"At last, our voices have been acknowledged, our presence noticed, and we have gained credibility"
Switzerland has taken a significant step towards recognising and improving the health situation of individuals affected by Long Covid and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The new national strategy, a political signal of recognition, is the first of its kind in Europe.
The strategy, which was developed with the driving force of patient organisations, aims to provide free access to tests, therapies, and drugs for all affected individuals, including children and adolescents. This includes the use of off-label medications, as part of the action plans in Germany and Austria.
A joint effort of 13 organisations of affected individuals and relatives, the CDU/CSU parliamentary group, and initiatives such as the Deutsche Arbeitsgemeinschaft Selbsthilfegruppen e.V. (DAG SHG) which runs the INSEA program, are supporting the implementation of this strategy. The Federal Ministry of Health has endorsed a care guideline for Long Covid and ME/CFS as of April 2024, and state-level funding initiatives such as the Bavarian Post-COVID syndrome funding programs also contribute to the implementation.
About 70% of the nearly 500,000 affected people in Switzerland are women. The risk and costs of these medications should not be borne by the affected individuals themselves. Adequate support from social security institutions is a central concern in the implementation of the new national strategy.
The patient organisations ME/CFS Switzerland, the Swiss Society for ME & CFS, and Long Covid Switzerland have united to fight for a common goal and secure a national strategy. The formation of Long Covid Switzerland marked a milestone for the affected people, as it signified being heard, seen, and taken seriously. Long Covid Switzerland became the voice for a group of people often overlooked, serving as a point of contact for professionals and authorities.
The new strategy demands faster diagnostics and appropriate treatment based on the latest scientific findings. These competence centers should have targeted research programs to understand the course of the diseases and identify common patterns. The long-term goal is the establishment of competence centers for post-infectious diseases in the new national strategy.
Chantal Britt, a journalist and communications specialist, founded the patient organisation Long Covid Switzerland in March 2021 after experiencing persistent symptoms from Covid-19. Britt, a candidate for the Prix Courage Observer 2024, tirelessly advocates for people with Long Covid. In 2024, she received the Prix Courage des Beobachters for her work with Long Covid Switzerland.
Germany and Austria have action plans and research foci that are considered good examples. The new national strategy aims to improve the health situation of people with ME/CFS and Long Covid, as stated in Motion 24.4452. This is a much-needed development, not just for Switzerland, but for all affected individuals across Europe.
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