ME/CFS research funding is this year's main charity theme of the IWC - International Women's Club in Frankfurt.
UPDATE 16. June 2023: The IWC presents a donation cheque for 15,310€ to the ME/CFS Research Foundation on the occasion of its annual "summer fest". A big thank you for this financial support of our work and the many good wishes goes out to the IWC members and friends!
"This great support helps us a lot and will hopefully also be taken up by other associations as a role model to support ME/CFS research through fundraising activities" said Joerg Heydecke on the occasion of the donation handover in Frankfurt.
This year's IWC "Donation Marathon" kick-off event took place in Frankfurt on 8 February 2023. Over 100 members of the total of over 400 women from 50 different nations organised in the association were present. In this year's fundraising campaign, the IWC aims to support ME/CFS research with a significant amount of money.
Prof. Carmen Scheibenbogen, head of the Fatigue Centre at the Charité hospital in Berlin, was present by video. Jörg Heydecke (ME/CFS Research Foundation) was on site.
Prof. Scheibenbogen presented the clinical picture of ME/CFS from a medical point of view to the IWC members. She explained the current state of medical knowledge as well as ongoing projects in research. She emphasised that before the pandemic, about 300,000 patients had ME/CFS, including about 40,000 children. Due to the pandemic and the resulting post-COVID problem, one must assume at least a doubling of these case numbers. This means that more than 600,000 affected persons and their relatives in Germany are currently unable to find adequate diagnostic and care structures. Research structures have only recently received public funding in Germany. The desolate care and research picture is very similar in international comparison, although the disease ME/CFS was recognised as early as 1955 and has been classified by the WHO since the 1960s.
German politicians have meanwhile become aware of this disease and have "held out the prospect" of providing research funds for ME/CFS. However, there are still high bureaucratic hurdles to overcome before these funds flow. And even then, the funds announced so far will be far from sufficient. Often, public funding would also only be made available in conjunction with private third-party funding, of which there is also far too little to-date.
Prof. Scheibenbogen also outlined the current ME/CFS research projects, such as the IMMME (Immune Mechanisms in ME) collaborative research network or the clinical trials starting within the framework of the "National Clinical Study Group" (NKSG). These initiatives are first steps towards building more biomedical research and expertise.
Following Prof. Scheibenbogen's explanations, the ME/CFS Research Foundation was introduced to the IWC members by Jörg Heydecke. The focus was on the motivation and goals of the foundation, especially the initiation and funding of biomedical research on ME/CFS and post-COVID. Jörg Heydecke explained that the foundation sees itself as an initiator and "start-up financier" to promote new research structures and resources. In the medium term, ME/CFS research must be financed from public funds, analogous to research in other disciplines. However, there is often a lack of funding and support for the initial steps and initiatives in this field. The ME/CFS Research Foundation aims to offer this kind of support with the help of donations, such as those of the IWC.
The ladies organised in the IWC showed great interest in the topic of ME/CFS and the work of the ME/CFS Research Foundation. In the lively discussion, possible forms of support were discussed as well as concrete offers of help for affected patients. After this kick-off event, the IWC and its members will now collect donations for ME/CFS research at various levels and hand them over to the ME/CFS Research Foundation in June 2023.
We would like to thank the IWC / International Women's Club in Frankfurt in advance for this great commitment and look forward to further cooperation!
Following the event, a report on the IWC fundraising project was published in the German newspaper Frankfurter Allgemeine Zeitung (F.A.Z.):
More information about the club can be found on the IWC website: https://www.iwc-frankfurt.de
How can you support the work of the ME/CFS Research Foundation?
There is still a long way to go before diagnosis, care and treatment of ME/CFS patients will one day become a medical and social standard. We at the ME/CFS Research Foundation are focussing on biomedical research, which we see as the key element in solving these problems (more on this in our research funding strategy). To do this, we need extensive support from private donors - patients, relatives, families, friends, associations, schools, networks, companies, initiatives, event organisers and all supporters. And if you can't support us directly, maybe you can share our story and motivate others to help. Because only together is such a feat possible.
We fully translate donations and other support into scientifically excellent research, networking and ultimately visible successes, i.e. better ME/CFS diagnostics and therapies. We are happy to work together with other organisations and initiatives - please contact us!
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