Highlights of the charity year included the following:
- ME Research UK was an active participant in the Department for Health and Social Care’s ME/CFS Delivery Plan under the auspices of the UK Clinical Research Collaboration’s ME/CFS Research Subgroup. This structure being part of the former Secretary of State’s initiative and reports directly to the Chair of the UKCRC, and to the ME/CFS Delivery Plan Task and Finish Group. ME Research UK is a participant in the funder-led sub-group ‘Building capacity and capability in the research community’.
- Trustee Dr Eleanor Roberts took active part in PrecisionLife’s BioHackathon for UCL researchers using data generated by a PrecisionLife platform to help answer some of the top 10 ME/CFS research priorities that have been set by the ME/CFS Priority Setting Partnership. The February 2024 event brought together different groups of domain experts and specialised computer scientists with various experience and skills to “hack” solutions related to ME/CFS as a biomedical topic. Not only did it introduce students to ME Research UK but also ME/CFS as a research topic at the vanguard of science.
- ME Research UK has also attended workshops on Post-Exertional Malaise (PEM), under-served groups and drug repurposing as part of the Research Subgroup.
- The Vice Chair was interviewed on LBC radio (Matthew Wright) on 10th August 2024 in wake of Maeve Boothby-O’Neill’s Coroners Inquest.
- The charity was featured in the ‘Medscape’ article ‘Long COVID & ME/CFS: The Similarities are Uncanny’ on 16th July 2024 as they reported to medical professionals on the science of ME/CFS and parallels with Long-COVID.
- Technology Networks a journal which ‘explores the science which matters to you’ interviewed ME
Research UK’s Science Writer and covered ME Research UK’s research and views on ‘What’s the Current State of ME/CFS Research?‘ – 22nd August 2024. - The Chair took part in a panel Q&A organised by CureME in Sept 2024.
- Through membership of Forward-ME, ME Research UK influences the grouping’s contributions to other areas of the Secretary of State for Health and Social Care’s initiative – namely the overarching ME/CFS Delivery Plan Task and Finish Group and the Working Group subcommittees on Attitudes and Education, and Living with ME/CFS. Forward-ME is also a partner in DecodeME the world’s largest ME/CFS study which seeks, through the recruitment of 25,000 people with ME, to see whether the disease is partly genetic and, if so, help pinpoint what its causes are. The study should help researchers understand the disease and ultimately find treatments. In addition, Forward-ME is also a member of the World ME Alliance.
- ME Research UK attended and played an active part in Steering Group meetings of the UK ME/CFS Biobank hosted by the London School of Hygiene and Tropical Medicine. ME Research UK was a financial supporter of the Biobank in its formative stages. The charity notes that samples for the Biobank have been utilised previously by Prof. Khan and Dr Westermeier as part of their ME Research UK-funded projects with samples currently being used by Prof. Fatima Labeed.
- The charity has been in contact with ME Research UK grant holders and potential funders to raise the profile of the charity.
- The charity collaborated with Action for ME to co-fund a PhD-level research project at King’s College, London.
- The charity collaborated with the ME Association to co-fund a project at the University of Surrey.
- Through the efforts of the Chair and Vice Chair, the charity discussed with other organisations the research landscape and scope for collaborative working and a more proactive approach to research project funding.
- We attended virtually Lisbon’s 1st International Conference on ME/CFS and Long Covid.
- We attended virtually Berlin’s 1st International Conference on Long Covid and ME/CFS.
- We attended the Invest ME Research Conference – Cambridge July 2024.
- We launched the Founders’ Award Writing competition for early career researchers.
Overall, 2024 has seen the charity both deliver and continue its focus on informing, influencing and investing in ME research.
