DecodeME Study Newsletter

 

As we approach one year since DecodeME’s full launch, we’d like to update you on how things have been going.   Firstly, we can confirm that over 23,000 people have signed up and completed their questionnaire, over 19,000 of whom have also been invited to provide a DNA sample. This is great news, thank you to everyone who has participated!   However, we are still only 75% of the way to reaching our goal, so we still need more participants! Please continue to help us spread the word to people with ME/CFS about the opportunity to take part in the world’s largest ME/CFS research study! You can find resources to help you do this on our Ways to Share page.   We recently became able to invite more participants to donate their DNA to the study, you can read more about this change in our blog post: Inviting More Participants to Donate DNA.   Initial findings from the DecodeME Questionnaire Data Published. Having analysed the questionnaire data from the first 17,000 participants, our findings, have been published by NIHR Open Research. You can read the summary of the findings on our 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. (Trigger warning: the full documentary contains conversations on suicide). If you haven’t yet signed up as a participant in the DecodeME study, but would like to do so, please visit www.decodeme.org.uk/portal. Thank you for supporting the study, we couldn’t do this without you!     Warmest wishes, The DecodeME Team