This article is about the ongoing study whether ME/CFS has a genetic risk factor. For the defunct genome testing service, see deCODE genetics.
The study's official logo
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.
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]
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]
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]
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]
