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, the government has announced.
Backed by £4.7 million of 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.
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.
Dr. Zubir Ahmed, Health Innovation and Safety Minister, said: "For too long, people with CFS have faced a condition that is poorly understood, difficult to diagnose and without effective treatments.
"This government is determined to change that, and today’s investment is a historic breakthrough in doing so. British scientists are leading the world in genomic research, and this investment puts them at the cutting edge of a challenge that affects hundreds of thousands of people in this country.
"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."
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.
DecodeME was 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.
