Study aims to unlock causes of ME/CFS and Long Covid
A major new genome sequencing study aiming to uncover the biological causes of ME/CFS and Long Covid is being led by researchers at the University of Edinburgh.
The Sequence ME and Long Covid project will use advanced long-read whole-genome sequencing technology – capable of analysing all three billion letters in a person’s genetic code – to investigate the biological mechanisms driving these debilitating conditions.
Building on the success of DecodeME – the world’s largest genetic study of ME/CFS – researchers will sequence DNA samples from 6,000 people with ME/CFS already collected through the study.
Treatment targets
The research has been supported by £4.75 million in UK government funding.
The work forms part of a planned £20 million international effort that ultimately aims to analyse the genomes of 9,000 people with ME/CFS and 9,000 people with Long Covid.
Experts say the project could help identify rare and structural genetic changes linked to the conditions, paving the way for improved diagnosis and future targeted treatments.
Collaborative effort
ME/CFS and Long Covid affect millions of people worldwide, yet both conditions remain poorly understood and lack diagnostic tests or effective treatments.
The study brings together researchers from the University of Edinburgh’s Institute of Genetics and Cancer, charity Action for ME, Oxford Nanopore Technologies and the European Molecular Biology Laboratory - European Bioinformatics Institute.
Using Oxford Nanopore’s long-read sequencing technology, scientists will examine the complete genetic code in unprecedented detail, allowing them to detect rare DNA changes and structural variations that are often missed by conventional methods.
By deeply sequencing the complete genomes of 6,000 DecodeME participants using advanced DNA sequencing 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, University of Edinburgh
The project places people with lived experience of ME/CFS and Long Covid at the centre of the research, with patients and carers helping shape priorities and study design.
Funding for the sequencing phase was provided by the UK government and the Medical Research Council, alongside support from the WE&ME Foundation and previous funding from the Schmidt Initiative for Long Covid, the Complex Disorders Alliance, the Solve ME/CFS Initiative and public donations.
We are delighted to receive this investment in Sequence ME & Long Covid to enable us to start sequencing DNA samples. This project builds on DecodeME and creates even greater value from the samples provided by people with ME/CFS. 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. ME/CFS research has been neglected for decades; research in ME/CFS and overlapping illnesses like Long Covid must become a priority. We are very grateful not only to DHSC but also to our charity partners and donors who have helped make this possible.
