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 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][2] Recruitment closed on 15 November 2023 and results are expected in 2024.

The study's official logo

Background

ME/CFS is a chronic medical condition that often causes significant disability, and whose cause is unknown.^[3] 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.^[4]

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.^[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.^[1][6][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.^[2][14] There will also be a survey to collect data on symptoms.^[8] 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.^[1][16]

References

1. "UK to launch world's largest genetic study into chronic fatigue syndrome". the Guardian. 2020-06-22. Retrieved 2022-07-31.
2. O'Neill, Sean (2020-06-23). "Chronic fatigue syndrome: Search for genetic clues". The Times. ISSN 0140-0460. Retrieved 2022-07-31.
3. "Recommendations | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance | NICE". www.nice.org.uk. Retrieved 2022-07-31.
4. 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.
5. "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.
6. Carmichael, Hannah (2022-09-11). "People with ME invited to take part in major genetic study". Evening Standard. Retrieved 2022-09-12.
7. "Major study hopes to tackle ME stigma". The Independent. 2023-09-21. Retrieved 2023-09-22.
8. "People with ME invited to take part in major genetic study". The Independent. 2022-09-11. Retrieved 2022-09-12.
9. Lewis, Issy (2023-01-31). "What We Achieved in 2022". DecodeME. Retrieved 2023-02-01.
10. "We've reached 10,000 DNA participants!". Twitter. DecodeME. Retrieved 2023-05-29.
11. Lewis, Issy (2023-06-16). "Inviting More Participants to Donate DNA". DecodeME. Retrieved 2023-09-22.
12. "Home". DecodeME. Retrieved 2023-09-22.
13. Connolly, Anne (2023-11-15). "Closing participant recruitment - Thank you!". DecodeME. Retrieved 2023-11-16.
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. doi:10.1186/s12883-022-02763-6. PMC 9294749. PMID 35854226.
15. "How long will the GWAS study take to complete?". DecodeME. Retrieved 2022-07-31.
16. "The world's largest study of chronic fatigue syndrome to launch in UK". Happiful Magazine. 2020-06-23. Retrieved 2022-07-31.

External links

• Official Site