The Dutch Minister of Medical Care and Sport, Tamara van Ark, intends to ask ZonMw to carry out a biomedical research programme on ME/CFS. This was stated in a letter to the Dutch House of Representatives sent by Van Ark on the 23rd of March. There will be 28.5 million euros available to carry out a research programme with a duration of 10 years.
In doing so, the Minister has adopted the most important recommendations from the ZonMw ME/CFS research agenda. This agenda was presented to the Minister of Medical Care and Sport (VWS) on the 23rd of December 2020. The research agenda was drawn up by a steering committee composed of representatives of patient organizations, practitioners and scientists from different fields of science. ZonMw facilitated the steering committee and used its knowledge, experience and network to steer the process in the right direction.
Jeroen Geurts, chairman of ZonMw, is pleased with the intended commission to ZonMw. ‘ME/CFS is a serious chronic illness for which there is no effective treatment. More biomedical research makes scientific breakthroughs possible that improve the lives of patients with ME/CFS. The ME/CFS research agenda was the first step in that process; I am pleased that we can take the necessary follow-up steps with this new programme.’
In drawing up the research agenda, cooperation between patients, therapists and scientists played an important role. This cooperation will be continued in the new programme, according to Geurts. ‘There are many different opinions about the causes and treatment of ME/CFS. In addition, only a small group of scientists in the Netherlands conducts research into the illness. Many therapists know little or nothing about the disease. Only by working together intensively can differences of opinion be bridged, so we can we really change the lives of patients.’
‘This cooperation is not limited to our national borders. By cooperating internationally, we can set up larger-scale research, share data and combine research resources. In this way, breakthroughs will come within reach more quickly.’
Once we receive an official assignment from the Dutch government, ZonMw will begin preparations for a biomedical research programme on ME/CFS. The first scientific studies should start in early 2022. Topics that will be addressed in the preparatory phase include the participation of patientorganisations, the composition of the programme committee, the start-up of a patient cohort and the collaboration with foreign scientists.