The world’s largest ME/CFS study

DecodeME aims to find genetic causes of why people become ill with Myalgic Encephalomyelitis (ME)  / Chronic Fatigue Syndrome (CFS). The study should help us understand the disease and ultimately find treatments.

We have now closed participant recruitment and are extracting DNA from the samples and working out their genetic make-up, so that we can compare them against the general population and analyse the results.

When we are entirely convinced we've done the best possible job, and our findings are as definitive as possible, we will publish the results.

Thank you to all DecodeME participants!

Data access for researchers

To accelerate research towards possible diagnostic tests and treatments for ME/CFS, DecodeME has built the world’s largest data set on ME/CFS as a managed access resource for future research projects.

We are now inviting applications from researchers who are interested in accessing the DecodeME data, samples or cohort.

Researchers can also request for participants to be re-contacted if further data or samples are required for their research studies.

Lab scientists at work

Watch our webinars to find out more

DNA molecule formed by chains of people

The research

The study is being led by Professor Chris Ponting of the Medical Research Council Human Genetics Unit at the University of Edinburgh.

People with myalgic encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) are at the heart of the study, with a patient and a carer as co-investigators alongside the scientists and a steering group of people with the illness, carers and charities.

The research is funded by the Medical Research Council and the National Institute for Health Research. To find out more, read our latest updates, FAQs and explanation of the science.

For more information on the study and taking part, view our Study Documents

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A partnership between

Action for ME logo
Forward ME Logo
UKRI MRC Human Genetics Unit logo
National Institute for health research