Decode ME – latest update

Decode ME has announced that they have reached the 18,000 registered participants mark with 13,500 people with ME having completed the questionnaire.

The study aims to recruit tens of thousands of people from the UK to take part by completing a questionnaire and providing a saliva sample in order that participants’ DNA can be sequenced and studied. The study is a genome-wide association study (GWAS) which aims to uncover some of the biological roots of disease. A GWAS is a relatively new technique that focuses on small differences in DNA between people.

The goal is at least 25,000 DNA samples from people within the UK and even more participants to complete a questionnaire.

All participants who complete the questionnaire are counted as DecodeME participants and the questionnaire answers are valuable to understanding more about the illness and helping the development of future treatments.

Not everyone who completes a questionnaire will be asked to provide an at-home spit sample for DNA analysis. It is not because the researchers are questioning if a participant has ME/CFS only that answers given in the questionnaire did not meet all the requirements for the DNA stage. These requirements are set out in the study criteria which was agreed by the team, including people with ME/CFS, and in response to peer review. This is standard practice and ensured that the study received funding and ensures the results can stand up to scientific scrutiny and therefore progress further research and the development of treatments.

The study was extended to include up to 5,000 DNA samples from people who developed ME/CFS after a Covid-19 infection.

The data collected from the questionnaire is what Steve Gardner from Precision Life describes as

…. the largest-ever dataset detailing both the symptoms and the lived experience of people with ME/CFS. The opportunities for future research and treatment development that this resource can provide are unprecedented creating a huge dataset on ME.

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