Our first demand to the Federal Parliament aims to improve the medical care situation for ME/CFS sufferers in Germany, which currently is devastating. Therefore we particularly ask for the
inclusion of ME/CFS in the catalogue of § 116b (1) SGB V. This provision is part of German Social Security Law and regulates so-called „outpatient specialist care“ (ASV), which concerns the diagnosis and treatment of complex diseases or diseases that are difficult to treat. ASV allows for additional ways of providing healthcare services for the diseases mentioned in the catalogue of § 116b SGB V. This should lead to improved cooperation, qualification and equipment of all involved healthcare providers.
Our second demand regards
investments in biomedical research on ME/CFS. At the end of 2020 the German Bundestag made dedicated funds available for ME/CFS for the first time, which was the result of efforts made by a small number of MPs. This was a very important first step, as these funds serve to set up patient registers and biobanks – thus creating the prerequisite for high-quality and promising research. To ensure that this kind of research gets underway quickly on the scale required, we are now asking the Bundestag to make provision for funding of disease-specific scientific research into ME/CFS. In our opinion, the scope of this funding must particularly take into account the large disease burden and the general neglect of ME/CFS during the past decades.
Finally, as we are aware that even an implementation of the two aforementioned points would not lead to the solution of all problems in the field of ME/CFS, we also ask the German Bundestag to create a permanent contact with ME/CFS sufferers and patient organisations, for example by
appointing a designated parliamentary representative or by establishing an inter-factional working group. In particular, we hope that this will provide lasting political support so that further political measures can hopefully completely eliminate neglect and stigmatisation of ME/CFS in the future. Despite the different working approaches of the two parliaments, the „All-Party Parliamentary Group on Myalgic Encephalomyelitis“ (
APPG on ME) in the British House of Commons could serve as a model for the future commitment of the German Bundestag.
After all, some may wonder why we do not also, or instead of aforementioned points, call for the general „
recognition“ of ME/CFS. Of course, definitive and full recognition of existence and severity of ME/CFS in medicine, politics and society is an extremely important concern for us – as it probably is for all those affected as well as for their relatives and supporters. However, this would be a request upon which the German Bundestag, as the federal parliament, could not decide directly. In political terms, such recognition would be expressed anyway by implementing our aforementioned proposals. In all other respects, though, the German Bundestag can only work towards this goal through different parliamentary acts, but cannot establish it conclusively through legislation.
