Medicine:DecodeME

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DecodeME is a genome-wide association study searching for genetic risk factors for Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). With a planned recruitment of 25,000 patients, it is expected to be the largest such study to date.[1][2] Recruitment closed on 15 November 2023 and preliminary results were published in a preprint on 7 August 2025.[3]

Background

ME/CFS is a chronic medical condition that often causes significant disability, and whose cause is unknown.[4] Genetic studies of ME/CFS have been done before, but without significant findings. The authors of a 2022 study suggested that research with more participants is needed to discover statistically significant differences.[5]

DecodeME aims to perform such a large study. It is being run as a partnership between Action for ME and the University of Edinburgh's MRC Human Genetics Unit, with Chris Ponting as chief investigator, and with £3.2 million in funding from the UK's Medical Research Council and the National Institute for Health Research.[1] The researchers have also worked with Forward ME and a group of patient advocates, the latter of which contributed to the design of the study.[6][7]

The investigators hope the study's findings will inform further research into the pathology of ME/CFS and potential treatments. They also hope that discovering a genetic connection will help dispel some of the stigma around ME/CFS.[8]

History

The study announced receipt of funding in June 2020, and recruitment was opened on 12 September 2022.[1][7][9] In January 2023, the team wrote that over 17,000 patients had completed the survey, of which almost 9,000 were sent collection kits.[10] On 2 May 2023 they announced that over 10,000 people had been asked to provide samples.[11]

In June 2023, DecodeME made changes to their data analysis methodology that allowed them to invite additional participants to give DNA.[12] Recruitment for the study closed on 15 November 2023.[13] A preprint of the preliminary results was released on 7 August 2025.[3]

Methodology

DecodeME is a genome-wide association study with a case-control design. Expected recruitment is at least 20,000 patients whose onset was not associated with COVID-19, and 5,000 people with long COVID who were diagnosed with ME/CFS after COVID-19. DNA will be collected by sending patients kits to collect saliva at home and control samples will be obtained from the UK Biobank.[2][14] There will also be a survey to collect data on symptoms.[9] If new risk factors are identified, it may enable further research into potential causes, tests, or treatments.[1][15]

References

  1. ↑ 1.0 1.1 1.2 1.3 "UK to launch world's largest genetic study into chronic fatigue syndrome" (in en). 2020-06-22. http://www.theguardian.com/society/2020/jun/23/uk-to-launch-genetic-study-chronic-fatigue-syndrome-cfs. 
  2. ↑ 2.0 2.1 O'Neill, Sean (2020-06-23). "Chronic fatigue syndrome: Search for genetic clues". The Times. ISSN 0140-0460. https://www.thetimes.com/uk/healthcare/article/chronic-fatigue-syndrome-search-for-genetic-clues-kfclg0qh6. 
  3. ↑ 3.0 3.1 Collaboration, DecodeME (2025-08-06) (in English). Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome. https://www.research.ed.ac.uk/en/publications/initial-findings-from-the-decodeme-genome-wide-association-study-. 
  4. ↑ "Recommendations | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance | NICE". 29 October 2021. https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#principles-of-care-for-people-with-mecfs. 
  5. ↑ Hajdarevic, Riad; Lande, Asgeir; Mehlsen, Jesper; Rydland, Anne; Sosa, Daisy D.; Strand, Elin B.; Mella, Olav; Pociot, Flemming et al. (2022-05-01). "Genetic association study in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) identifies several potential risk loci" (in en). Brain, Behavior, and Immunity 102: 362–369. doi:10.1016/j.bbi.2022.03.010. ISSN 0889-1591. PMID 35318112. 
  6. ↑ "How will you ensure that you have the support of the community of people with ME/CFS for this project?" (in en-GB). https://www.decodeme.org.uk/faqs/how-will-you-ensure-that-you-have-the-support-of-the-community-of-people-with-me-cfs-for-this-project/. 
  7. ↑ 7.0 7.1 Carmichael, Hannah (2022-09-11). "People with ME invited to take part in major genetic study" (in en). https://www.standard.co.uk/tech/science/people-dna-dna-research-b1024901.html. 
  8. ↑ "Major study hopes to tackle ME stigma" (in en). 2023-09-21. https://www.independent.co.uk/news/health/symptoms-university-of-edinburgh-dna-leeds-b2416303.html. 
  9. ↑ 9.0 9.1 "People with ME invited to take part in major genetic study" (in en). 2022-09-11. https://www.independent.co.uk/news/health/people-dna-covid-b2165026.html. 
  10. ↑ Lewis, Issy (2023-01-31). "What We Achieved in 2022" (in en-GB). https://www.decodeme.org.uk/what-we-achieved-in-2022/. 
  11. ↑ "We've reached 10,000 DNA participants!" (in en). DecodeME. https://twitter.com/DecodeMEstudy/status/1653338646999605249. 
  12. ↑ Lewis, Issy (2023-06-16). "Inviting More Participants to Donate DNA" (in en-GB). https://www.decodeme.org.uk/inviting-more-participants-to-donate-dna/. 
  13. ↑ Connolly, Anne (2023-11-15). "Closing participant recruitment - Thank you!" (in en-GB). https://www.decodeme.org.uk/inviting-more-participants-to-donate-dna-copy/. 
  14. ↑ Andy Devereux-Cooke; Sian Leary; Simon J. McGrath; Emma Northwood; Anna Redshaw; Charles Shepherd; Pippa Stacey; Claire Tripp et al. (19 Jul 2022). "DecodeME: community recruitment for a large genetics study of myalgic encephalomyelitis / chronic fatigue syndrome". BMC Neurology 22 (1): 269. doi:10.1186/s12883-022-02763-6. PMID 35854226. 
  15. ↑ "The world's largest study of chronic fatigue syndrome to launch in UK" (in en). 2020-06-23. https://happiful.com/decodeme-chronic-fatigue-syndrome/. 

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