EMEA News Q1 2026
EMEA Joins the First Major EU Horizon Research Programme Dedicated to ME
The European ME Alliance (EMEA) is a partner in DISCOVER-ME - the first major pan-European biomedical research programme dedicated to myalgic encephalomyelitis, and the first project of its kind to be funded under the EU Horizon programme. The award marks a landmark moment for ME research in Europe and for the patient community that EMEA represents.
DISCOVER-ME - full title: Biological evidence and mechanism-based disease classification for the improved diagnosis, prognosis and treatment of ME/CFS - has been awarded EU Horizon funding under call HORIZON-HLTH-2025-01-DISEASE-07, the first European research call ever to name ME explicitly as a priority condition. The consortium is led by the European ME Research Group (EMERG) and coordinated by the Medical University of Vienna and Quadram Institute, UK, with over 20 partner institutions across more than a dozen countries in Europe and Canada.
About this article
EMEA is a full partner in DISCOVER-ME - the first major EU Horizon-funded biomedical research programme dedicated to ME. This article describes the project, its significance for European ME research, and EMEA's role within the consortium - including leading the pan-European patient and public involvement group drawn from EMEA member organisations and others across Europe.
The Significance of EU Horizon Funding for ME
For decades, ME has attracted research investment at a fraction of the level justified by its burden on patients and on European health systems. The socioeconomic cost of ME in Europe exceeds €40 billion annually, yet the disease has remained among the most under-researched conditions relative to its prevalence and severity.
The decision by the European Commission to name ME explicitly as a priority condition in a Horizon Europe health call - and the subsequent award of a major multi-year research programme - represents a substantive shift in how the disease is regarded at the highest level of European health policy. It is a recognition that the patient community and the research groups that have advocated for this moment have worked towards for many years.
DISCOVER-ME is a four-year programme that will undertake harmonised clinical phenotyping of 2,000 patients and multi-omics profiling of over 900 samples from five European biobanks - generating the largest coordinated dataset ever assembled for ME research. The project will deliver the first biologically validated stratification framework for ME, underpinning future diagnostic tools and treatment development.
EMEA's Role in DISCOVER-ME
EMEA holds a formal partner role in the DISCOVER-ME consortium, with
responsibility for leading the dissemination, communication and exploitation
work package - ensuring that the project's findings reach researchers,
clinicians, policymakers, patients, and the wider public across Europe and
beyond. EMEA also holds task leads in patient and public involvement and in
a further work package, with involvement across all nine work packages of
the project.
This breadth of involvement reflects the recognition within the consortium that effective patient and public involvement and effective communication of research outputs are not peripheral activities - they are central to the success and impact of a project of this scale and ambition.
The EMEA PPI Group
Patient and public involvement across DISCOVER-ME will be delivered through
the EMEA PPI Group - a dedicated group drawn from EMEA member organisations
across Europe. The group brings together representatives of national ME patient
organisations from across the EMEA membership, ensuring that patient perspectives
from across Europe inform the research at every stage - from the design of
clinical assessment tools to the communication of findings to patient communities
in their own countries and languages.
This model of pan-European patient representation - rooted in established national organisations rather than individual participation - is designed to ensure that the full breadth of the European patient experience is brought to bear on the research, and that the outputs of DISCOVER-ME are communicated effectively to the communities they are intended to serve.
Background
EMERG - the research group leading the consortium - was founded by Invest in ME Research in 2015 and has developed through successive annual meetings held alongside the IiMER International ME Conference Week and Biomedical Research Colloquia. EMEA's participation in DISCOVER-ME as a full consortium partner reflects the maturity and reach of the pan-European network that has been built over more than fifteen years and includes the European ME Clinicians Council and Young EMERG for early-career researchers - all involved in the project.
Further Information:
- Medical University of Vienna - DISCOVER-ME Press Release
- Invest in ME Research - Full Announcement
- EMERG - DISCOVER-ME Announcement
Last Update: June 2026