Question

I have developed ME after catching Covid-19 last year and have a few quick questions about the DecodeME study. Can I still sign up to participate? When will we know the results? Will I have access to information about my own DNA? Will the study also be including people with Long Covid?

Answer

For the benefit of people who are not aware of this research, DecodeME is the largest-ever study of genetic information (DNA) in people who have ME/CFS.
The study is being led by Professor Chris Ponting from the Medical Research Council Human Genetics Unit at the University of Edinburgh and has been funded by the Medical Research Council and the National Institute for Health Research at a cost of £3.2million.

The study is recruiting 25,000 people over the age of 16 who live in the UK and have a diagnosis of ME/CFS. This will involve completing a questionnaire and if accepted then sending off a sample of saliva in the post. The study is still open and we would urge anyone who has not yet volunteered to complete an application as this research will hopefully provide some useful information about the way in which genetic factors are involved in the development of this disease.

The research should be completed in 2024. All the final data and results will be posted on the Decode website and social media channels as soon as they are available. Unfortunately, the researchers won’t be able to give participants any information about their own individual genetic findings. This is because there are practical and ethical issues that make it difficult to give personal DNA results to people who take part in research studies. The study has now been expanded to also include up to 5,000 DNA samples from people who have developed ME/ CFS after a Covid-19 infection.

More information

• More details on the research, and on how to take part, can be found on the DecodeME website.