The aim of the roundtable was to bring together patient organizations, representatives of the healthcare system and social insurance companies as well as research institutions. Participants included representatives from the Swiss ME/CFS Society, the ME/CFS Switzerland Association, Long COVID Switzerland, the FMH, the FOPH and the pharmaceutical company Gilead.
The focus was on developing proposals for improving the diagnosis, treatment and social security of those affected. By networking stakeholders, the aim is to join forces and improve care structures.
Topics and challenges
health care
There is a lack of specialized treatment centers for ME/CFS and Long COVID in Switzerland. Current care is far from sufficient to meet the needs of those affected. Many patients have to make long journeys to the few specialists available, which is often not possible due to their physical limitations. In addition, the diseases are hardly addressed in medical training, and the social stigmatization as "psychosomatic" contributes to recommendation of wrong therapeutic approaches, such as overly intensive rehabilitation.
Demands of those affected: A national strategy, contact points (centers, rehab clinics), a task force and comprehensive training should improve the care situation. Greater education and awareness of ME/CFS and Long COVID are also required.
social insurances
Support from the disability insurance (IV) poses a major challenge, as many of those affected either do not receive any benefits or are not treated appropriately during the assessment. Homebound patients are often excluded from IV benefits and the assessments take too little account of the state of health of those affected. A lack of understanding and classification as a mental illness further exacerbate the problems.
Demands: Binding processes for quality assurance in assessments, standardized documentation and the involvement of experts for ME/CFS and Long COVID in the assessment process. Furthermore, experts should take into account specific diagnostic criteria such as PEM (Post-Exertional Malaise).
research
In Switzerland, there is hardly any reliable data on ME/CFS and Long COVID, which makes it difficult to develop well-founded therapeutic approaches. There is a lack of specific funding for these post-infectious diseases and, in the case of Long COVID, research has so far focused primarily on acute COVID-19 disease. Many sufferers are forced to seek treatment approaches at their own expense and risk.
Demands: More funding for research and the establishment of a registry for the systematic recording of ME/CFS and Long COVID cases. National and international cooperation should be promoted and standards for diagnosis and research established.
Results and conclusion
The roundtable concluded with the consensus that a national strategy is needed to combat the challenges mentioned. There was agreement that competence centers, improved networking and a data register are decisive steps towards improving care and the social framework conditions. Measures should also be taken to advance research and provide better support for young female patients in particular.
Next steps
The participants decided to hold bilateral talks at a political level and with the Federal Office of Public Health and the FMH in order to further advance the concerns of those affected. A further exchange is planned for spring 2025.
This roundtable was a first step towards improving the supply situation and will hopefully pave the way for further measures.
