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DecodeME is open and you can take part!

September 12, 2022

A note from the DecodeME team

We want to let you know that DecodeME has launched and fully opened recruitment.

In light of Her Majesty Queen Elizabeth II’s death and this period of national mourning, we strongly considered how best to proceed with the planned launch of this study today.

We recognise how much this study means to people with M.E. and the patience of the community in waiting for its full launch

People with M.E. are being invited to take part in the world’s largest genetic study of the condition, DecodeME.

Action for M.E. is co-leading DecodeME in partnership with the University of Edinburgh; the study is funded by the Medical Research Council (MRC) and the National Institute for Health Research (NIHR).

If you or someone you know has M.E., you are invited to take part from home by signing up on the DecodeME website. Following an initial questionnaire, participants who meet the study’s criteria will be mailed a collection kit and asked to send back a saliva sample to be compared to the DNA of individuals in the control group.

DecodeME hopes to reveal the tiny differences in a person’s DNA that can increase their risk of developing M.E./CFS, building a greater understanding of the underlying mechanisms of the disease and assisting in the search for effective treatments by testing 25,000 individual DNA samples.

Sonya Chowdhury, our Chief Executive and Chair of the Management Group of the study says:

“People with lived experience of M.E./CFS are at the very heart of the DecodeME project and our Patient and Participant Involvement (PPI) group has worked closely with researchers on all aspects of the study. Their profound involvement has been so transformational that we firmly believe it sets a new standard for health research in this country.”

The study uniquely brings together a group of researchers, people with M.E./CFS, carers and the public to advance understanding of the condition.

We encourage anyone who would like to take part in the study or help us spread the word to do so at their own pace and when they feel comfortable doing so. You can take part when you feel ready.