Donalek, Julie G · Nursing research · 2009 · DOI
This study interviewed 8 parents with ME/CFS and their family members to understand how the illness affects everyone at home. Families described struggling to get a diagnosis, dealing with changed roles and responsibilities, losing income, feeling isolated, and trying to maintain normal family life despite ongoing uncertainty about the illness.
ME/CFS profoundly impacts not just the patient but the entire family system. This study highlights the often-overlooked family burden—diagnostic struggles, role disruption, financial hardship, and social stigma—which informs more compassionate clinical care and family-centered support interventions.
This study does not quantify how many ME/CFS families experience these challenges or establish the prevalence of specific outcomes like depression or school absenteeism in children. It also does not prove that controversy surrounding ME/CFS diagnosis directly causes isolation, only that families perceive this connection.
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
Donalek, Julie G (2009). When a parent is chronically ill: chronic fatigue syndrome.. Nursing research. https://doi.org/10.1097/NNR.0b013e3181ac156f
BibTeX
@article{mecfsatlas-donalek-2009-when-parent,
author = {Donalek, Julie G},
title = {When a parent is chronically ill: chronic fatigue syndrome.},
journal = {Nursing research},
year = {2009},
doi = {10.1097/NNR.0b013e3181ac156f},
note = {PubMed: 19752673},
url = {https://www.mecfsatlas.com/evidence/donalek-2009-when-parent},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-28. https://www.mecfsatlas.com/evidence/donalek-2009-when-parent
Contribute
Private, reviewed by a human. Not a public comment thread.