Research into the diseases ME/CFS and Long COVID is funded

01.07.2022 09:56

The newly founded non-profit ME/CFS Research Foundation is now calling for donations for research into the diseases ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and Long COVID. ME/CFS usually occurs after infectious diseases, including COVID-19. Even before the pandemic, there were an estimated 300,000 people affected in Germany, including 40,000 children and young people. Added to this is the rapidly growing number of Long COVID patients. To date, there has been hardly any public research funding for research into these diseases. Leading medical professionals and patient organizations welcome the initiative.

Jörg Heydecke (Managing Director): “Before mid-2021 there was no (!) public research funding for ME/CFS in Germany. For me as a relative of a patient it is unbelievable: there is a serious illness, around 60% of the patients are unable to work. And instead of taking care of these people thoroughly, doctors often fob them off with embarrassing diagnoses, such as the long-refuted hypothesis that it is a psychosomatic illness - even in university hospitals!" Nobody except those affected seems to be interested in this, criticizes Heydecke: “It was only through Long COVID that these diseases were recognized as a relevant problem. There are now even initial research funds at federal and state levels. This is very welcome, but still far from sufficient.”

In addition to education and medical training, research is one of the most important building blocks for problem solving, i.e. medically and socially appropriate treatment of those affected. There are currently no biomarkers for the reliable diagnosis of these diseases. Patients are therefore often diagnosed and treated incorrectly or not at all. There is also a lack of causal therapies. Even symptom-oriented therapies are only available selectively.

Martin Hippe (co-founder): “As a long-time patient and from my network, I personally experience the dramatic consequences of medical and social neglect of ME/CFS every day - right in the middle of Germany, the country with one of the best health and care systems social systems of the world. There are interesting research approaches to ME/CFS – in Germany and internationally.

But there are far too few researchers, projects and budgets available for this. That's why Jörg Heydecke and I want to tackle the problem of funding and financing directly and have started the ME/CFS Research Foundation. If research picks up speed now, we believe positive findings are realistically achievable in the next few years.”

The ME/CFS Research Foundation is now going public to raise awareness and appeal for donations to adequately fund research. It will invest 100% of the donations in the concrete development of research capacities at university institutions and promote them sustainably. Later international expansion in Europe is planned.