Sommerfelt, Kristian, Schei, Trude, Angelsen, Arild · Journal of clinical medicine · 2023 · DOI
This Norwegian study surveyed 491 patients with severe ME/CFS and their family caregivers to understand how the disease affects their daily lives and what support they receive. The researchers found that the most severely ill patients are often completely bedridden, unable to speak, and experience severe symptom flare-ups from even minimal activity or sensory stimulation. Many patients and caregivers reported that healthcare services were inadequate or sometimes made symptoms worse, though some found help from occupational therapists and family doctors useful.
This study addresses a critical gap in systematic knowledge about the most severely affected ME/CFS patients, who are often invisible in research and healthcare systems. It documents the inadequacy of current support structures and highlights that appropriate care from trained professionals is both needed and possible, informing policy and clinical practice. The findings underscore the urgent need for healthcare provider education and better support systems for both patients and family caregivers bearing extreme care burdens.
This study does not establish causal mechanisms of ME/CFS or prove why symptom exacerbation occurs with activity. It cannot determine whether healthcare deterioration is due to ME/CFS-inappropriate clinical approaches or other factors, nor can it generalize findings beyond Norway's healthcare context. The cross-sectional design prevents determination of whether inadequate services cause worse outcomes or simply correlate with more severe disease.
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
Sommerfelt, Kristian, Schei, Trude, & Angelsen, Arild (2023). Severe and Very Severe Myalgic Encephalopathy/Chronic Fatigue Syndrome ME/CFS in Norway: Symptom Burden and Access to Care.. Journal of clinical medicine. https://doi.org/10.3390/jcm12041487
BibTeX
@article{mecfsatlas-sommerfelt-2023-severe-very,
author = {Sommerfelt, Kristian and Schei, Trude and Angelsen, Arild},
title = {Severe and Very Severe Myalgic Encephalopathy/Chronic Fatigue Syndrome ME/CFS in Norway: Symptom Burden and Access to Care.},
journal = {Journal of clinical medicine},
year = {2023},
doi = {10.3390/jcm12041487},
note = {PubMed: 36836022},
url = {https://www.mecfsatlas.com/evidence/sommerfelt-2023-severe-very},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-30. https://www.mecfsatlas.com/evidence/sommerfelt-2023-severe-very
Contribute
Private, reviewed by a human. Not a public comment thread.