Chronic fatigue syndrome (CFS) patients in the UK are set to benefit from a world-first genomics study into the condition - also known as ME - which affects hundreds of thousands of people nationwide. Backed by £4.7 million of UK Government funding, the study 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 illness.This first-of-its-kind programme cements the UK’s position at the forefront of global genomic research, building on a track record of scientific firsts stretching from the Human Genome Project to the COVID-19 genomic surveillance effort.This breakthrough could unlock the biological causes of the condition for the first time ever, paving the way for better diagnostics and new treatments for those who live with the disease. SequenceME programme ME/CFS causes debilitating fatigue, sleep difficulties and cognitive impairment. Around a quarter of those diagnosed are severely affected, leaving them housebound or unable to work. Despite the scale of its impact, there is limited understanding of the causes and biological mechanisms driving the condition.The SequenceME programme brings together the University of Edinburgh, Action for ME, the European Bioinformatics Institute (EBI) and Oxford Nanopore Technologies, combining world-leading expertise in genomics, patient advocacy and bioinformatics, to deliver a dataset unlike anything previously available anywhere in the world.The investment builds directly on previous funding by the Government for the DecodeME study, which established the world’s largest and most deeply characterised ME/CFS research cohort and laid the scientific foundations for large-scale genomic analysis. Through this world-first genomics study, we are giving scientists the tools they need to understand the biological causes of this illness - laying the groundwork for better diagnostics and new treatments that hundreds of thousands of patients deserve. Dr Zubir Ahmed Health Innovation and Safety Minister 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. Professor Chris Ponting DecodeME investigator, Institute of Genetics and Cancer We are delighted to receive this investment in Sequence ME & Long Covid to enable us to start sequencing DNA samples. However, there is more to do, and this must be only a start to the significant investment in ME/CFS research that is so desperately needed to bring funding to the levels seen in other illness areas. Sonya Chowdhury Chief Executive, Action for ME DecodeME was funded by the Department of Health and Social Care through the National Institute for Health and Care Research, jointly with the Medical Research Council. Related links Read the UK Government press release Chris Ponting Research Group Publication date 12 May, 2026
