World's largest study of chronic fatigue syndrome under way

Myalgic encephalomyelitis (ME) is estimated to affect more than 250,000 people in the UK.

World’s largest study of chronic fatigue syndrome under way at University of Edinburgh iStock

Scottish researchers have launched the world’s largest genetic study of the causes of chronic fatigue syndrome.

The DecodeME study, led by the University of Edinburgh, will seek to reveal the tiny differences in a person’s DNA that can increase their risk of developing the condition – also known as myalgic encephalomyelitis (ME).

The disease is estimated to affect more than one quarter of a million people in the UK of all ages and from all socioeconomic backgrounds.

Its key feature is a dramatic worsening of symptoms following minor effort, including pain, brain fog and extreme exhaustion that does not improve with rest.

Scientists will analyse 25,000 individual DNA samples in a bid to understand the underlying mechanisms of the disease and assist in the search for effective treatments.

Causes of chronic fatigue syndrome are so far unknown and there is currently no diagnostic test or any effective treatments.

A team from the MRC Human Genetics Unit at the University of Edinburgh will lead scientific analysis of the study.

“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,” said Professor Chris Ponting, lead of the team at the MRC.

“This is the first sizable DNA study of ME/chronic fatigue syndrome, and any differences we find compared to control samples will serve as important biological clues.”

DecodeME will look at the saliva samples of 20,000 people with ME, to explore whether the disease is at least partly genetic – and if so, research its cause.

The study also includes a “post-Covid” portion, analysing the DNA of a further 5,000 people who have been diagnosed with ME after Covid-19 infection.

Scientists hope the project will reveal genetic factors that are shared between people who were diagnosed with the disease either pre-Covid or post-Covid.

It will also include information gathered from an anonymous survey for participants, which will seek to offer insight into the experience of people with chronic fatigue syndrome.

Volunteers who wish to take part in DecodeME and meet its criteria will be mailed a collection kit and asked to send back a saliva sample.

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

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