Fruhstorfer, Clark, Kelly, Michaela, Spiegel, Laura et al. · Canadian family physician Medecin de famille canadien · 2024 · DOI
This Canadian study interviewed 16 people with chronic conditions like ME/CFS and fibromyalgia who had requested medical assistance in dying (MAID) because their suffering was not relieved by available treatments. Participants reported that the approval process gave them a sense of control and validation of their illness, even if they didn't immediately use it. Many found value in simply being listened to by researchers who took their experiences seriously.
This study provides insight into the lived experiences of ME/CFS patients facing severe, treatment-resistant suffering and explores how they navigate end-of-life care options in a jurisdiction permitting MAID. The findings may help clinicians better understand the psychosocial dimensions of severe ME/CFS and improve compassionate care for patients with profound disability and suffering.
This study does not establish the prevalence of MAID requests among ME/CFS patients or prove that MAID approval is beneficial for mental health outcomes. It does not compare outcomes between those approved for MAID and those denied, nor does it address whether improved symptom management could reduce requests for medical assistance in dying.
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
Fruhstorfer, Clark, Kelly, Michaela, Spiegel, Laura, Baylis, Peter J, Dembo, Justine, & Wiebe, Ellen (2024). Patient experiences with requests for medical assistance in dying: Perspectives of those with complex chronic conditions.. Canadian family physician Medecin de famille canadien. https://doi.org/10.46747/cfp.700141
BibTeX
@article{mecfsatlas-fruhstorfer-2024-patient-experiences,
author = {Fruhstorfer, Clark and Kelly, Michaela and Spiegel, Laura and Baylis, Peter J and Dembo, Justine and Wiebe, Ellen},
title = {Patient experiences with requests for medical assistance in dying: Perspectives of those with complex chronic conditions.},
journal = {Canadian family physician Medecin de famille canadien},
year = {2024},
doi = {10.46747/cfp.700141},
note = {PubMed: 38262757},
url = {https://www.mecfsatlas.com/evidence/fruhstorfer-2024-patient-experiences},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-28. https://www.mecfsatlas.com/evidence/fruhstorfer-2024-patient-experiences
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