Despite its high cost to patients, the economy, the NHS and society, very little is known about the causes of ME, also diagnosed as chronic fatigue syndrome (CFS, or ME/CFS), including how to treat it effectively.
The £3.2 million funding, awarded jointly by the Medical Research Council and National Institute for Health Research, will allow work to begin on DecodeME, the ME/CFS DNA study that hopes to reveal the tiny differences in a person’s DNA that may affect their risk of developing ME/CFS, and the underlying causes of the condition.
DecodeME will look at samples from 20,000 people with ME/CFS, in the hope that the knowledge discovered will aid development of diagnostic tests and targeted treatments.
Co-Principal Investigator Dr Luis Nacul, CureME Biobank at the London School of Hygiene & Tropical Medicine, says: “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.”
ME/CFS affects an estimated 250,000 people in the UK, of all ages, and from all social and economic backgrounds. Post-exertional malaise, an adverse reaction to levels of exertion that many might consider trivial, is often considered to be the defining symptom – this can leave patients suffering from symptoms including extreme levels of fatigue, pain, inability to process information, and light and noise sensitivities. One in four people with ME/CFS are so severely affected they are house- and frequently bed-bound.
Partnering with the MRC Human Genetics Unit at the University of Edinburgh and the London School of Hygiene & Tropical Medicine, the study is being led by the ME/CFS Biomedical Partnership. This collaboration of researchers, people with ME/CFS, carers and advocates has grown out of the UK CFS/ME Research Collaborative (CMRC).
People with ME/CFS across the UK will be asked to volunteer to take part in DecodeME, which they can do from home, confirming they meet the selection criteria via a patient questionnaire already being used by the CureME Biobank. Participants will be mailed a collection kit and asked to send back a saliva or “spit-and-post” sample. These will be compared with samples from healthy controls.”
The samples will enable the Partnership to undertake the world’s largest genome-wide association study (GWAS) of ME/CFS. Such studies have already helped to uncover the biological roots of many other complex diseases, including the identity of genes involved in Type II Diabetes, and the microglia (immune cells of the brain) that play a key role in Alzheimer’s Disease.
Andy Devereux-Cooke, one of the patients leading DecodeME, says: “As someone living with ME/CFS, I’m well aware that the patient community has waited a long time for a study such as this one that has such a strong, genuine element of patient involvement. All of us involved with this research project hope that it can start to address the totally unwarranted stigma and lack of understanding that so many patients with ME/CFS face on a daily basis.”
Principal Investigator Prof Chris Ponting, MRC Human Genetics Unit, University of Edinburgh, says: “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 will transform ME/CFS research by injecting much-needed robust evidence into the field.”
The study is scheduled to begin in September, with recruitment of participants from March 2021. Anyone with ME/CFS aged 16 years or over who wants to take part in the DecodeME study can register online.