ME/CFS Update – May 2026

Since my last update 5 months ago, I’ve continued to engage closely with researchers, government, medical bodies and local health boards in relation to the publication of the DecodeME study - the largest ME/CFS genetic study in the world. DecodeME has now confirmed a genetic contribution to ME/CFS affecting both the immune and nervous systems, providing important evidence that ME/CFS is a biological condition.

Earlier this year, I met with DecodeME researchers to discuss their findings, the challenges they face, and the need for sustained investment and collaboration from government. While the study marks a significant step forward, researchers were clear that progress towards treatment will be slow without proper funding. I am continuing discussions with colleagues about next steps.

I have written to medical schools, the Scottish Government and the UK Government to highlight the importance of the DecodeME findings. Medical schools have confirmed they are aware of the research and will incorporate new evidence into teaching. The UK Government has welcomed the study and outlined ongoing work under the ME/CFS Delivery Plan, including progress on e‑learning modules, public awareness indicatives and a new phase 2 clinical trial award. However, the Scottish Government have confirmed that they do not ring‑fence funding for research; a matter which remains a significant concern to the ME community.

Further to the above, I have also been engaging with the British Medical Association, which I am pleased to advise has developed new educational package on ME/CFS and is working to expand training resources further. This is a positive step forward, particularly given the ongoing issues around misdiagnosis and inconsistent awareness among clinicians.

Locally, I continue to work with NHS Fife and NHS Tayside as they review and develop their ME/CFS pathways. Both boards have confirmed plans for streamlined services, though recruitment challenges unfortunately remain. I have raised these concerns with government and will continue to monitor the development of these services to ensure they reflect best practice and the needs of patients.

Across all of this work, my focus remains on ensuring that ME/CFS is recognised, understood and properly supported through research, clinical education, and accessible services. I will continue to advocate for the ME/CFS community and push for the progress that patients deserve.