Baken, Don M, Ross, Kirsty J, Hodges, Lynette D et al. · Chronic illness · 2023 · DOI
This study looked at how caring for someone with ME/CFS affects family members and close caregivers across different life stages—parents of young people with ME/CFS, adult children caring for parents, and spouses. Researchers surveyed 36 carers about their experiences and found two major challenges: lack of knowledge about the condition and its wide-ranging impact on their lives. While many experiences were shared across all groups, carers of young people faced particular struggles with providing care without clear guidance, while carers of adults and spouses worried most about what the future would hold.
Understanding carer experiences at different life stages is essential for developing targeted support systems and healthcare policies. This research highlights that caregiving needs and challenges vary significantly depending on whether the person with ME/CFS is a child, adult child, or spouse, helping clinicians and support services tailor interventions appropriately. Recognition of the substantial burden on carers may also improve overall patient outcomes through better family-centered care approaches.
This study does not establish causation or quantify the prevalence of specific carer challenges across the ME/CFS population, as it used a small opportunistic sample rather than a representative population. It cannot determine whether observed differences are definitively caused by life stage versus other unmeasured factors. The cross-sectional design cannot track how individual carer experiences evolve over time within the same caregiving relationship.
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
Baken, Don M, Ross, Kirsty J, Hodges, Lynette D, & Batten, Lesley (2023). Experiences of carers of youth, adult children and spouses with ME/CFS.. Chronic illness. https://doi.org/10.1177/17423953221121696
BibTeX
@article{mecfsatlas-baken-2023-experiences-carers,
author = {Baken, Don M and Ross, Kirsty J and Hodges, Lynette D and Batten, Lesley},
title = {Experiences of carers of youth, adult children and spouses with ME/CFS.},
journal = {Chronic illness},
year = {2023},
doi = {10.1177/17423953221121696},
note = {PubMed: 36259126},
url = {https://www.mecfsatlas.com/evidence/baken-2023-experiences-carers},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-28. https://www.mecfsatlas.com/evidence/baken-2023-experiences-carers
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