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Videos from Professor Simon Carding and Dr Rik Haagmans on how ME Research UK-funded research helped them to secure major EU Horizon Funding for ME/CFS research

Professor Simon Carding and Dr Rik Haagmans have each recorded a short video reflecting on the ME Research UK-funded work carried out by their team at the Quadram Institute. In the videos, they explain not only the findings from this research, but also the wider value of ME Research UK’s support. Their reflections show that the funding has achieved more than a single research project. It has helped the team develop a focused ME/CFS study, build specialist expertise, strengthen collaborations, and create a foundation for larger research opportunities. One particularly important outcome was the role this work played in helping the researchers secure major EU funding for ME/CFS research. This shows how the funding from ME Research UK provided a crucial first step, giving researchers the ideas and methods they need to compete for major international funding.

Professor Carding talks about the ME Research UK-funded research that the team started in December 2023. The work, which is currently being written up for publication by Dr Haagmans, investigated whether gut viruses have a role in the development of ME/CFS. Importantly, as highlighted by Professor Carding in the video, this ME Research UK-funded work supported a successful proposal for €7.5million of funding from the European Union as part of the Horizon funding scheme. Specifically, methods developed during the ME Research UK-funded project will be used as part of the EU study, which is called ‘Discover-ME‘.

Dr Rik Haagmans describes the project, which formed part of his PhD thesis, in detail, and explains how this ME Research UK-funded work has supported his career development through collaboration and skill development. Not only did the project itself involve collaboration as the samples used were obtained from a study in Norway, called the Comeback study, which took place at the the University Hospital of Northern Norway, but Dr Haagmans now works at Amsterdam UMC, explaining that “We’re still collaborating with the Quadrum Institute and we’re sort of now expanding the the research a bit.”

What is the DiscoverME project?

DISCOVER-ME aims to help make ME/CFS easier to understand, diagnose, and treat. The project will collect detailed clinical information from 2,000 people with ME/CFS and study biological samples from more than 900 people held in five European biobanks. Researchers will look for reliable biological markers linked to ME/CFS, including changes in genes, the immune system, metabolism, hormones and the nervous system, and blood vessels. By using a large, consistent approach, the project aims to overcome the problems caused by many past studies being too small or too difficult to compare. DISCOVER-ME will focus on three main areas: finding and confirming useful biomarkers; grouping people with ME/CFS into more meaningful biological subtypes, supported by AI tools; and creating open-access disease maps and computer models to explore how biological, social, and economic factors may affect the illness. These tools could help guide future clinical trials and identify existing medicines that may be worth testing for ME/CFS. People with lived experience of ME/CFS will be involved throughout the project, helping to shape the research tools, surveys, patient grouping, and policy recommendations. By bringing together patient experience, clinical information, and biological data, DISCOVER-ME aims to produce practical evidence and tools for patients, clinicians, and health systems.
Importantly, rather than being a single study, the DiscoverME project is a coordinated programme of work that aims to bring together biomedical researchers, clinicians and patient-focused organisations to improve understanding of this complex, disabling illness and support progress towards better diagnosis, care and future treatment research.

Congratulations again to the team on their hard work, and in securing this major European Union funding for research into ME/CFS.

You can watch the videos on YouTube (@MEResearchUKOfficial in collaboration with @QuadramInstitute) or via the videos below.


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