Researchers to conduct the largest genetic study of ME disease 

Researchers to conduct the largest genetic study of ME disease 
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The University of Edinburgh is inviting people with myalgic encephalomyelitis (ME) disease to partake in the world’s largest genetic study. 

The new study named DecodeME will seek to reveal the tiny differences in a person’s DNA that can increase their risk of developing ME disease. The researchers will study 25,000 individual DNA samples to unlock information about the effects of the disease and develop innovative treatments. Furthermore, the study will examine DNA in the saliva of 20,000 donated samples from people with ME disease to investigate if it is genetic and research the cause. 

The study will also include DNA from a further 5,000 people who have been diagnosed with ME after COVID-19 infection. 

What is ME?

ME disease is a long-term condition, and the most common symptom is extreme tiredness. It is usually seen in women and often develops between mid-20s and mid-40s. Other symptoms include still feeling tired after resting or sleeping, taking a long time to recover following physical activity, and problems with sleeping, thinking, memory and concentration. 

Currently, there is no specific test for this condition, and a diagnosis is based solely on symptoms. Due to ME disease symptoms being similar to common illnesses, a diagnosis will usually be considered if the patient does not get better in due course. 

There is no cure for ME, but treatments are available to alleviate the symptoms. 

Do genetics play a role in ME disease?

The researchers are hoping that the project will reveal genetic factors that are shared between or distinguish people with ME disease either pre-COVID or post-COVID. 

The study will include information from an anonymous survey questionnaire completed by participants. The data collected will provide crucial insight into the experience of people with ME disease and an understanding of the quality of life with the condition. 

The research team is inviting anyone with ME aged over 16 and is based in the UK. Participants will be mailed a collection kit and asked to send back a saliva sample to be compared with the DNA of individuals in the control group. 

“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,” commented Professor Chris Ponting, Chair of Medical Bioinformatics and a Principal Investigator at the MRC Human Genetics Unit, Institute of Genetics and Cancer. 



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