Decode ME launched

The world’s largest DNA study of ME/CFS will launch at noon 12 September 2022 – and it needs you to be part of it! 

DecodeME, the world’s largest study of ME/CFS, has launched.

This £3.2 million study is a historic chance for people with ME/CFS all over the UK to help with research that could finally uncover the root causes of the disease.  The study is being led by Professor Chris Ponting of the Medical Research Council Human Genetics Unit at the University of Edinburgh and is funded by the Medical Research Council and the National Institute for Health Research.

To take part, all you need to do is fill in a questionnaire. Some people will also be asked to provide a DNA sample from home by spitting in the provided tube and posting it back to the lab, free of charge via any postbox. The study is accessible to everyone and has been developed collaboratively with people with ME/CFS, and there is additional support for severely ill people to take part.  

Decode ME needs to collect DNA from 25,000 people aged over 16, who live in the UK and have received a diagnosis of ME or CFS. Of that number, 5,000 will be those who became ill with ME/CFS after contracting Covid-19. 

The data collected through this research will help improve our understanding of ME/CFS and direct further research, as well as inform the development of treatments. To get involved, just head to the DecodeME website where you can sign up as a participant. You can also help by spreading the word about the study so we can reach even more people.

Infographic from Decode ME. Please note – ME Research UK will collect neither data nor samples.

The launch of Decode ME has been covered in the media

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