About us

DecodeME is the world’s largest genetic study of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). It ran from 2022, led by researchers at the University of Edinburgh in partnership with the charity Action for ME, and with active involvement of people with ME/CFS at every stage.

The study aimed to uncover genetic clues about the biological causes of ME/CFS, a complex condition with a lack of previous research of this scale, that affects hundreds of thousands of people in the UK alone. Thanks to the incredible support of the ME/CFS community, DecodeME recruited 27,000 participants across the UK, making it the largest ever study of its kind. 

Participants completed detailed questionnaires about their symptoms and experiences, and more than 18,000 also returned saliva samples for DNA analysis. By comparing the DNA of people with ME/CFS to that of healthy individuals, the study aimed to uncover genetic differences that could help identify biological pathways involved in the illness.

DecodeME was shaped by the lived experience of people with ME/CFS, with meaningful Patient and Public Involvement (PPI) embedded at every level. Guided by the principle of "nothing about me without me," people with ME were involved in all three delivery teams, the management group, and a dedicated PPI Steering Group representing networks across the ME community. PPI was at the heart of all decisions relating to governance, design and delivery throughout the study. 

Although DecodeME is now complete, its legacy continues. The data collected forms a rich, unique resource that will support scientific research for years to come. In addition to its continued  use at the University of Edinburgh, researchers worldwide can apply to access the dataset to explore new questions, build on DecodeME’s discoveries, and contribute to the growing global understanding of ME/CFS.

“DecodeME represents a major step forward in uncovering the biological basis of ME/CFS. It was only possible thanks to the thousands of people with ME who took part and shared their experiences, helping to build a scientific foundation that will shape ME/CFS research for years to come.” Professor Chris Ponting, Principal Investigator, DecodeME

DecodeME was funded by the Medical Research Council (MRC) and the National Institute for Health and Care Research (NIHR). 

Learn more about the data access and how to apply

Find out the results of our DNA analysis

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