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
Despite the high number of people affected and the severe, lasting suffering of ME/CFS patients (and often their relatives), there is a lack of sufficient research funding worldwide and especially in Germany to conduct medically effective research into diagnosis and treatment. Without adequate research and teaching, the disease has remained largely unknown even to many medical doctors. As a result, patients usually experience a frustrating, fruitless "odyssey" through the medical and social systems. They are regularly misdiagnosed, wrongly treated and often not adequately cared for or not even diagnosed at all... This needs to change as soon as possible! ... and we want to contribute to change this for the better!
Research: the critical first step towards improving the ME/CFS patient's situation
Our goal: We want to generate sufficient funding to kick-start more basic biomedical and drug research. In doing this, we want to overcome the current "chicken and egg problem" of lack of funds leading to lack of research interest leading to lack of understanding ME/CFS. 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. Hence we aim to give a constructive impulse so that in the medium term, public and sustainable research funding by government and the established institutions may arise on an adequate scale for ME/CFS.
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.
What kind for research are we going to fund?
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.
We aim to provide the criteria and the funding process for research applications here as soon as possible. When selecting projects and institutions, we are guided by scientific quality criteria, such as those proposed by the patient organisations German Society for ME/CFS (Deutsche Gesellschaft für ME/CFS) and Long COVID Germany (Long COVID Deutschland) as part of the "National Action Plan for ME/CFS and the Post-COVID Syndrome" (link).