The hunt for genes to unravel the mystery of myalgic encephalomyelitis begins

The search for the genetic signal for one of the world's most mysterious diseases is led by researchers at the Institute of Genetics and Cancer in Edinburgh.

People diagnosed with myalgic encephalomyelitis (ME) are being invited to participate in the world's largest genetic study of the disease.

The DecodeME study will try to uncover the tiny differences in a person's DNA that may increase their risk of developing ME - also known as chronic fatigue syndrome (CFS).

Experts will study 25,000 individual DNA samples to understand the underlying mechanisms of the disease and help find effective treatments.

DecodeME will analyse DNA in the saliva of 20,000 donated samples from people with ME to determine whether the disease is partly genetic, and if so, to explore its cause.

The study also includes a "post-covid" arm, in which DNA will be analysed from an additional 5,000 people diagnosed with ME /CFS following covid-19 infection.

Genetic factors

It is hoped that the DecodeME project will uncover genetic factors that are consistent between or distinguish individuals who have been clinically diagnosed with ME / CFS either before or after Covid. 

The study will collect information using an anonymous questionnaire for participants. The resulting findings will provide insight into the experiences of people with ME / CFS and an understanding of what it is like to live with this complex condition. 

People with ME / CFS aged 16 and over from the UK are invited to participate from home by registering on the DecodeME website: https://www.decodeme.org.uk/

Participants who meet the study criteria will receive a collection kit in the mail and will be asked to send in a saliva sample to be compared with DNA from people in the control group.

It is estimated that ME / CFS affects more than a quarter of a million people in the UK, across all age groups and from all social and economic backgrounds.

The main feature is a dramatic, often delayed, worsening of symptoms after a small amount of exertion. Symptoms include pain, brain fog, and extreme fatigue that do not improve with rest. The causes are unknown, and there is currently no diagnostic test or effective treatments.

Partners of the study

The study involves the University of Edinburgh, the charity Action for ME, the Forward ME alliance of UK charities and people affected by the disease. The study is funded by the Medical Research Council and the National Institute for Health Research.

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

The data generated through these questionnaires and genetic analyses will be invaluable in understanding ME/CFS. 

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.

Professor Chris Ponting Institute of Genetics and Cancer

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

Sonya Chowdhury Chief Executive of Action for ME and Chair of the Management Group of the study

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