MRC Human Genetics Unit
Medical Research Council Human Genetics Unit

Carol Monaghan MP visits DecodeME team

The Shadow SNP Spokesperson for Education and Science, Innovation and Technology visited the MRC Human Genetics Unit to learn about the study on 27 September.

Hosted by Professor Chris Ponting and Sonya Chowdhury, Chief Executive of Action for M.E, Carol Monaghan MP (Glasgow North West) visited to meet the team behind the DecodeME project and to learn about the world’s largest study into ME/CFS.

Carol Monaghan MP has campaigned on the issue of research, treatment and attitudes towards myalgic encephalomyelitis (M.E), leading two Westminster Hall debates in 2018, and a full debate in the House of Commons in 2019.

The visit included a tour of the Unit, introduction to the Genetics Centre of Excellence for M.E and discussion of the UK cross-government interim delivery plan on ME/CFS, the recent Action for M.E. report on implementation of the NICE Guidelines for M.E, and objectives for engagement at Westminster.

I was delighted to visit the landmark DecodeME study at the MRC Human Genetics Unit in Edinburgh to learn more about the project and its initial findings. The biggest of its kind, this study, in partnership with Action for M.E. and the University of Edinburgh, seeks to find genetic causes to M.E. I was amazed by the dedication of the team as they relayed how the data is pointing to this disease overwhelmingly affecting women. Despite its prevalence, research into female-dominant diseases such as M.E. remain hugely underfunded. This is wrong. It is clear that we need far more funding for research like DecodeME’s so that those living with long-term diseases such as M.E. are given every opportunity to live a normal life. I encourage those living with M.E. to take part before the November 15th deadline.

Carol Monaghan MP


DecodeME is open for new participant sign up until 5pm on 15 November 2023. To find our more, visit the website link below.


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