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

Abstract

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.