DecodeME explained

DecodeME is an ongoing genome-wide association study searching for genetic risk factors for ME/CFS. With a planned recruitment of 25,000 patients, it is expected to be the largest such study to date.[1] Recruitment closed on 15 November 2023 and results are expected in 2024.

Background

ME/CFS is a chronic medical condition that often causes significant disability, and whose cause is unknown.[2] 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.[3]

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.[5] [6]

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.[7]

History

The study announced receipt of funding in June 2020, and recruitment was opened on 12 September 2022.[8] In January 2023, the team wrote that over 17,000 patients had completed the survey, of which almost 9,000 were sent collection kits.[9] On 2 May 2023 they announced that over 10,000 people had been asked to provide samples.[10]

In June 2023, DecodeME made changes to their data analysis methodology that allowed them to invite additional participants to give DNA.[11] Recruitment is expected to close on 15 November.[12] Recruitment for the study closed on 15 November 2023.[13]

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.[14] There will also be a survey to collect data on symptoms. Results are expected to be published by September 2024.[15] If new risk factors are identified, it may enable further research into potential causes, tests, or treatments.[16]

References

  1. News: O'Neill . Sean . 2020-06-23 . Chronic fatigue syndrome: Search for genetic clues . The Times . 2022-07-31 . 0140-0460.
  2. Web site: Recommendations Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management Guidance NICE . 2022-07-31 . www.nice.org.uk.
  3. 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 . en . 102 . 362–369 . 10.1016/j.bbi.2022.03.010 . 35318112 . 247549585 . 0889-1591. free . 10852/94241 . free .
  4. Web site: 2020-06-22 . UK to launch world's largest genetic study into chronic fatigue syndrome . 2022-07-31 . the Guardian . en.
  5. Web site: How will you ensure that you have the support of the community of people with ME/CFS for this project? . 2022-07-31 . DecodeME . en-GB.
  6. Web site: Carmichael . Hannah . 2022-09-11 . People with ME invited to take part in major genetic study . 2022-09-12 . Evening Standard . en.
  7. Web site: 2023-09-21 . Major study hopes to tackle ME stigma . 2023-09-22 . The Independent . en.
  8. Web site: 2022-09-11 . People with ME invited to take part in major genetic study . 2022-09-12 . The Independent . en.
  9. Web site: Lewis . Issy . 2023-01-31 . What We Achieved in 2022 . 2023-02-01 . DecodeME . en-GB.
  10. Web site: We've reached 10,000 DNA participants! . 2023-05-29 . Twitter . DecodeME . en.
  11. Web site: Lewis . Issy . 2023-06-16 . Inviting More Participants to Donate DNA . 2023-09-22 . DecodeME . en-GB.
  12. Web site: Home . 2023-09-22 . DecodeME . en-GB.
  13. Web site: Connolly . Anne . 2023-11-15 . Closing participant recruitment - Thank you! . 2023-11-16 . DecodeME . en-GB.
  14. 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 . 10.1186/s12883-022-02763-6. 35854226 . 9294749 . free .
  15. Web site: How long will the GWAS study take to complete? . 2022-07-31 . DecodeME . en-GB.
  16. Web site: 2020-06-23 . The world's largest study of chronic fatigue syndrome to launch in UK . 2022-07-31 . Happiful Magazine . en.

External links

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