DecodeME

DecodeME is an ongoing genome-wide association study that will search 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] and results are expected in 2024.

Logo saying DecodeME: The ME/CFS Study, with ME in a green circle
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]

History

The study announced receipt of funding in June 2020, and recruitment was opened on 12 September 2022.[1][6][7] In January 2023, the team wrote that over 17,000 patients had completed the survey, and almost 9,000 were sent collection kits.[8]

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 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][9] There will also be a survey to collect data on symptoms.[7] Results are expected to be published by September 2024.[10] If new risk factors are identified, it may enable further research into potential causes, tests, or treatments.[1][11]

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. 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. "People with ME invited to take part in major genetic study". The Independent. 2022-09-11. Retrieved 2022-09-12.
  8. Lewis, Issy (2023-01-31). "What We Achieved in 2022". DecodeME. Retrieved 2023-02-01.
  9. 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, and 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.{{cite journal}}: CS1 maint: uses authors parameter (link)
  10. "How long will the GWAS study take to complete?". DecodeME. Retrieved 2022-07-31.
  11. "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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