In a historic vote on 17th June 2020 the European Parliament called for additional EU funding for research into ME/CFS and the prioritisation of projects focused specifically on biomedical research. The Resolution was carried by 676 votes in favour, 4 against and 8 abstentions. However, Resolutions are non-binding and how the Commission and the 27 Member States of the EU react reacts will be the acid test. The matter now pass to the Commission to decide whether and how to put the aims of the Resolution into effect and how much money (if any) will be allocated to a particular programme.
By adopting this Resolution, Parliament gives voice to patients’ concerns and supports their legitimate requests for greater awareness and funding for research. We urge the Commission to allocate additional funds for EU biomedical research on ME/CFS, in order to quickly develop diagnostic tests and ensure patients have access to effective treatment.
Dolors Montserrat (EPP, ES), Chair of the Petitions Committee. Press Release
Further, the Resolution called for more European and international co-operation on research into ME/CSF, in order to speed up the development of objective diagnostics standards and treatment.
The Resolution pre-amble laid bare some stark facts which are worth remembering and which laid down the justification for the adopted text
- approximately two million people in the EU, of whatever ethnicity, age or gender, are believed to be afflicted with ME/CFS; whereas among adults, women are the most affected.
- ME/CFS is poorly understood and, consequently, underdiagnosed, owing to insufficient knowledge about this disease among healthcare providers, or else because of the difficulties encountered in the detection of symptoms and the absence of appropriate diagnostic tests.
- the patients’ community feels deprived and ignored by public authorities and society as a whole, and legitimately asks for greater awareness and additional funding to support progress in research; whereas patients denounce being victims of stigmatisation as a result of poor knowledge of this disease
- that the stigma surrounding the rights of persons with ME/CFS and the associated psychological distress, has a dramatic impact on individuals, families and society and on every aspect of citizens’ lives, is too often poorly recognised.
In addition, MEPs called on the Commission
- to look into the feasibility of an EU fund for prevention and treatment of ME/CFS. The Parliament recognised that due to insufficient knowledge among healthcare providers and absence of appropriate testing, ME/CFS is still poorly understood and as a result, underdiagnosed and that poor knowledge also can lead to stigmatisation and psychological distress.
- with Member States to launch information and awareness campaigns among health professionals and the public.
- to commission a study assessing the overall social and economic costs attributable to ME/CFS within the EU.
- to recognise that the current underfunding of biomedical research into ME/CFS is unjustified considering the estimated large number of patients and the consequent economic and social impact of this disease.
- to 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; and for all Member States to take with determination the necessary steps to ensure the due recognition of ME/CFS.
- to 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.
- to provide funding to ensure appropriate and improved medical education and training for health and social care professionals working with ME/CFS patients.
- to 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.
- to 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.
We await developments. The Resolution accepts the challenges face by those affected by the illness; the lack of support and recognition and, above all, the dearth of funding directed towards understanding this illness. However, Resolutions do not necessarily result in action.
