The European Parliament’s historic vote on 17th June 2020 urging the Commission to transform the ME research landscape was widely acclaimed as a major step forward. The problem being that a Resolution of the European Parliament is not binding and merely a request to the Commission to act.
Not wishing for momentum to be lost, MEP Jordi Cañas Pérez submitted a written question to the Commission on 25th June which sought to query exactly how the Commission would react to the recommendations in the Resolution and what its actions may be. The answer did not bode well as no specific, targetted initiatives were envisaged and no real concrete proposals alluded to.
In light of this, Evelien Van Den Brink, who instigated the initial petition (0204/2019) to the European Parliament which gave rise to the Resolution, responded to the Commission. She has rightly pointed out that Commission’s answer singularly fails to acknowledge the underfunding of ME/CFS research in Europe nor does it propose new initiatives to address this urgent problem.
On the Commission’s view that ME/CFS scientists should have fair access to research funding through the Horizon Europe programme, Ms van Den Brink draws their attention to the text of the Resolution, which not only addresses the difficulties of ME/CFS scientists in accessing research funding but focusses specifically on the rights of ME/CFS patients to have their illness studied in order that effective treatments can be found.
The Commission itself has acknowledged that few ME/CFS biomedical research projects have been supported by the European Union and Ms van Den Brink highlights that this indicates that the current system of funding is not working satisfactorily for ME/CFS – given the misunderstanding and historic neglect of the illness by the international research community.
Developing her theme, Ms van Den Brink urged the Commission to make sure that there is some mechanism to direct science to areas with a high societal need and pointed out current initiatives in Australia, Canada, and the United States where governments have earmarked funding for ME/CFS research to further develop the field. The governments having based their decisions on disease burden – as ME/CFS has a high prevalence, a low recovery rate, and morbidity higher than many other chronic illnesses.
Read Ms van Den Brink’s letter in full here.
