Highlights of the charity year included the following:
- widespread media, charity sector and official recognition of an increased prevalence figure for ME/CFS arising from PhD-level research funding from ME Research UK. The research and prevalence figure referenced by Dept for Health & Social Care in the ME/CFS Delivery Plan replacing the NICE guideline’s figure, and on the BBC.
- ME Research UK supporting calls for creation of internationally recognised and operationalised research criteria for ME. In doing so, it joined leading researchers, clinicians, fellow charities, patients, advocates, and supporters from across the globe.
- the charity being an active participant in the Department for Health and Social Care’s ME/CFS Delivery Plan under the auspices of the
- ME Research UK attending workshops on Post-Exertional Malaise (PEM), under-served groups and drug repurposing as part of the Research Subgroup
- through membership,of Forward-ME, ME Research UK influencing 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 sub-committees 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. - increased contact with ME Research UK grant holders and potential funders to raise the profile of the charity.
- collaborating with the ME Association to co-fund a project (Project 71) at Brunel University, London.
- through the efforts of the Chair and Vice Chair, discussing with other organisations the research landscape and scope for collaborative working and a more pro-active approach to research project funding.
- funding the poster competition at IACFS/ME October 2025 Conference.
- reaching out and holding meetings with MSPs and MPs on the Delivery Plan and the plight of research funding in the UK.
- creating of a Research Circle. The Circle is aimed (initially) at PhD-level students working on projects funded by ME Research UK charity, and :
- Creates an online space for students to network and learn about each other’s work.
- Provides an opportunity for skill development through talks given by members of ME Research UK staff, from established researchers in the field, and from other relevant experts.
- Provides a friendly forum to discuss challenges faced, to practice presentations, and to lay the foundations for future careers.
- Fulfills ME Research UK’s aim to create an environment to encourage, support, and to facilitate the entrance and retention of early-career researchers in the field of ME/CFS research.
- Through the funding of PhD-level research, we facilitate the forging of bold, new researchers whose career progression will impact the research field for decades.
Overall, 2025 has seen the charity both deliver and continue its focus on informing, influencing and investing in ME research.
