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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 findings reveal that women with ME/CFS tend to have more symptoms and co-occurring conditions than men. It also shows that women who have ME/CFS for more than 10 years are more likely to experience increasingly severe symptoms as they age.

Responding to the findings, Professor Chris Ponting, study lead from the MRC Human Genetics Unit at the University of Edinburgh’s Institute of Genetics and Cancer, said:

“ME/CFS is a devastating disease affecting a UK population the size of Derby. We discovered that the disease is worse for women, in older people, and many years after their ME/CFS started. Our hope is that DecodeME’s genetic results will shed light on why certain groups are more susceptible to ME/CFS than others.”

Sonya Chowdhury, our CEO and Chair of the Management Group of the DecodeME study, also added:

“These findings highlight the very serious impact ME/CFS has on women who are disproportionately affected. It’s important to also recognise the impact that it has on men who have ME/CFS, and we thank the 20,000 men and women who have already signed up to take part in this very important study. But we still need more to join us so if you are 16 or older, live in the UK and have a diagnosis of ME/CFS, please do take part now to help us decode ME at”

The publication has been highlighted today in The Guardian and the Evening Standard, along with a Sky News article featuring Sonya Chowdhury, Prof Christ Ponting, and Pippa Stacey which was accompanied by live coverage on Sky News.

So far, the DecodeME study has had over 23K participants, of which over 19K are DNA participants. However, the study is still looking for over 25,000 DNA participants and even more people to take the questionnaire. If you're aged 16 or over, live in the UK and have a diagnosis of M.E. from a healthcare professional, sign up now.



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