On 17th June 2020, the European Parliament passed a Resolution which called for additional EU funding for research into ME/CFS and the prioritisation of projects focused specifically on biomedical research. As was pointed out in an earlier article – resolutions are non-binding and the decision on how to put the aims of the resolution into effect and how much money (if any) will be allocated to a particular broad research programme is a matter for the Commission of the European Union.
Do we know what the attitude of the Commission is?
MEP Jordi Cañas Pérez submitted a written question to the Commission on 25th June which sought to illicit such information
On 18 June 2020, the European Parliament adopted Resolution 2020/2580(RSP) on additional funding for biomedical research on Myalgic Encephalomyelitis (ME/CFS) with the aim of developing and validating a biomedical diagnositic test and effective treatment that can cure the disease or alleviate its effects.
The lack of biomedical research and coordination regarding this chronic disease, which affects women in particular, poses the main obstacle for people suffering from the disease, since it is not known what causes it nor are there any recognised diagnostic or treatment protocols. Moreover, this group is particularly vulnerable to COVID-19 and experts consider that the number of sufferers may increase significantly as a result of the pandemic (1) .
In light of the above:
1. How does the Commission intend to ensure funding for research into ME/CFS through the Horizon Europe and EU4Health programmes?Question Reference – E-003764/2020
2. Will the Commission put forward a proposal for the funding of research into diseases of unknown cause and rare diseases through a specific fund dedicated to their diagnosis, prevention and treatment?
A response was forthcoming from Ms Gabriel on behalf of the European Commission on 18th August –
A better understanding of diseases and their drivers, including pain and the causative links between health determinants and diseases, has been identified as one of the priorities of Horizon Europe. Therefore, scientists and other actors with a specific interest in Myalgic Encephalomyelitis (ME/CFS) should have many possibilities to support their research and their goals in improving the condition of patients.
It should be noted that the topics to be addressed for funding under Research and Innovation programmes are generally broadly conceived without focusing on any specific disease or condition. With this approach, researchers dispose of wider opportunities within the area of their specific interest. This approach also assures that excellence, the major criterion to be selected for funding, is met by the proposals submitted. Moreover, their evaluation is carried out by independent experts.
The proposed EU4Health programme is still under negotiation and designed to fund policy relevant actions rather than research. One of its main proposed objectives is to strengthen health systems, including through increased integrated and coordinated work among Member States and sustained implementation of best practices. Priorities for the latter are set via the Steering Group on Health Promotion, Disease Prevention and Management of Non-Communicable Diseases(1). As of yet, ME/CFS has not been identified as a priority for this purpose.
Finally, the Commission would like to recall that ME/CFS cannot be classified as a rare disease.
This does not bode well. The EU Parliament’s resolution called, amongst other headings, for the Commission to
- look into the feasibility of an EU fund for prevention and treatment of ME/CFS
- implement innovative projects that can ensure coordinated and comprehensive data gathering on this disease within the Member States, and for mandatory reporting in all Member States affected by ME/CFS
- promote cooperation and the exchange of best practices among Member States as regards screening methods, diagnosis and treatment, and to create a European prevalence register of patients affected by ME/CFS
- provide funding to ensure appropriate and improved medical education and training for health and social care professionals working with ME/CFS patients
- ensure funding of the necessary logistic support for researchers with a view to promoting the coordination of research activities in this field within the EU, in terms of identifying the complexity of the ME/CFS diagnostics and patients’ care challenges and unlocking the full potential of access to innovation and health data collected through experts’ input and all stakeholders’ engagement, in order to prioritise the right policy
- recognise the special challenges faced by researchers working on diseases of unknown cause, such as ME/CFS, and to ensure that, despite these difficulties, biomedical research on such diseases is given fair access to the funding provided by Horizon Europe
Apart from the Commission’s general aim to coordinate national systems, there is no recognition of ME/CFS being an area which requires priority action or dedication of targeted funding or initiatives. The challenges facing researchers, like chronic under investment over decades, and the overwhelming impact of the illness on patients highlighted by the European Parliament have not (yet?) impacted on the Commission. Basically, ME/CFS needs to fight it out with every other illness for funding despite its inherent systematic disadvantage.
Now attention now needs to be directed to the Steering Group on Health Promotion, Disease Prevention and Management of Non-Communicable Diseases to ensure that ME/CFS is prioritised under the proposed EU4Health scheme.