[Which areas of medical care do patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) see a need for improvement? Results of a ME/CFS study in comparison to the G-BA guidelines]

Abstract

Background People suffering from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are mostly dissatisfied with their medical care. Among other things, they criticize the lack of knowledge of physicians, the lack of support, and the physicians’ perception of those affected as “difficult patients.” The aim of this study was to analyze in more detail the suggestions made by ME/CFS patients for better care. Methods As part of an exploratory, predominantly qualitative written survey, 615 medically diagnosed ME/CFS patients in Germany (> 20 years; 526 women, 89 men) were asked about suggestions for improving their medical care. The questionnaire was structured analogously to a focused, standardized guided interview. The evaluation was carried out using a mixed methods approach with an embedded design and a focus on a qualitative content analysis according to Mayring. Finally, the results were compared with the new G‑BA guideline on the care of ME/CFS patients. Results For good care, the acceptance of ME/CFS as a somatic multisystem disease and—based on this —the training and further education of all physicians is of central importance. ME/CFS centers, interdisciplinary networking, and better medical remuneration for those treating them are needed. Changing course in dealing with the sick and their intensive support is necessary. In addition, mistakes of the past should be addressed. Conclusions In comparison to the currently valid G‑BA guideline, our study shows that from the perspective of those affected, the guideline can only be a first step towards better medical care, especially since it does not specify the medical basis on which ME/CFS should be treated. In addition, a patient-centered treatment concept is needed, developed together with those affected, which also includes intensive support measures.