Fønnebø, Vinjar, Drageset, Brit J, Salamonsen, Anita · Global advances in health and medicine · 2012 · DOI
This study reviewed detailed case reports from a registry that documented the most severe cases of ME/CFS—patients whose illness followed unusual or particularly debilitating courses. The researchers examined these exceptional cases to better understand the range and severity of disease progression in ME/CFS. By studying the worst-case scenarios, the team aimed to identify patterns that might help doctors recognize and support the most severely affected patients.
Understanding the most severe presentations of ME/CFS is crucial for improving recognition and clinical management of the worst-affected patients. This registry approach captures real-world disease experiences that might be underrepresented in clinical trials, providing valuable insight into the full spectrum of ME/CFS severity.
This study does not prove what causes severe ME/CFS or establish the frequency of extreme cases in the overall ME/CFS population. Registry-based observations cannot determine whether particular factors led to severe outcomes versus being consequences of severe 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
Fønnebø, Vinjar, Drageset, Brit J, & Salamonsen, Anita (2012). Worst Cases Reported to the NAFKAM International Registry of Exceptional Courses of Disease.. Global advances in health and medicine. https://doi.org/10.7453/gahmj.2012.1.1.008
BibTeX
@article{mecfsatlas-fnneb-2012-worst-cases,
author = {Fønnebø, Vinjar and Drageset, Brit J and Salamonsen, Anita},
title = {Worst Cases Reported to the NAFKAM International Registry of Exceptional Courses of Disease.},
journal = {Global advances in health and medicine},
year = {2012},
doi = {10.7453/gahmj.2012.1.1.008},
note = {PubMed: 24278799},
url = {https://www.mecfsatlas.com/evidence/fnneb-2012-worst-cases},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-28. https://www.mecfsatlas.com/evidence/fnneb-2012-worst-cases
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