Fennell, Patricia A, Dorr, Nancy, George, Shane S · Healthcare (Basel, Switzerland) · 2021 · DOI
This review article explores the deep suffering experienced by people with severe ME/CFS, looking at how losses, grief, stigma, and trauma from healthcare interactions affect their lives. The authors use a framework called the Fennell Four-Phase Model to help explain how chronic illness affects patients over time. The study emphasizes that healthcare providers need to understand and acknowledge the intense struggles that severely affected patients endure.
This study provides a structured framework for understanding why severely affected ME/CFS patients experience profound psychological and social suffering beyond their physical symptoms. By highlighting the role of stigma and healthcare provider responses, it advocates for more compassionate, trauma-informed clinical care and validates the experiences of patients who are often dismissed or disbelieved.
This review does not establish the prevalence or incidence of specific suffering elements in ME/CFS populations, nor does it compare suffering levels between ME/CFS and other chronic illnesses using quantitative data. It cannot definitively prove causation between healthcare stigma and patient trauma, as it synthesizes existing literature rather than conducting primary research with control groups.
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
Fennell, Patricia A, Dorr, Nancy, & George, Shane S (2021). Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected.. Healthcare (Basel, Switzerland). https://doi.org/10.3390/healthcare9050553
BibTeX
@article{mecfsatlas-fennell-2021-elements-suffering,
author = {Fennell, Patricia A and Dorr, Nancy and George, Shane S},
title = {Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected.},
journal = {Healthcare (Basel, Switzerland)},
year = {2021},
doi = {10.3390/healthcare9050553},
note = {PubMed: 34065069},
url = {https://www.mecfsatlas.com/evidence/fennell-2021-elements-suffering},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-28. https://www.mecfsatlas.com/evidence/fennell-2021-elements-suffering
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