Thousands of chronic fatigue patients are having their DNA sequenced in a new UK research programme
Key Points
- SequenceME is sequencing the complete genomes of up to 6,000 people with ME, also known as chronic fatigue syndrome.
- The Department of Health and Social Care put £4.7 million into the programme in May 2026.
- Partners are the University of Edinburgh, Action for ME, the European Bioinformatics Institute and Oxford Nanopore Technologies.
- ME has no diagnostic test, no approved treatment and no established biological cause.
- The consortium is seeking funding for a larger £20 million study covering 9,000 ME patients and 9,000 long Covid patients.
SequenceME, a £4.7 million government-funded programme, is sequencing the entire genomes of up to 6,000 people with ME.
Oxford Nanopore Technologies, the Oxford company supplying the sequencing technology, named the programme as one of the main drivers of its research revenue in interim results published on Wednesday (19 August).
The University of Edinburgh, Action for ME and the European Bioinformatics Institute make up the rest of the consortium. The Department of Health and Social Care announced the funding in May 2026, and the analysis will run under Chris Ponting at Edinburgh and Ewan Birney at the European Bioinformatics Institute.
ME, which the NHS also calls chronic fatigue syndrome, affects hundreds of thousands of people in the UK.
The condition has no diagnostic test, no approved treatment and no agreed biological cause, and doctors diagnose it by ruling other illnesses out.
Symptoms include exhaustion that worsens sharply after minimal physical or mental effort, unrefreshing sleep, pain and cognitive difficulty.
How the sequencing works
SequenceME uses long-read sequencing, which reads long continuous stretches of DNA rather than the short fragments most genetic studies rely on. That approach picks up rare variants and larger structural changes in the genome that shorter reads miss.
The programme covers all three billion letters of each participant’s genetic code, and researchers will use the resulting map to search for the genes driving the illness, with immune and nervous system pathways among the priorities.
The samples come from DecodeME, the world’s largest genetic study of ME, which recruited more than 17,000 people who donated saliva by post.
More than 17,000 DecodeME participants consented to further analysis of their samples.
The Department of Health and Social Care funded DecodeME through the National Institute for Health and Care Research alongside the Medical Research Council.
The same partners are seeking funding for a larger follow-on study, Sequence ME & Long Covid, which would sequence 9,000 people with ME and 9,000 with long Covid at a cost of around £20 million.
One aim of that work is to establish whether ME is a single illness or an umbrella term covering several distinct conditions.
The partners have not published a date for results from the current programme.
