DecodeME

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DecodeME
DecodeME Study Logo.svg
The study's official logo
PurposeResearch (DNA)
ICD-10-PCS G93.32. [1] [2]

DecodeME is an 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. [3] [4] Recruitment closed on 15 November 2023 and preliminary results were published in a preprint on 7 August 2025. [5]

Contents

Background

ME/CFS is a chronic medical condition that often causes significant disability, and whose cause is unknown. [6] 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. [7]

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. [3] 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. [8] [9]

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. [10]

History

The study announced receipt of funding in June 2020, and recruitment was opened on 12 September 2022. [3] [9] [11] In January 2023, the team wrote that over 17,000 patients had completed the survey, of which almost 9,000 were sent collection kits. [12] On 2 May 2023 they announced that over 10,000 people had been asked to provide samples. [13]

In June 2023, DecodeME made changes to their data analysis methodology that allowed them to invite additional participants to give DNA. [14] Recruitment for the study closed on 15 November 2023. [15] A preprint of the preliminary results was released on 7 August 2025. [5]

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. [4] [16] There will also be a survey to collect data on symptoms. [11] Results are expected to be published by September 2024. [17] If new risk factors are identified, it may enable further research into potential causes, tests, or treatments. [3] [18]

References

  1. ↑ https://solvecfs.org/wp-content/uploads/2022/12/New-ICD10-code-MECFS-Handout-for-providers-final12-6-22-1.pdf [ bare URL PDF ]
  2. ↑ https://icdlist.com/icd-10/G93.32
  3. 1 2 3 4 "UK to launch world's largest genetic study into chronic fatigue syndrome". the Guardian. 2020-06-22. Retrieved 2022-07-31.
  4. 1 2 O'Neill, Sean (2020-06-23). "Chronic fatigue syndrome: Search for genetic clues". The Times . ISSN   0140-0460 . Retrieved 2022-07-31.
  5. 1 2 Collaboration, DecodeME (2025-08-06). "Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome".{{cite journal}}: Cite journal requires |journal= (help)
  6. ↑ "Recommendations | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance | NICE". www.nice.org.uk. Retrieved 2022-07-31.
  7. ↑ Hajdarevic, Riad; Lande, Asgeir; Mehlsen, Jesper; Rydland, Anne; Sosa, Daisy D.; Strand, Elin B.; Mella, Olav; Pociot, Flemming; Fluge, Øystein; Lie, Benedicte A.; Viken, Marte K. (2022-05-01). "Genetic association study in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) identifies several potential risk loci". Brain, Behavior, and Immunity. 102: 362–369. doi: 10.1016/j.bbi.2022.03.010 . hdl: 10852/94241 . ISSN   0889-1591. PMID   35318112. S2CID   247549585.
  8. ↑ "How will you ensure that you have the support of the community of people with ME/CFS for this project?". DecodeME. Retrieved 2022-07-31.
  9. 1 2 Carmichael, Hannah (2022-09-11). "People with ME invited to take part in major genetic study". Evening Standard. Retrieved 2022-09-12.
  10. ↑ "Major study hopes to tackle ME stigma". The Independent. 2023-09-21. Retrieved 2023-09-22.
  11. 1 2 "People with ME invited to take part in major genetic study". The Independent. 2022-09-11. Retrieved 2022-09-12.
  12. ↑ Lewis, Issy (2023-01-31). "What We Achieved in 2022". DecodeME. Retrieved 2023-02-01.
  13. ↑ "We've reached 10,000 DNA participants!". Twitter. DecodeME. Retrieved 2023-05-29.
  14. ↑ Lewis, Issy (2023-06-16). "Inviting More Participants to Donate DNA". DecodeME. Retrieved 2023-09-22.
  15. ↑ Connolly, Anne (2023-11-15). "Closing participant recruitment - Thank you!". DecodeME. Retrieved 2023-11-16.
  16. ↑ Andy Devereux-Cooke; Sian Leary; Simon J. McGrath; Emma Northwood; Anna Redshaw; Charles Shepherd; Pippa Stacey; Claire Tripp; Jim Wilson; Margaret Mar; Danielle Boobyer; Sam Bromiley; Sonya Chowdhury; Claire Dransfield; Mohammed Almas; Øyvind Almelid; David Buchanan; Diana Garcia; John Ireland; Shona M. Kerr; Isabel Lewis; Ewan McDowall; Malgorzata Migdal; Phil Murray; David Perry; Chris P. Ponting; Veronique Vitart; Jareth C. Wolfe (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 . PMC   9294749 . PMID   35854226.
  17. ↑ "How long will the GWAS study take to complete?". DecodeME. Retrieved 2022-07-31.
  18. ↑ "The world's largest study of chronic fatigue syndrome to launch in UK". Happiful Magazine. 2020-06-23. Retrieved 2022-07-31.
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