Hieber, Hannah, Pricoco, Rafael, Gerrer, Katrin et al. · Journal of clinical medicine · 2024 · DOI
German researchers created a registry to collect detailed health information from ME/CFS patients across multiple medical centers. In their first group of 174 patients, they found that most had a viral illness before developing ME/CFS, with nearly half triggered by COVID-19. Patients reported severe fatigue and greatly reduced quality of life, with significant limitations in daily activities.
This registry addresses a critical need for standardized, longitudinal data collection in ME/CFS, enabling future discovery of diagnostic biomarkers and treatment options. The documentation of viral triggers in 92% of cases provides epidemiological insights relevant to understanding disease pathogenesis. By combining clinical data with biospecimens, this infrastructure supports translational research that could accelerate development of evidence-based therapeuties for a disease currently lacking specific treatments.
This registry does not establish causal relationships between viral infections and ME/CFS development—it documents associations in a cross-sectional pilot cohort. The study does not identify diagnostic markers or treatments, nor does it demonstrate that specialized tertiary center populations are representative of all ME/CFS patients. Longitudinal data are not yet presented, so disease trajectories and prognosis cannot be determined from this initial report.
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
Hieber, Hannah, Pricoco, Rafael, Gerrer, Katrin, Heindrich, Cornelia, Wiehler, Katharina, Mihatsch, Lorenz L, et al. (2024). The German Multicenter Registry for ME/CFS (MECFS-R).. Journal of clinical medicine. https://doi.org/10.3390/jcm13113168
BibTeX
@article{mecfsatlas-hieber-2024-german-multicenter,
author = {Hieber, Hannah and Pricoco, Rafael and Gerrer, Katrin and Heindrich, Cornelia and Wiehler, Katharina and Mihatsch, Lorenz L and Haegele, Matthias and Schindler, Daniela and Donath, Quirin and Christa, Catharina and Grabbe, Annika and Kircher, Alissa and Leone, Ariane and Mueller, Yvonne and Zietemann, Hannah and Freitag, Helma and Sotzny, Franziska and Warlitz, Cordula and Stojanov, Silvia and Hattesohl, Daniel B R and Hausruckinger, Anna and Mittelstrass, Kirstin and Scheibenbogen, Carmen and Behrends, Uta},
title = {The German Multicenter Registry for ME/CFS (MECFS-R).},
journal = {Journal of clinical medicine},
year = {2024},
doi = {10.3390/jcm13113168},
note = {PubMed: 38892879},
url = {https://www.mecfsatlas.com/evidence/hieber-2024-german-multicenter},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-26. https://www.mecfsatlas.com/evidence/hieber-2024-german-multicenter
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