DecodeME
| DecodeME | |
|---|---|
| File:DecodeME Study Logo.svg The study's official logo | |
| Purpose | Research (DNA) |
| ICD-10-PCS | G93.32.[1][2] |
DecodeME is a 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 preliminary results were published in a preprint on 7 August 2025.[6]
Background
[edit | edit source]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
[edit | edit source]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 for the study closed on 15 November 2023.[16] A preprint of the preliminary results was released on 7 August 2025.[6]
Methodology
[edit | edit source]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][17] There will also be a survey to collect data on symptoms.[12] If new risk factors are identified, it may enable further research into potential causes, tests, or treatments.[4][18]
References
[edit | edit source]- ^ https://solvecfs.org/wp-content/uploads/2022/12/New-ICD10-code-MECFS-Handout-for-providers-final12-6-22-1.pdf [bare URL PDF]
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- ^ https://icd-11.online/23960
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External links
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