Internet Explorer is no longer supported by Microsoft. To browse the NIHR site please use a modern, secure browser like Google Chrome, Mozilla Firefox, or Microsoft Edge.

People diagnosed with ME invited to take part in world’s largest genetic study of the disease

Published: 26 September 2022

People diagnosed with myalgic encephalomyelitis (ME) are invited to take part in the world’s largest genetic study of the disease. 

The DecodeME study hopes to reveal the tiny differences in a person’s DNA that can increase their risk of developing ME, sometimes known as chronic fatigue syndrome (CFS). It aims to build a greater understanding of the underlying mechanisms of the disease and assist in the search for effective treatments by testing 25,000 individual DNA samples. 

DecodeME will analyse DNA in the saliva of 20,000 donated samples from people with ME/CFS to explore whether the disease is partly genetic.

The study includes a ‘post-COVID’ arm, analysing the DNA of a further 5,000 people who have been diagnosed with ME after COVID-19 infection.

Researchers hope to reveal genetic factors that are shared between individuals who have been clinically diagnosed with ME either before and after contracting COVID.

Alongside the DNA research, the study will include information gathered from an anonymous survey questionnaire for participants. This evidence will provide valuable insight into the experience of people with ME/CFS and an up-to-date understanding of what it is like to live with this complex condition. 

ME/CFS has been estimated to affect more than a quarter of a million people in the UK, of all ages and from all social and economic backgrounds. Its key feature is a dramatic worsening of symptoms, often delayed, following minor effort. Symptoms include pain, ‘brain fog’, and extreme exhaustion that does not improve with rest. Causes of the disease are unknown and there is currently no diagnostic test or effective treatments.

A team of genetics experts at the MRC Human Genetics Unit at the University of Edinburgh will lead the scientific analysis of the study, led by Professor Chris Ponting. Professor Ponting was involved in the Human Genome Project, an international research effort to map the DNA sequence of an entire human genome.

Professor Ponting said: “Genome-wide association studies, like the DecodeME study, have already proved successful in helping to uncover the biological roots of many other complex diseases including type 2 diabetes and Alzheimer’s disease. This is the first sizable DNA study of ME/CFS, and any differences we find compared to control samples will serve as important biological clues. Specifically, we believe the results should help identify genes, biological molecules and types of cells that may play a part in causing ME/CFS.”

The study is a co-production involving the University of Edinburgh, the charity Action for M.E., the Forward ME alliance of UK charities and people with lived experience of ME/CFS. The study is funded by the Medical Research Council (MRC) and NIHR. 

Sonya Chowdhury, Chief Executive of Action for M.E. and Chair of the Management Group of the study, adds: “People with lived experience of ME/CFS are at the very heart of the DecodeME project and our Patient and Participant Involvement (PPI) group has worked closely with researchers on all aspects of the study. Their profound involvement has been so transformational that we firmly believe it sets a new standard for health research in this country.”

Individuals with ME/CFS aged 16 and over and based in the UK are invited to take part from home by signing up on the DecodeME website. Following an initial questionnaire, participants who meet the study’s criteria will be mailed a collection kit and asked to send back a saliva sample to be compared to the DNA of individuals in the control group.

The study is led by the DecodeME Partnership which uniquely brings together a collaboration of researchers, people with ME/CFS, carers and the public to advance understanding of the disease.

Latest news