Thousands of ME/CFS patients to benefit from first genomics study

• The government is investing £4.75 million in the world's largest study of its kind to offer new hope to around 390,000 people living with the condition in the UK
• For the first time, scientists will be able to build a high-resolution genetic map of ME/CFS, paving the way for better diagnostics and future treatments
• The funding builds on the government's earlier investment in the DecodeME study, which created the world's largest ME/CFS research cohort

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 – the government has announced today.

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 Chronic Fatigue Syndrome 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 an 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, jointly with the Medical Research Council.

This announcement forms part of the government's wider commitment to improving care and research for people with ME/CFS, building on the ME/CFS Final Delivery Plan published in July 2025.

The NIHR is also funding two projects to explore the feasibility of a clinical trial that tests multiple interventions for the treatment of post-acute infection syndromes, including ME/CFS.

In addition, the NIHR's £1.4million HERITAGE study aims to help improve the quality of care for these conditions by developing a national service framework (NSF) for long COVID and ME/CFS. This includes training and resources for specialist services and primary care across the UK.

Aisling Baker-Ford, 32 years old, lives in Ayrshire (Scotland) and was diagnosed with Myaglic Encephalomyelitis (ME) in 2022, said:  

I was diagnosed with Myaglic Encephalomyelitis (ME) in 2022 after a 2 and a half year battle with a range of specialists even a neurologist telling me 'it is all in my head'. This unfortunately is a very common occurrence for people like me with this condition.

I hope this funding allows further understanding and to identify significant genetic links of this condition. I hope more awareness of ME and how it can effect someone's life from all levels of the condition and not just the worst, most severe cases. For many people with ME your symptoms can go from severe to moderate to even mild if you are “lucky”. At the moment I am going through the best period I have had since my diagnosis BUT people like myself live in constant fear of a relapse, a day where you wake up and cannot physically get yourself out of bed because you know those severe symptoms will always come back around.

Caroline, Aged 56, Lives in South West England, who has a diagnosis of ME said:  

I am absolutely delighted with the announcement of funding for Sequence ME.  Those of us afflicted with this life changing illness have waited a very long time to have our condition taken seriously enough to warrant funding for reseach.  That this is now happening is both wonderful and such a relief! 

Hopefully for generations going forward - our children, grandchildren and great grandchildren, a diagnosis of ME wont mean a lifetime of suffering in silence and disbelief. There could be new ways to treat symptoms, or better still, a cure.   Thank you from the bottom of my heart on behalf of all the ME community, for listening and helping those of us who live with ME take part in research and have some hope for the future.

STAKEHOLDER COMMENTS

Sonya Chowdhury, Chief Executive, Action for ME, said: 

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.

Dr Charles Shepherd, Hon Medical Adviser, The ME Association, said: 

The ME Association is delighted by the government decision to invest £4.75 million in new research funding to allow vital research into the role of genetics in ME/CFS to continue.

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.

Professor Chris Ponting, DecodeME investigator, University of Edinburgh, said:  

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.