On International ME Awareness Day (12th May) the UK government announced via a Press Release £4.75m in funding for the University of Edinburgh to coordinate a world-first genomics study which will enable the SequenceME programme to sequence the genomes of up to 6,000 ME/CFS patients, generating a world-first high-resolution genetic map of the disease. The SequenceME programme brings together researchers from University of Edinburgh, the European Bioinformatics Institute, and Oxford Nanopore Technologies.
SequenceME builds upon the DecodeME study (funded by the Department of Health and Social Care through the National Institute for Health and Care Research (NIHR), jointly with the Medical Research Council), which established the world’s largest and most deeply characterised ME/CFS research cohort and laid the scientific foundations for large-scale genomic analysis and, as the Press Release narrates, ” .. forms part of the government’s wider commitment to improving care and research for people with ME/CFS, building on the ME/CFS final delivery plan published in July 2025.”
As Professor Chris Ponting, DecodeME investigator, University of Edinburgh, said:
By deeply sequencing the complete genomes of 6,000 DecodeME participants using advanced long-read technology, this project will allow us to pinpoint individual genes disrupted in ME/CFS, moving beyond broader chromosomal signals identified to date. Crucially, it offers the potential to uncover patterns of familial inheritance and to break down this complex disease into its underlying biological causes – bringing us closer to more precise diagnosis and, ultimately, targeted treatments.
Initially funded for 6,000 samples from the DecodeME study, it is hoped that funding can be secured to map to sequence the genome of 9,000 people with ME/CFS and 9,000 with Long Covid. Although DecodeME found a genetic signal in eight small regions of DNA, these contain dozens of genes, which, due to limnitations in the technology used, was unable to discern which genes are involved in ME/CFS. The involvement of Oxford Nanopore Technologies means that the study will sequence almost all of the 3 billion chemical ‘letters’ in the human genome. Full sequencing and analysis of 6,000 DNA samples is expected to be completed by early April 2027.
