the lived experience of young people with ME/CFS, highlighting both the profound social and developmental disruptions caused by the illness and the potential for resilience through acceptance and occupational adaptation. Understanding these experiences can help clinicians and support systems better address the psychological and social needs of adolescents with ME/CFS beyond purely biomedical interventions.
This qualitative study does not establish causation or test whether specific interventions improve outcomes. It cannot quantify how many adolescents follow each trajectory or demonstrate that occupational adaptation directly causes improved mental health. The small sample size of seven participants limits generalizability to all adolescents with ME/CFS.
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
Njølstad, Berit Widerøe, Mengshoel, Anne Marit, & Sveen, Unni (2019). 'It's like being a slave to your own body in a way': a qualitative study of adolescents with chronic fatigue syndrome.. Scandinavian journal of occupational therapy. https://doi.org/10.1080/11038128.2018.1455895
BibTeX
@article{mecfsatlas-njlstad-2019-like-being,
author = {Njølstad, Berit Widerøe and Mengshoel, Anne Marit and Sveen, Unni},
title = {'It's like being a slave to your own body in a way': a qualitative study of adolescents with chronic fatigue syndrome.},
journal = {Scandinavian journal of occupational therapy},
year = {2019},
doi = {10.1080/11038128.2018.1455895},
note = {PubMed: 29607759},
url = {https://www.mecfsatlas.com/evidence/njlstad-2019-like-being},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-28. https://www.mecfsatlas.com/evidence/njlstad-2019-like-being
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