For more than 45 years, The ME Association has been at the leading edge of education, research, and advocacy for people with ME/CFS, consistently pressing for meaningful government investment in biomedical research. The ME Association therefore welcomes the Government’s decision to sustain its commitment and invest £4.75 million in new research funding to support vital work into the role of genetics in ME/CFS.
This significant investment is an important milestone for a condition that has been historically neglected, despite its profound and long‑term impact on people’s health and quality of life. It reflects growing recognition that ME/CFS is a serious, complex biomedical illness requiring robust scientific investigation and evidence‑based approaches to management.
Building on the findings from DecodeME, the new SequenceME study should provide a deeper understanding of the underlying disease process, in particular how the immune and nervous systems respond to a triggering infection in ME/CFS.
For people with ME/CFS there is now real hope that we have a route to identifying a much‑needed diagnostic biomarker blood test and, ultimately, more effective and targeted forms of treatment. Progress of this kind is essential to improving outcomes, reducing uncertainty, and ending years of delayed or missed diagnosis.
The ME Association’s long‑standing influence extends beyond research investment. Our charity played a key role in the 2021 NICE guideline update for ME/CFS, which marked a major shift towards personalised, patient‑centred care and formally abandoned Graded Exercise Therapy (GET). This change represented a critical step forward in ensuring clinical guidance is aligned with the lived experience of people with ME/CFS and the emerging biomedical evidence base.
The ME Association’s commitment to advancing biomedical understanding reached a further landmark this year with a £1.1 million investment in the Rosetta Stone Study — a pioneering research programme investigating shared disease mechanisms between ME/CFS and Long Covid. This represents the largest single investment in biomedical research ever made by a charity in this field and underlines The ME Association’s determination to drive progress through science, collaboration, and sustained advocacy.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
Media Coverage:
- The Times: Landmark ME study will map patients’ DNA in mission to find cure (Paywalled) | May 12, 2026
- Action for ME FAQ on the Sequence ME research project
- Channel 4 News Social Media (Facebook) | May 12, 2026
- ME/CFS Research Review: DNA sequencing study to help pinpoint biology of ME gets £4.7m | May 12, 2026