Krabbe, Silje Helen, Bjorbækmo, Wenche Schrøder, Mengshoel, Anne Marit et al. · Nursing inquiry · 2024 · DOI
This study explored how young women experienced being severely ill with ME/CFS during their teenage years, looking back from a point where they had recovered or improved. Researchers interviewed 13 women aged 16-29 about their memories of being bedridden and isolated. The study found that patients often felt caught between wanting company and needing to be alone, experienced their bodies as fragile and unstable, endured long periods of darkness and isolation, and eventually had to make sense of these painful memories as they recovered.
Most ME/CFS research focuses on diagnosis and treatment mechanisms, but this study centers patient voices and emotional realities—particularly for young people whose critical developmental years were disrupted. Understanding the profound psychological and social impact of severe ME/CFS can help clinicians provide more compassionate care, validate patient experiences, and inform support systems for affected families.
This study does not establish the biological causes of ME/CFS or why some patients recover while others remain severely ill. It does not measure the prevalence or frequency of these experiences across all ME/CFS patients—only among those interviewed who had recovered or improved. The retrospective nature means memories may be influenced by current health status and time elapsed since illness.
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
Krabbe, Silje Helen, Bjorbækmo, Wenche Schrøder, Mengshoel, Anne Marit, Sveen, Unni, & Groven, Karen Synne (2024). A suffering body, hidden away from others: The experience of being long-term bedridden with severe myalgic encephalomyelitis/chronic fatigue syndrome in childhood and adolescence.. Nursing inquiry. https://doi.org/10.1111/nin.12625
BibTeX
@article{mecfsatlas-krabbe-2024-suffering-body,
author = {Krabbe, Silje Helen and Bjorbækmo, Wenche Schrøder and Mengshoel, Anne Marit and Sveen, Unni and Groven, Karen Synne},
title = {A suffering body, hidden away from others: The experience of being long-term bedridden with severe myalgic encephalomyelitis/chronic fatigue syndrome in childhood and adolescence.},
journal = {Nursing inquiry},
year = {2024},
doi = {10.1111/nin.12625},
note = {PubMed: 38280185},
url = {https://www.mecfsatlas.com/evidence/krabbe-2024-suffering-body},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-25. https://www.mecfsatlas.com/evidence/krabbe-2024-suffering-body
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