There is much confusion around ME, a condition that affects more than 250,000 Brits of all ages and backgrounds.
Symptoms include pain, brain fog and extreme exhaustion that doesn’t improve with rest.
The key feature of ME (myalgic encephalomyelitis) is a dramatic worsening of symptoms, often delayed, following the most minor of efforts.
Also known as CFS (chronic fatigue syndrome), the cause is unknown and there’s currently no diagnostic test or effective treatment.
But in a bid to understand its underlying mechanisms and assist in the search for effective treatments, experts are to study 25,000 individual DNA samples.
Edinburgh researchers are now inviting people with ME/CFS to take part in what will be the world’s largest genetic study of the condition.
The DecodeME study is searching for the tiny differences in a person’s DNA that can increase their risk of developing ME. They will examine the saliva of 20,000 donated samples from people who have the condition.
The study also includes a post-Covid group, analysing the DNA of a further 5,000 people who have been diagnosed with ME/CFS after Covid-19 infection.
It’s hoped it will reveal genetic factors that are shared between – or distinguish – people diagnosed either pre-Covid or post-Covid. People with ME/CFS aged 16 and over based in the UK are invited to take part from home by signing up at decodeme.org.uk.
Participants who meet the criteria will be mailed a collection kit and then asked to send back a saliva sample to be compared to the DNA of people in the control group.
The work involves the University of Edinburgh, charity Action for ME and the Forward ME alliance of UK charities. A team from the MRC Human Genetics Unit at the University of Edinburgh will head up the scientific analysis.
Leading the team is Professor Chris Ponting, preeminent in the Human Genome Project, an international research effort to map the DNA sequence of the entire human genome.
He says: “The data generated through these questionnaires and genetic analyses will be invaluable in understanding ME/CFS.
“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.
Prof Ponting adds: “Specifically, we believe the results should help identify genes, biological molecules and types of cells that may play a part in causing ME/CFS.”
We’ve waited a long time for this much-needed study.
