The National Institute for Health Research and the Medical Research Council are funding a new UK study that aims to investigate whether there are any genetic anomalies related to the development of myalgic encephalomyelitis (ME).

The DecodeME study will analyse samples from 20,000 people with ME to search for genetic differences that may indicate underlying causes or increase the risk of developing the condition, in the hope of aiding development of diagnostic tests and targeted treatments.

ME, also diagnosed as chronic fatigue syndrome (CFS), affects an estimated 250,000 people in the UK. People experience debilitating symptoms associated with post-exertional malaise, the body and brain’s inability to recover after expending even small amounts of energy.

Despite its high cost to patients, the economy, the NHS and society, very little is known about the causes of the condition and how to treat it effectively. Previous research has shown that a greater risk of ME/CFS may, in part, be inherited, the NIHR noted.

“Our focus will be on DNA differences that increase a person’s risk of becoming ill with ME/CFS. We chose to study DNA because significant differences between people with, and without, ME/CFS must reflect a biological cause of the illness. It is our hope that this study, the world’s largest genetic analysis so far, will transform ME/CFS research by injecting much-needed robust evidence into the field,” noted Professor Chris Ponting, from the MRC Human Genetics Unit at the University of Edinburgh, who is leading the study.

“Unlocking the genetic susceptibility to ME/CFS is a key part of understanding what causes ME/CFS and the disease mechanisms involved. This, in conjunction with other biomedical research into ME/CFS, should finally pave the way to better diagnosis and the development of specific treatments for this debilitating disease,” added Dr Luis Nacul, who co-leads of the study and runs the [HJ-U6] CureME Biobank, from the London School of Hygiene and Tropical Medicine.

‘DecodeME’ is being led by the ME/CFS Biomedical Partnership, with researchers from the MRC Human Genetics Unit at the University of Edinburgh and the London School of Hygiene and Tropical Medicine.

The study is scheduled to begin in September, with recruitment of participants from March 2021.