@decodeme
The world's largest genetic ME/CFS study. Launches in 2022 (UK). Join from home.
2025 Big Survey - Action for ME
2025 Big Survey - Action for ME
Find out how you can contribute to our 2025 Big Survey - a vital research project aiming to illustrate the impact of ME and long Covid.
DecodeME Website
DecodeME Website
DecodeME aimed to find genetic causes of why people become ill with Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS). The study will help us understand the disease and ultimately find treatments.
Support ME Research
Support ME Research
Donate to build on the work of DecodeME by supporting future research into ME/CFS through partnerships between Action for ME and the University of Edinburgh.
What's next for DecodeME? Blog
What's next for DecodeME? Blog
Initial DNA Results Webinar
Initial DNA Results Webinar
14 August 2025 With Sonya Chowdhury, Chris Ponting and Andy Devereux-Cooke This webinar covers the initial DNA results, what they mean for people with ME/CFS, what happens next, and a Q&A session.
FAQs
FAQs
Initial DNA Results Announcement Blog
Initial DNA Results Announcement Blog
The DecodeME team is delighted to announce that the initial analysis of 15,579 DNA samples is complete, and we have important news to share.
Initial DNA Results Preprint Paper
Initial DNA Results Preprint Paper
Researcher access
Researcher access
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.
Science behind the genetic findings
Science behind the genetic findings
Scientists, people with ME/CFS, and their charities came together to create DecodeME, the world's biggest ME/CFS study – and its results are striking. 18,000 people with ME/CFS gave their DNA, enabling DecodeME to reveal eight genetic signals for the illness. These signals indicate that immune and neurological processes play a significant role in ME/CFS.
Putting people with lived experience at the heart of research
Putting people with lived experience at the heart of research
People with lived experience are at the heart of this ME/CFS research study and involved in all aspects of the research, from design, governance and delivery.
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