Habermann-Horstmeier, Lotte, Horstmeier, Lukas Maximilian · Gesundheitswesen (Bundesverband der Arzte des Offentlichen Gesundheitsdienstes (Germany)) · 2024 · DOI
This German study surveyed 674 ME/CFS patients to understand how they navigate the healthcare system and how long diagnosis takes. Patients saw an average of 6-15 different doctors from various specialties before getting diagnosed, with the diagnostic journey taking up to 10 years for most people. The study found that doctors often refer patients around based on individual symptoms rather than recognizing ME/CFS as a whole condition, highlighting the urgent need for better training about ME/CFS across all medical fields.
This research documents the substantial diagnostic delays and fragmented care pathways ME/CFS patients experience in Germany, quantifying a problem long recognized by patients and advocates. By identifying that physicians lack knowledge about ME/CFS across all specialties, the study builds a case for urgently needed medical education reforms that could reduce unnecessary testing and improve early diagnosis.
This study does not establish causation regarding why diagnostic delays occur or prove that medical education deficits are the sole cause of referral patterns; it only documents what happened retrospectively through patient report. The self-selected snowball sampling may not represent the full population of German ME/CFS patients, and the study cannot determine whether alternative diagnostic approaches would have led to faster or more accurate diagnosis.
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
Habermann-Horstmeier, Lotte & Horstmeier, Lukas Maximilian (2024). [What Medical Specialties do ME/CFS Sufferers Consult? A Public Health Study on the need for Better Medical Education and Training].. Gesundheitswesen (Bundesverband der Arzte des Offentlichen Gesundheitsdienstes (Germany)). https://doi.org/10.1055/a-2323-9507
BibTeX
@article{mecfsatlas-habermann-horstmeier-2024-what-medical,
author = {Habermann-Horstmeier, Lotte and Horstmeier, Lukas Maximilian},
title = {[What Medical Specialties do ME/CFS Sufferers Consult? A Public Health Study on the need for Better Medical Education and Training].},
journal = {Gesundheitswesen (Bundesverband der Arzte des Offentlichen Gesundheitsdienstes (Germany))},
year = {2024},
doi = {10.1055/a-2323-9507},
note = {PubMed: 38729209},
url = {https://www.mecfsatlas.com/evidence/habermann-horstmeier-2024-what-medical},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-30. https://www.mecfsatlas.com/evidence/habermann-horstmeier-2024-what-medical
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