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

Laura Froehlich,Uta Behrends,Manuel Thoma,Daniel B R Hattesohl,Leonard A Jason,Carmen Scheibenbogen

doi:10.3390/medicina57070646

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.

Highlights

The chronic illness Myalgic Encephalomyelitis or Chronic Fatigue Syndrome is characterized by severe symptoms including profound exhaustion, muscle weakness and fatigability, pain, cognitive dysfunction, sleep disturbance, flu-like symptoms, and orthostatic intolerance [1,2,3]
As Cotler, Holtzman, Dudun, and Jason [33] showed that a duration of Post-Exertional Malaise (PEM) longer than 14 h differentiated Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) from other chronic diseases, we excluded participants whose responses to the item “If you feel worse after activities, how long does this last” ranged between “1 h or less” and “11–13 h”; (n = 72)
The final sample consisted of 499 participants with self-reported ME/CFS who fulfilled the Canadian Consensus Criteria [32] and indicated experiencing post-exertional malaise of 14 h or longer [33]

Summary

Introduction

The chronic illness Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (we will use the acronym ME/CFS) is characterized by severe symptoms including profound exhaustion, muscle weakness and fatigability, pain, cognitive dysfunction, sleep disturbance, flu-like symptoms, and orthostatic intolerance [1,2,3]. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a severe illness with the hallmark symptom of Post-Exertional Malaise (PEM). 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. 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 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

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Conclusion