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Article

Medical Care Situation of People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Germany

1
Research Cluster D2L2, FernUniversität in Hagen, 58097 Hagen, Germany
2
German Association for ME/CFS, 20146 Hamburg, Germany
3
Center for Community Research, DePaul University, Chicago, IL 60614, USA
4
Institute of Medical Immunology, Charité University Medicine Berlin, 10117 Berlin, Germany
5
Department of Pediatrics, School of Medicine, Technical University of Munich, 80333 München, Germany
*
Author to whom correspondence should be addressed.
Academic Editors: Derek FH Pheby, Kenneth J. Friedman, Modra Murovska and Pawel Zalewski
Medicina 2021, 57(7), 646; https://doi.org/10.3390/medicina57070646
Received: 5 May 2021 / Revised: 9 June 2021 / Accepted: 17 June 2021 / Published: 23 June 2021
(This article belongs to the Special Issue ME/CFS: Causes, Clinical Features and Diagnosis)
Background and Objective: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a severe illness with the hallmark symptom of Post-Exertional Malaise (PEM). Currently, no biomarkers or established diagnostic tests for ME/CFS exist. In Germany, it is estimated that over 300,000 people are affected by ME/CFS. Research from the United States and the UK shows that patients with ME/CFS are medically underserved, as they face barriers to medical care access and are dissatisfied with medical care. The first aim of the current research was to investigate whether patients with ME/CFS are medically underserved in Germany in terms of access to and satisfaction with medical care. Second, we aimed at providing a German-language version of the DePaul Symptom Questionnaire Short Form (DSQ-SF) as a tool for ME/CFS diagnostics and research in German-speaking countries. Materials and Methods: The current research conducted an online questionnaire study in Germany investigating the medical care situation of patients with ME/CFS. The questionnaire was completed by 499 participants who fulfilled the Canadian Consensus Criteria and reported PEM of 14 h or longer. Results: Participants frequently reported geographic and financial reasons for not using the available medical services. Furthermore, they reported low satisfaction with medical care by the physician they most frequently visited due to ME/CFS. The German version of the DSQ-SF showed good reliability, a one-factorial structure and construct validity, demonstrated by correlations with the SF-36 as a measure of functional status. Conclusions: Findings provide evidence that patients with ME/CFS in Germany are medically underserved. The German-language translation of the DSQ-SF provides a brief, reliable and valid instrument to assess ME/CFS symptoms to be used for research and clinical practice in German-speaking countries. Pathways to improve the medical care of patients with ME/CFS are discussed. View Full-Text
Keywords: Myalgic Encephalomyelitis; Chronic Fatigue Syndrome; DePaul Symptom Questionnaire; medical care Myalgic Encephalomyelitis; Chronic Fatigue Syndrome; DePaul Symptom Questionnaire; medical care
MDPI and ACS Style

Froehlich, L.; Hattesohl, D.B.R.; Jason, L.A.; Scheibenbogen, C.; Behrends, U.; Thoma, M. Medical Care Situation of People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Germany. Medicina 2021, 57, 646. https://doi.org/10.3390/medicina57070646

AMA Style

Froehlich L, Hattesohl DBR, Jason LA, Scheibenbogen C, Behrends U, Thoma M. Medical Care Situation of People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Germany. Medicina. 2021; 57(7):646. https://doi.org/10.3390/medicina57070646

Chicago/Turabian Style

Froehlich, Laura, Daniel B.R. Hattesohl, Leonard A. Jason, Carmen Scheibenbogen, Uta Behrends, and Manuel Thoma. 2021. "Medical Care Situation of People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Germany" Medicina 57, no. 7: 646. https://doi.org/10.3390/medicina57070646

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