Everything starts with research
More biomedical research will lead to more medical knowledge, broader recognition of ME/CFS as a physical disease, education/training of medical doctors, better diagnoses, more appropriate treatment options, improved care for ME/CFS patients, ...
There is no adequate research, diagnosis, therapy, to-date
The problem: there is far too little ME/CFS research - both in relation to the number of patients and in comparison to similarly prevalent diseases.
For the more than 500,000 ME/CFS patients (and their relatives), there is therefore no adequate medical care so far. Without adequate research and education, the disease is largely unknown even to many medical doctors. As a result, patients usually experience a frustrating and fruitless "odyssey" through the medical and social system. They are often incorrectly diagnosed, treated and cared for – and far too often not at all. This has to change! ... and we want to change that!
Research: the critical first step towards improving the ME/CFS patient's situation
Our goal: We want to generate sufficient funding to increase basic biomedical and drug research. With this approach, we want to overcome the current "chicken and egg problem" of ME/CFS research. We think that more scientific research projects, more researchers and thus more knowledge about this disease will gradually close the knowledge gap in medicine and in the social systems. So we intend to provide a constructive-critical impulse towards adequate and sustainable research funding by public sources and established institutions.
Together with the commitment of ME/CFS and Long COVID patient organisations in the areas of political awareness and medical education, we hope for an early and effective improvement of the overall situation. Our initial focus is on Germany. Three are already some world-class experts on ME/CFS located here. As a next step we aim to expand our work into other EU countries, as soon as possible.
Private seed funding for research projects opens doors to government funding.
ME/CFS research is dramatically underfunded in Germany (and internationally). Many research projects can therefore not be realised. Hence, there is not only a lack of medical therapeutic studies, but already a lack of basic research studies (ie. in biology) that could uncover the disease mechanism and thus open the door for possible treatments.
Sometimes small amounts are enough to carry out initial studies, which could be financed with private funds. Larger research projects or the establishment of university research centres and networks, however, require government assistance, due to the larger funds needed to implement this. However, private partial funding at the early stages may be a decisive factor to initiate larger research efforts, as it illustrates the importance of a particular medical research project or even en entire research direction.
The ME/CFS Research Foundation will fund evidence-based, scientific, biomedical research. We will focus on university-based research. There we may fund various "research formats", ie. from individual research projects, to specialised scientists and ME/CFS research centres at universities, to PhD scholarships. The focus of our funding will be directed by am international scientific advisory board (currently being established) within the boundaries of available funds.
As soon as possible, we will present the criteria and the process for applying for research funding here in concrete terms. In selecting projects and institutions, we are guided by scientific quality criteria, such as those set out in the "Guide to research and care for ME/CFS and Post-COVID-Syndrome", proposed by the patient organisations German Association for ME/CFS (Deutsche Gesellschaft für ME/CFS) and Long COVID Germany (Long COVID Deutschland) in consultation with other organisations including ME/CFS Research Foundation.