Frequently Asked Questions
Frequently asked questions
Questions regarding donations
As of today, you may make a bank transfer or payment to our donations account We are working on offering other payment methods (e.g. SEPA debit, Paypal, ...). However, all other payment methods will incur costs of 2-4% of the donated amounts. Therefore, please donate today by bank transfer or payment.
Information on tax recognition, donation receipts, etc. can be found at our donations page.
The ME/CFS Research Foundation has only low administrative costs, which are already covered by dedicated donations. This means we can guarantee that 100% of your donation will go towards funding biomedical research.
We strive to ensure that 100% of our research funding to universities and institutes benefits research (i.e. without flat-rate deductions for administration, etc.). Should this not be possible in individual cases, we would either prioritise other institutes or projects, or we would try to reach an appropriate agreement with the institutes concerned without deductions.
For the sake of completeness, however, we would like to point out that every research project involves a certain amount of administrative work (among other things, to fulfil mandatory regulatory requirements).
Yes, you can make a donation for a specific purpose. Please note the purpose of the donation in the subject line of the transfer, e.g. "Donation for Project XY at University Hospital XY" or send us an explanatory note. e-Mail. Currently, however, we can only support non-profit projects in Germany. Donations without earmarking are awarded according to our research quality criteria and the prioritisation of our scientific advisory board (under construction).
Questions regarding ME/CFS Research Foundation
Formally, we are non-profit limited liability company ("gGmbH" in German). This is a more flexible legal form for our purposes than the foundation under civil law. However, with regard to the purpose of our activities, our ability to make donations and our non-profit status, there are no significant differences to a foundation. Many other so-called "foundations" in Germany are also formally not foundations under civil law.
As a gGmbH, the ME/CFS Research Foundation is formally owned by the founder and managing partner Jörg Heydecke. In addition, volunteers under the leadership of Martin Hippe (co-founder) fulfil various tasks for the society. An international scientific advisory board, which will advise on the use of funds, is currently being established. In addition, we work together with the major patient organisations in Germany that are active in the field of ME/CFS:
– German Society for ME/CFS (Deutsche Gesellschaft für ME/CFS e.V.)
– Fatigatio e.V. – Federal Association for ME/CFS (Fatigatio e.V. – Bundesverband ME/CFS)
– Long Covid Germany (Long Covid Deutschland)
– Lost Voices Foundation (Lost Voices Stiftung)
Non-profit law and our statutes restrict the use of funds to the exclusively non-profit purposes defined in the statutes: "Promotion of science and research as well as public health and public health care ..." with a focus on ME/CFS. All donations to the gGmbH may be used exclusively for these purposes.
The ME/CFS Research Foundation has only low administrative costs, which are already covered by dedicated donations. This means we can guarantee that 100% of your donation will go towards funding biomedical research.
Questions regarding research
The ME/CFS Research Foundation exclusively promotes scientific, evidence-based, biomedical research on ME/CFS and Long Covid. Projects and institutes are selected on the basis of quality criteria, which are based, for example, on the "National Action Plan for ME/CFS and the Post-COVID Syndrome" (Link), that has been developed and was recommended to the German government by the patient organisations German Society for ME/CFS (Deutsche Gesellschaft für ME/CFS) and Long COVID Germany (Long COVID Deutschland) . The Scientific Advisory Board of the ME/CFS Research Foundation (currently being established) will ensure compliance of all funded projects with these quality criteria.
The ME/CFS Research Foundation exclusively funds scientific, evidence-based, biomedical research on ME/CFS and Long Covid. An international advisory board advises on the use of funds (under construction). Earmarked donations will be directed to the appropriate projects (see the question "I would like to support a specific scientist with my donation"). We will announce the funded institutes and their projects / focal points as soon as the first funds have been pledged.
Yes, we are not only striving for the exchange of information between researchers on their ongoing studies, but are also working on a network of researchers that goes beyond this. Some of the information exchanged informally within the framework of ongoing projects will only be made public later. We strive for maximum transparency.
We will publish regular updates on our work. When specific research results can be published depends on the study design and review process. However, we aim to publish both the research protocols (hypothesis, study design, outcome measures) and scientifically validated results of the studies we fund as soon as possible.
Yes, we aim to support scientists who are already familiar with the international state of research on ME/CFS. In addition, we are already networked with many international scientists and are constantly expanding this network. Our international scientific advisory board (currently being established) will also promote the networking of researchers.
Questions regarding other issues
Yes. From May 2023, the ME/CFS Research Foundation will fund and support the International ME/CFS Research Conference (for researchers and medical professionals) as well as the complementary ME/CFS Symposium on Research and Care at the Charité Fatigue Center (for patients, caretakers, and the interested public). We intend to run both events regularly, on an annual basis.
We may also organise or support further congresses and informal exchange events between funded researchers as needed. The extent to which these events will be open to the public must be considered on a case-by-case basis. Information on this will be posted on our website in due course. Further training events for practising doctors are not planned within the framework of our activities. However, these are regularly organised, e.g. by the German Society for ME/CFS (Deutsche Gesellschaft für ME/CFS) or by the Charité Fatigue Center (Charité Fatigue Zentrum) .
Unfortunately, no. We are in close contact with medical doctors and researchers, but cannot and must not recommend any particular medical treatments or medical doctors. The Charité Fatigue Centre offers information for patients and an overview of ME/CFS support groups and patient organisations in Germany. Information on therapy approaches and ME/CFS research is available in layman's terms on the excellent blog Healthrising.org (English language only). We intend to build up a range of other "resources" on our website in the near future.
We regularly add to the list of FAQs. If you have a question that has not yet been asked or answered adequately here, please simply send us an e-mail: FAQ@mecfs-research.org We will then comment on your question as soon as possible.
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