Groundbreaking DecodeME results revealed

 The long-awaited initial findings of the DecodeME project have been revealed, and as a valued supporter we are delighted to share them with you.

This is the largest ever genetic study of ME, involving over 26,000 participants – people who generously donated DNA samples and completed detailed questionnaires. It’s a study that has put lived experience at its heart, with people with ME shaping its design every step of the way.

Co-led by Action for ME and Professor Chris Ponting and his team at the University of Edinburgh (within the ME Genetics Centre of Excellence), DecodeME is a major milestone. The findings offer new insights into the biological basis of ME, helping to validate the reality of the illness, guide future research and, ultimately, pave the way for better diagnosis and treatments.

The main findings from the analysis are:

• Your genes contribute to your chances of developing ME/CFS
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• People with an ME/CFS diagnosis have significant differences in their DNA compared to the general population.
• Eight genetic signals have been identified. As DNA doesn't change with ME/CFS onset, these findings reflect causes rather than effects of ME/CFS
• The signals discovered are involved in the immune and nervous systems, indicating immunological and neurological causes.
• At least two of the signals relate to the body's response to infection.
• Other signals point to the nervous system, one of which researchers previously found in people experiencing chronic pain, reinforcing neurological contributions to ME/CFS.
• These signals align with how people with ME/CFS describe their illness.
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Find out more about the results here.

We will be holding a webinar on Thursday 14th August, where we will explain further what has been found and answer your questions. Please click here to register for the webinar.

This moment is only possible because of long-term investment in ME research – and supporters like you who believe in making progress where it’s most needed.

We’ve come a long way, but there is still so much more to do. We remain committed to driving increased research and understanding into ME, and bringing more talented researchers into the field.

With warmest thanks for all that you make possible,

Sonya Chowdhury

Chief Executive, Action for ME