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2023 in Review – ME research UK influencing ME research

ME Research UK exists to inform, influence and invest in ME/CFS research and, to date, we have invested over £4 million in biomedical research worldwide on 66 distinct projects and funded 5 PhD-level researcher studies. In addition, we have, alongside the Daphne Jackson Trust, launched a Fellowship to encourage post-doctoral researchers to return to their work and study ME/CFS. There is more to do and we are determined to do more. 

Highlights of the charity year included ME Research UK:

  • Being 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’. ME Research UK’s detailed response was hailed on social media as the basis for individuals’ responses and referenced on other websites as an ‘excellent’ analysis of the issues, with links to ME research UK’s website.
  • Attending and contributing to the Forward-ME Group meetings. Forward-ME members work collaboratively to improve recognition and understanding of ME/CFS. The focus of the Group is the urgent need for biomedical research; effective diagnosis and appropriate symptom management; and appropriate care and support services for ME/CFS. Through membership, 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 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.
  • Attending and playing 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 (Projects 29 & 32 – combined investment £76,542). The charity notes that samples for the Biobank have been utilised by Prof. Khan (Project 37) and Dr Westermeier (Project 50).
  • Being in contact with ME Research UK grant holders and potential funders to raise the profile of the charity.
  • Collaborating with Action for ME to co-fund a PhD-level research project at King’s College, London.
  • Through the efforts of the Chair, discussing with other organisations the research landscape and scope for collaborative working and a more pro-active approach to research project funding.
  • Attending virtually the International ME/CFS Research Conference – Berlin, May 2023.
  • Attending the Invest in ME Research Conference – Cambridge, July 2023.
  • Launching both a specific X/tweet thread for researchers but also a new Fellowship which both aim to raise the charity’s profile within the research community.

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