Awareness matchdays during the summer break
The league-free summer was no reason for us to take a break either. At the Kick-Racism tournament in Dresden and at the Breminale, we were present ourselves to collect donations and raise awareness about our illnesses. In addition, SC Weimar 1903 and FC Bad Liebenwerda organised charity match days in support of our work. The fan club “Eiserne Kirsch Kolonne” raised awareness about our illnesses during its summer festival. We would like to thank our allies for this solidarity! The civic engagement of healthy people is essential for our work, since we ourselves are usually too ill to do it. We are grateful for any further support. If you need input or materials for awareness or fundraising campaigns, do not hesitate to contact us!
Participation in the virtual exchange of the Research Decade against Post-Infectious Diseases with the BMFTR
We also took part, together with 15 other patient organisations, in a virtual exchange on the design of the Research Decade against post-infectious diseases on June 9th. Beforehand, we had filled in a questionnaire in order to present the most important points during the virtual exchange. In particular, we demanded the exclusion of any psychosomatic research. We also emphasised the importance of sufficient involvement of patient organisations in the final decision-making processes. This especially includes equal voting rights in the allocation of funding. In addition, the following points were especially important to us in our statement and in the questionnaire:
- Taking the international state of research into account and avoiding broad investments in treatments that are already being researched elsewhere
- Eligibility for funding also for private companies
- Enabling the funding of innovative approaches
- In line with the evidence, rehab clinics should not be entitled to apply for funding — contrary to the published funding guideline
- Inclusion of all clinical pictures (especially Post-Vac) and comorbidities (e.g. POTS, MCAS, etc.)
- Inclusion of the most severely affected patients in studies
- Research into medications to improve the quality of life of the most severely affected patients
- Special consideration of the situation of children and adolescents
- A nationwide awareness campaign
- Accelerated research and approval processes
- Regular and transparent communication from the BMFTR about the progress of the Research Decade
A detailed summary of the content of the exchange has been published, for example, by Fatigatio e. V. and the ME/CFS Research Foundation.
We see it as especially positive that funding for studies with a psychosomatic focus was excluded. We also regard the presence of seven patient organisations in the steering committees as a positive sign for the involvement of those affected in the Decade. Furthermore, it was assured that possibilities for including the most severely affected patients in the studies would be examined.
It was also promised that there will be further exchange formats and regular updates for patient organisations that are not represented in the steering committees. We consider this especially important in order to show transparency towards all those affected. We therefore look forward to the Research Decade with hope, while at the same time holding the BMFTR accountable for the statements it has made.