WE&ME News May 2024

WE&ME Foundation appeals to federal states to quickly establish competence centers for severely affected ME/CFS and Long Covid patientsThird stakeholder conference of the Ströck Foundation formulates clear appeal and presents new awareness campaign by

Vienna (OTS/LCG) - On the occasion of the third stakeholder conference, which took place on Friday under the leadership of former Minister of Health Rudolf Anschober and with 29 experts and representatives from affected institutions at the Ströck company premises in Vienna, the WE&ME Foundation, among other things, calls for the establishment of specialized competence centers for the thousands of severely affected ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and Long Covid patients.“For ME/CFS, Long Covid, and other PAIS diseases (Post Active Infection Syndrome), the healthcare system in Austria and throughout Europe does not yet offer the necessary treatment and therapy options and also shows significant gaps in the social security of those affected. It is therefore necessary to quickly establish structures, as well as information, further education, and specialization at all levels of the healthcare system, in order to enable good treatment for all those affected,” the appeal reads.The focus of the improvements must therefore be on the further education of general practitioners and assessors, especially in the area of diagnostics, as well as the establishment of competence centers with specifically trained doctors in the federal states. The participants of the third stakeholder conference call on the federal states to quickly make decisions in the state target controls to create suitable facilities for seriously ill people in the regions in a coordinated manner between health policy, social insurance carriers, hospitals, and doctors. They welcome the establishment of a reference center for scientific work and coordination by the Ministry of Health as an important first step.

As part of the overall third stakeholder round, which has proven to be a coordinating body for all affected and active participants, the Ströck Foundation also presented the first successes that could be achieved.“With the stakeholder conferences, we have created a place for the exchange and networking of all those affected, from self-organization to science, from the Ministry of Health to the health insurance fund and the pension insurance institution. This mutual information, regular exchange, and the creation of a strong network are the prerequisites for constructive cooperation so that good treatment for those affected is possible. As a foundation, we are experiencing increasing support from different social and medical areas, investing heavily in research ourselves, such as in cooperation with international experts like Akiko Iwasaki (Yale University) or Maureen R. Hanson (Cornell University) and in Austria, we have provided seed funding for the ME/CFS biobank at the MedUni Vienna, in order to have the necessary biosamples available. To strengthen basic research, we have launched the ME/CFS call together with the Viennese Science, Research, and Technology Fund (WWTF) and the City of Vienna, which is endowed with 600,000 euros in the first round. We now expect rapid further steps in implementing the necessary qualified treatment offerings for all those affected,” says Gerhard Ströck.Experts from the health insurance fund, the pension insurance institution, the Ministry of Health, the Ministry of Social Affairs, the MedUni Vienna, the Vienna Medical Association, the Vienna Economic Chamber, as well as from the City of Vienna, self-organization, the WE&ME Foundation, and several dedicated doctors are now involved in the stakeholder conference.Wiener Ärzteball is a new partner of the WE&ME FoundationThe Wiener Ärzteball, which has a fixed place in the cultural calendar of the Austrian capital, takes place every year on the last Saturday in January in the Vienna Hofburg and will be celebrated for the 73rd time in 2025. The traditional ball, which will take place next year on January 25, 2025, is a fixed institution of the Viennese ball season and known for its traditionally strong charitable character. The entire net proceeds of the Wiener Ärzteball go to a selected charitable initiative.

“A Dance for Life: A Charity Night for ME/CFS”

This year with the motto “A Dance for Life: A Charity Night for ME/CFS” for the WE&ME Foundation.Thus, the Wiener Ärzteball stands not only for an important social event in the ball calendar every year, but also for an important mission: the support of charitable purposes. Isabella Clara Heissenberger-Mass, the ball referent of the Wiener Ärzteball, emphasizes the special importance of charitable commitment, which has been a central pillar of this traditional event for many years: “The Wiener Ärzteball not only unites the medical community, but also the broader society in a night of solidarity and charity. I am proud that the entire net proceeds of our unique ball this year will go to the WE&ME Foundation, a remarkable initiative that is committed to researching ME/CFS and the well-being of those affected. ME/CFS is often an underestimated illness. The work of the WE&ME Foundation is therefore of immeasurable value for research and dealing with this complex disease, which unfortunately also affects children and adolescents, who are of particular concern to me as a pediatrician.”Johannes Steinhart, President of the Viennese Medical Association, particularly emphasizes the importance of the WE&ME Foundation in the research and support of people with ME/CFS: “The commitment to the health and well-being of our patients goes far beyond direct medical practice and is strengthened by important gatherings such as the Wiener Ärzteball. The Wiener Ärzteball stands for a strong charitable idea and we are proud to have chosen the WE&ME Foundation this year. Initiatives such as the WE&ME Foundation are of crucial importance in better understanding ME/CFS and supporting those affected as best as possible. With the Wiener Ärzteball, we not only bring this important topic into the halls of the Vienna Hofburg, but also onto the political stage.

“Attention for a little-researched illness: Campaign of the WE&ME Foundation explains ME/CFSIn a world where visible suffering is often in focus, invisible illnesses are frequently in the shadow of attention.

One of these invisible illnesses is ME/CFS, a severe neuro-immunological disease that affects the lives of those affected in a way that is hardly understandable for outsiders. Up to 100,000 people in this country are affected, with the number increasing due to Long Covid. The new campaign of the WE&ME Foundation raises awareness for this often overlooked illness and gives those affected a voice.The campaign, entitled “ME/CFS KEEPS YOU CAPTIVE,” was launched by the WE&ME Foundation in cooperation with Sebastian Kainz and his agency goodbye.agency pro bono. Its goal is to vividly depict the isolation and helplessness experienced by many ME/CFS patients and to encourage the public to engage with this often misunderstood illness.Powerful images that touchThe campaign motifs are as powerful as they are touching. They depict ME/CFS patients in a shadow realm of the illness, symbolized by hundreds of sheets or infinitely large patient rooms. These images are more than just illustrations – they are a visual manifesto for the invisible suffering experienced by millions of people worldwide.Multimedia presence for maximum reachThe versatility in presentation ensures a high impact for the campaign. The motifs are presented in various media formats, including films for TV and online, print ads, out-of-home media, and social media. This ensures that the message reaches everywhere people seek information and inspiration.A call for solidarity and willingness to actThe campaign is a catalyst for solidarity and willingness to act. The memorable motifs are intended to motivate viewers not only to inform themselves about the illness, but also to take concrete steps. This can range from empathetic engagement to donating for research and supporting those affected in their daily lives.Health Minister Johannes Rauch welcomes the commitment of the WE&ME Foundation and their new campaign: “We have a common goal: to improve the situation for people affected by ME/CFS. The campaign of the WE&ME Foundation makes an important contribution to this. It raises awareness for the situation of those affected – not only among the general public, but also among doctors and many other employees in the healthcare system.”