DecodeME

This article is about the ongoing study whether ME/CFS has a genetic risk factor. For the defunct genome testing service, see deCODE genetics.
DecodeME
The study's official logo
PurposeResearch (DNA)
ICD-10-PCSG93.32.[1][2]

DecodeME is an ongoing 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.[4][5] Recruitment closed on 15 November 2023 and results are expected in 2025.[6]

Background

ME/CFS is a chronic medical condition that often causes significant disability, and whose cause is unknown.[7] 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.[8]

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.[4] 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.[9][10]

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.[11]

History

The study announced receipt of funding in June 2020, and recruitment was opened on 12 September 2022.[4][10][12] In January 2023, the team wrote that over 17,000 patients had completed the survey, of which almost 9,000 were sent collection kits.[13] On 2 May 2023 they announced that over 10,000 people had been asked to provide samples.[14]

In June 2023, DecodeME made changes to their data analysis methodology that allowed them to invite additional participants to give DNA.[15] Recruitment is expected to close on 15 November.[16] Recruitment for the study closed on 15 November 2023.[17]

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.[5][18] There will also be a survey to collect data on symptoms.[12] Results are expected to be published by September 2024.[19] If new risk factors are identified, it may enable further research into potential causes, tests, or treatments.[4][20]

References

  1. ^ https://solvecfs.org/wp-content/uploads/2022/12/New-ICD10-code-MECFS-Handout-for-providers-final12-6-22-1.pdf
  2. ^ https://icdlist.com/icd-10/G93.32
  3. ^ https://icd-11.online/23960
  4. ^ a b c d "UK to launch world's largest genetic study into chronic fatigue syndrome". the Guardian. 2020-06-22. Retrieved 2022-07-31.
  5. ^ a b O'Neill, Sean (2020-06-23). "Chronic fatigue syndrome: Search for genetic clues". The Times. ISSN 0140-0460. Retrieved 2022-07-31.
  6. ^ https://www.decodeme.org.uk/webinar-recording-and-transcript-march-2024/
  7. ^ "Recommendations | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance | NICE". www.nice.org.uk. Retrieved 2022-07-31.
  8. ^ 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.
  9. ^ "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.
  10. ^ a b Carmichael, Hannah (2022-09-11). "People with ME invited to take part in major genetic study". Evening Standard. Retrieved 2022-09-12.
  11. ^ "Major study hopes to tackle ME stigma". The Independent. 2023-09-21. Retrieved 2023-09-22.
  12. ^ a b "People with ME invited to take part in major genetic study". The Independent. 2022-09-11. Retrieved 2022-09-12.
  13. ^ Lewis, Issy (2023-01-31). "What We Achieved in 2022". DecodeME. Retrieved 2023-02-01.
  14. ^ "We've reached 10,000 DNA participants!". Twitter. DecodeME. Retrieved 2023-05-29.
  15. ^ Lewis, Issy (2023-06-16). "Inviting More Participants to Donate DNA". DecodeME. Retrieved 2023-09-22.
  16. ^ "Home". DecodeME. Retrieved 2023-09-22.
  17. ^ Connolly, Anne (2023-11-15). "Closing participant recruitment - Thank you!". DecodeME. Retrieved 2023-11-16.
  18. ^ 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.
  19. ^ "How long will the GWAS study take to complete?". DecodeME. Retrieved 2022-07-31.
  20. ^ "The world's largest study of chronic fatigue syndrome to launch in UK". Happiful Magazine. 2020-06-23. Retrieved 2022-07-31.