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.

Not to be confused with Decode Entertainment.

DecodeME is an ongoing 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.^[3][4] Recruitment closed on 15 November 2023 and results are expected in 2025.^[5]

DecodeME
The study's official logo
Purpose	Research (DNA)
ICD-10-PCS	G93.32.[1][2]

Background

ME/CFS is a chronic medical condition that often causes significant disability, and whose cause is unknown.^[6] 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.^[7]

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.^[3] 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.^[8][9]

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.^[10]

History

The study announced receipt of funding in June 2020, and recruitment was opened on 12 September 2022.^[3][9][11] In January 2023, the team wrote that over 17,000 patients had completed the survey, of which almost 9,000 were sent collection kits.^[12] On 2 May 2023 they announced that over 10,000 people had been asked to provide samples.^[13]

In June 2023, DecodeME made changes to their data analysis methodology that allowed them to invite additional participants to give DNA.^[14] Recruitment is expected to close on 15 November.^[15] Recruitment for the study closed on 15 November 2023.^[16]

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.^[4][17] There will also be a survey to collect data on symptoms.^[11] Results are expected to be published by September 2024.^[18] If new risk factors are identified, it may enable further research into potential causes, tests, or treatments.^[3][19]