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Decode ME - research powered by YOU!

DecodeME - an update!

It's now one year since the DecodeME’s research scheme was launched! We were honoured to host the principal researcher, Professor Christ Ponting, in our Science From Your Sofa talks last year. You can catch up on his talk here, and read on for the achievements so far!

An amazing 23,000 people signed up and completed a questionnaire about their ME and from these 19,000 were invited to provide a DNA sample - it's quick and painless and doesn't involve needles. Subsequently the Decode ME project has invited more participants with a wider range of eligibility criteria, you can read more about this in their blog post Inviting More Participants to Donate DNA. Initial findings from the DecodeME questionnaire data has now been published looking at the responses of the first 17,000 participants. These findings have been published by NIHR Open Research, making them free to access to medics and researchers alike. You can read the summary of the findings the Decode ME blog. DecodeME’s Investigator Professor Chris Ponting recently spoke about the study and the importance of ME/CFS research in Thomas McCann’s documentary ‘Living With ME’. You can watch the full documentary on YouTube. (Content warning: the full documentary contains conversations about suicide).

However, the project is still only 75% of the way to reaching their goal, so if you haven't yet participated now is your opportunity to make history! If you haven’t yet signed up as a participant in the DecodeME study, but would like to do so, please visit or spread the word to others with ME/CFS about the world’s largest ME/CFS research study. You can find resources to help you do this on the project's Ways to Share page.

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