Ten Members of the European Parliament have written to Research Commissioner Ekaterina Zaharieva calling for dedicated, long-term EU funding for research into myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The letter, initiated by Pascal Arimont, highlights that ME/CFS should be included in the next multi-annual financial framework of Horizon Europe.
DISCOVER-ME
The European Union recently awarded € 7.5 million in funding to an ME/CFS consortium named DISCOVER-ME. It’s led by Professors Eva Untersmayr and Simon Carding and includes 21 research groups spread across Europe and North America. DISCOVER-ME aims to study 2000 ME/CFS patients and conduct multi-omics analyses on more than 900 samples from five European biobanks. More information about the project can be found here.
Horizon Europe 2028-2034
Although this grant forms an important milestone, one project will not undo decades of underfunding. For the ME/CFS field to grow on a par with similar diseases, there needs to be a steady stream of funding opportunities. DISCOVER-ME was funded through a new Horizon Europe grant on high-burden under-researched medical conditions. It’s vital that future work programs include similar calls where ME/CFS researchers can be competitive.
Horizon Europe is the big research program of the European Union with a budget of € 93.5 billion. Its current financial framework, however, only runs until 2027. Discussions are currently underway to shape the next multiannual financial framework for the years 2028 to 2034. The total budget will almost double to € 175 billion, although only a small proportion of this amount goes to medical research.
Pascal Arimont
Member of the European Parliament (MEP) Pascal Arimont has been a strong advocate for ME/CFS patients for many years. In multiple written questions (examples here and here) he has highlighted the importance of structural funding for ME/CFS research and the need for follow-up measures. In particular, Arimont argued that the 2025 Horizon Europe call on high-burden, under-researched conditions should also be included in the next multiannual financial framework.
In a reply, Commissioner Zaharieva mentioned that the Commission is indeed “considering the possibility of including in future work programmes of Horizon Europe (2028-2034) topics like the call topic: ‘Tackling high burden for patients and under-researched medical conditions’”. This discussion could be of vital importance for the future of ME/CFS research in Europe.
The letter
Last month, Arimont wrote a letter with nine other MEPs that further emphasizes this point. It highlights, for example, that the new call on high-burden diseases was a step in the right direction but that it was also highly underfunded. It had a success rate of only six percent, and multiple high-quality proposals from international consortia were rejected.
We are aware of several high-quality ME/CFS consortia that applied to the 2025 call. One achieved a near-perfect score of 14.5 out of 15 yet still received no funding. This underlines a bottleneck: the ME/CFS field is maturing and generating competitive proposals, but funding is not keeping pace and remains insufficient.
The letter echoes a growing consensus that ME/CFS, together with Long Covid and other post-infectious conditions, represents one of the greatest health-policy challenges of the twenty-first century. Research funding for ME/CFS nonetheless remains far below what its disease burden would warrant. The signatories state that “Decades of neglect and underfunding can evidently not be overturned by one study but need a consistent and long-term research program.” The letter was signed by MEPs from four member states — Belgium, Germany, Austria and France — representing different political groups.
| Signee | Country | EU political group |
|---|---|---|
| Pascal Arimont | Belgium | EPP |
| Wouter Beke | Belgium | EPP |
| Liesbet Sommen | Belgium | EPP |
| Verena Mertens | Germany | EPP |
| Andrea Wechsler | Germany | EPP |
| Nora Mebarek | France | S&D |
| Tiemo Wölken | Germany | S&D |
| Günther Sidl | Austria | S&D |
| Hannes Heide | Austria | S&D |
| Jutta Paulus | Germany | Greens/EFA |
We are very grateful for the support of the MEPs and hope that the new Horizon Europe framework for 2028-2034 will provide sufficient funding opportunities for ME/CFS research.