Experts launch world's largest genetic study of ME
- Published
Participants will provide saliva samples to be analysed by researchers
People with Myalgic Encephalomyelitis (ME) are being sought to participate in the world's largest genetic study of the disease.
The study, DecodeME, aims to better understand the causes and symptoms of the condition to find treatments.
Those taking part in the University of Edinburgh research will complete an online questionnaire about their health and provide a saliva sample.
Experts are looking for 20,000 people to take part.
More than 250,000 people in the UK are affected by ME but the causes of the disease are still unknown and there is no diagnostic test or effective treatment.
Symptoms include pain, "brain fog" and extreme exhaustion that cannot be improved with rest.
'First sizable DNA study'
It is hoped the study by the MRC Human Genetics Unit, will reveal the tiny differences in a person's DNA that can increase their risk of developing ME, also known as Chronic Fatigue Syndrome (CFS).
Researchers will test 20,000 samples of saliva to analyse whether the disease is partly genetic, and if so, study its cause to find effective treatments.
The study has been expanded to analyse the DNA of an additional 5,000 people who have been diagnosed with ME or CFS after having Covid-19, along with an anonymous survey to gain an insight into the experience of those with the condition.
Lead researcher Prof Chris Ponting said: "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 university is working in partnership with charity Action for ME and the Forward ME alliance of UK charities to study the lived experiences of those with the condition.
Chief executive of Action for ME, Sonya Chowdhury, said: "People with lived experience of ME/CFS are at the very heart of the DecodeME project and our Patient and Participant Involvement 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 or CFS, aged 16 and over, who live in the UK are invited to take part from home by signing up on the DecodeME website, external.