- An estimate of 2 million Europeans affected by the disease
- EU research remains fragmented and lacks coordination
- ME/CFS is still poorly understood and consequently, underdiagnosed
Petitions MEPs raise concerns over underfunding of EU research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), in a resolution adopted on Thursday.
In a draft resolution adopted today with 30 votes in favour and none against, Petitions MEPs call for additional EU funding to advance research on diagnostic tests and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
This comes after Parliament has tabled several questions to the European Commission on the topic and received a number of petitions raising concerns over the absence of treatment and insufficient funding for research related to the disease that affects an estimate of 2 million people within the EU.
Support for biomedical research
The Petitions Committee welcomes the Commission’s commitments under Horizon 2020 (the EU Framework Programme for Research and Innovation for 2014-2020), however it believes that current underfunding of biomedical research into ME/CFS is “unjustified”, considering the large number of patients and high socio-economic impact of the disease.
The report underlines the urgent need to address the human and socio-economic costs of individuals living and working with long-term disabling and chronic conditions and calls on the Commission to allocate additional funding and prioritise projects focused on biomedical research.
MEPs welcome the Commission’s support for the European Cooperation in Science and Technology organisation (COST), which recently created the European network of ME/CFS research groups (Euromene). While the network of researchers has been working to establish a common EU approach to address gaps in knowledge related to the disease, MEPs believe that research efforts remain fragmented and coordination across the EU is missing.
The report calls for more European and international cooperation on research into ME/CFS, in order to speed up the development of objective diagnostics standards and effective treatment. The Commission should also look into the feasibility of an EU fund for prevention and treatment of ME/CFS, say MEPs.
The draft resolution recalls that biomedical diagnostic tests for ME/CFS do not exist to this day, nor are there any EU/EMA-approved treatments for the disease.
Due to insufficient knowledge among healthcare providers and absence of appropriate testing, ME/CFS is still poorly understood and as a result, underdiagnosed. Poor knowledge also can lead to stigmatisation and psychological distress, remind MEPs.
The resolution emphasises the lack of recognition and awareness on this type of diseases and calls on the Commission and member states to launch information and awareness campaigns among health professionals and the public.
Horizon Europe and the next MFF
Finally, in the context of the ongoing negotiations on the next EU Multiannual Financial Framework (2021-2027), MEPs urge the Council to swiftly accept Parliament’s request for a bigger budget for Horizon Europe (which will succeed Horizon 2020), so that future research on ME/CFS can begin on time.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disabling and complex chronic disease of unknown origin, whose symptoms, severity and progression are extremely variable. The economic burden of the disease across Europe was estimated to amount to EUR 40 billion each year. According to the PETI resolution, an estimate of 2 million people in the EU have the disease, with women being the most affected among adults.