[Experiences of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients with finding a doctor, rehabilitation and hospital stays, experts, and health and pension insurance]

Abstract

Background: There have already been indications in the past that patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are largely dissatisfied with the German healthcare and social system. Previous evaluations of the APAV-ME/CFS study had shown that they found the physician–patient relationship particularly problematic. The aim of this study was to analyze what other experiences they had had in the German healthcare and social system. Methods: As part of an exploratory qualitative survey, 482 medically diagnosed ME/CFS patients (> 20 years; 402 women, 80 men) were asked about their experiences within the German healthcare and social system. The qualitative part of the questionnaire was structured analogously to a focused, standardized guided interview. The written answers were evaluated using a qualitative content analysis according to Mayring, which was supplemented by quantitative data as part of a mixed methods approach. Results: Patients with ME/CFS reported that they had had predominantly negative experiences within the German healthcare and social system. This applies to all areas with which the ME/CFS sufferers had contact (e.g., general practitioners and clinics, rehabilitation facilities, healthcare and pension insurance companies, experts, courts and other authorities, and to a lesser extent physiotherapy and occupational therapy). In particular, the search for qualified physicians (97.5%) and rehabilitation measures for ME/CFS patients (93.8%) were rated predominantly negatively; 56.5% of the patients reported that their health had worsened as a result of rehabilitation or hospital stays, while for 36.6% it had remained the same. Conclusions: ME/CFS patients feel let down not only by the medical profession, but by the entire healthcare and social system. Many are now disappointed and resigned. From the perspective of those affected, their situation can only improve if ME/CFS is recognized by the medical profession as a neuroimmunological multisystem disease, so that adequate medical and social care for ME/CFS patients can then be established on this basis.