UK to sequence genomes of 6,000 ME/CFS patients for treatment clues
A Government-funded study will sequence the genomes of up to 6,000 patients with chronic fatigue syndrome to guide better diagnosis and targeted treatments.
The £4.75m research project is the largest of its kind and will generate a high-resolution genetic map of the illness.
Scientists hope it could unlock the biological causes of ME/CFS which causes debilitating fatigue, sleep difficulties and cognitive impairment.
It is thought that 390,000 people in the UK live with the condition and 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 underpinning it, the government said.
The work will build on the earlier DecodeME study, which created the world’s largest ME/CFS research cohort.
Known as the SequenceME programme, it will bring together work at the University of Edinburgh, Action for ME, the European Bioinformatics Institute (EBI) and Oxford Nanopore Technologies.
Dr Zubir Ahmed – before resigning last week as health innovation and safety minister – said for too long, people with ME/CFS had faced a condition that is ‘poorly understood, difficult to diagnose and without effective treatments’.
‘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.’
Professor Chris Ponting, DecodeME investigator at the University of Edinburgh, said deep sequencing the complete genomes of 6,000 DecodeME participants using advanced long-read technology, will enable the team 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.’
The announcement is part of the government’s wider commitment to improving care and research for people with ME/CFS, under plans published in July 2025.
Two other projects are also exploring the feasibility of a clinical trial that tests multiple interventions for the treatment of post-acute infection syndromes, including ME/CFS.
In addition, the £1.4m HERITAGE study is working to develop a national service framework (NSF) for long COVID and ME/CFS to improve quality of care, including training and resources for specialist services and primary care.
Sonya Chowdhury, chief executive, Action for ME, said the project should just be the start.
‘ME/CFS research has been neglected for decades; research in ME/CFS and overlapping illnesses like Long Covid must become a priority.’
Dr Charles Shepherd, honorary medical adviser at The ME Association, said: ‘Building on the findings from DecodeME, SequenceME should provide a better understanding of the underlying disease process, in particular how the immune and nervous systems respond to a triggering infection in ME/CFS.
‘For people with ME/CFS there is now real hope that we have a route to finding a much-needed diagnostic biomarker blood test and effective forms of treatment.’
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