Long- and post-covid, post-vac and me/cfs: health care quality in Germany – Where are we?

Abstract Newly emerged Post- and Long-COVID and Post-Vac cases increased rapidly alongside ME/CFS during the COVID-19 pandemic. This revealed a deficit in health care structures in Germany adequately addressing these conditions. We conducted a survey investigating the perceived quality of the health care structures regarding Long- and Post-COVID, Post-Vac and ME/CFS to identify areas for improvement. A non-representative online survey was conducted between February 17th and March 9th, 2025 using LamaPoll. Participation was open for affected patients, their relatives and health care workers (HCW) in Germany. We assessed four main items: current care situation, support offers, barriers and quality of care. Responses of patients and relatives (P&R) were separately analysed from HCW as proportions of finished questionnaires. The 2,712 participants comprised of 98% P&R and 2% HCW or others. Of all P&R, 84% are dissatisfied with the received care, and 96% see only limited or no recent progression in health care structures. A major challenge for P&R are therapy costs, as those privately payed for seem to be most helpful (∼50%). Yet, P&R (∼60%) and HCW (54%) indicated the pacing strategy to be the most effective measure to prevent exacerbation. Long processing time and rejections of applications in the social insurance system are additional barriers. Lack in specialised health care providers and elongated waiting time for appointments are further issues, as well as lacking multidisciplinary collaboration. About 80% of all P&R claim their attending physician or therapist having a lack of knowledge on those four conditions. Despite ME/CFS being long known, health care structures in Germany, are still insufficient to provide high quality and timely care for these health issues. To develop a patient-oriented health care structure, major areas for improvement are education of HCW, cutting costs for patients and reducing outpatient waiting times and processing time of applications. Key messages • There is major room for improvement to provide high quality care for Covid long-haulers and related diseases. • The extent urges stakeholders to address these issues collaboratively.