DecodeME - We aim to find genetic causes of why people become ill with myalgic encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) with our ground-breaking research. Take part from your home.
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!
The DecodeME Team
42 Temple Street, Keynsham, BS31 1EH,
Together we can decode ME/CFS. Scientists and people with ME/CFS, carers and charities have come together to create DecodeME. It’s a huge genetic study that aims to uncover causes of ME/CFS, pointing the way towards effective treatments.
For more information on the study and taking part, view the DecodeME Study Documents, and sign up for their newsletter updates.
Also, see DecodeME recent news from Action for ME and the ME Association.
Action for ME (AfME)
DecodeME: Initial Questionnaire Findings Published
August 24, 2023
Today, the initial findings from the DecodeME questionnaire data collected from the first 17K participants have been published on NIHR Open Research. You can find a summary blog of the article on the DecodeME website here.
The ME Association (MEA)
Guardian: Women with ME tend to have more symptoms than men, study suggests
August 24, 2023
Please refer to Dr Shepherd's Q & A at the bottom of this blog about why more women than men develop ME/CFS
Study of chronic fatigue syndrome also finds women are more likely to develop worse symptoms over time
For further background information, including information from Action for ME, The Medical Research Council, the National Institute for Health Research, the ME Association, and press articles go to our group’s previous • DecodeME blogs These include -
ME/CFS Biomedical Partnership - Genetics Research - DecodeME UPDATE (2 September);
ME/CFS Biomedical Partnership - Genetics Research.;
Biomedical Genetics Research: The ME/CFS Biomedical Partnership.
• Action for ME • DecodeME • M.E. Association • Research