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The largest genetic study into myalgic encephalomyelitis in the UK, led by a partnership of patients and scientists, is launched

23 Jun 2020

A new study has been funded to analyse samples from 20,000 people with myalgic encephalomyelitis (ME), also diagnosed as chronic fatigue syndrome (CFS, or ME/CFS), to search for genetic differences that may indicate underlying causes or increase the risk of developing the condition.

The study, ‘DecodeME’, is jointly funded by the MRC and National Institute for Health Research (NIHR) with £3.2 million (£1.8 million MRC, £1.4 million NIHR) and hopes to aid development of diagnostic tests and targeted treatments.

ME/CFS affects an estimated 250,000 people in the UK, of all ages, and from all social and economic backgrounds. This debilitating set of conditions 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.

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

Professor Chris Ponting, from the MRC Human Genetics Unit at the University of Edinburgh, who is leading the study, 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 has been developed through a partnership between scientists and people with ME/CFS at the heart of the study, which has been designed with input from a dedicated Public and Patient Involvement Steering Group from the inception stage. The PPI Steering Group is made up of people representing groups or networks from the ME/CFS community including patients, expert clinicians and representatives from most UK charities.

Andy Devereux-Cooke, one of the patients leading the study, said: “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."

The 20,000 samples will enable the partnership to undertake one of 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.

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.

Dr Luis Nacul, who co-leads of the study, from the London School of Hygiene and Tropical Medicine and the CureME Biobank, said: “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.”

Sonya Chowdhury, Chief Executive, Action for M.E., and Chair of the study management group, said: “Simply put, we cannot do this without the determination and support of people with ME/CFS. Recruiting the 20,000 people we need is challenging – but absolutely achievable, by working in partnership with the CureME Biobank, charities, patient advocates, local support groups and others. People with ME/CFS can register their interest right now on the DecodeME website.”

Professor Fiona Watt, Executive Chair of the MRC, said: “This project is very significant in its scale and ambitions. It is one of the biggest studies into potential genetic connections to ME/CFS and I would like to congratulate Prof Chris Ponting and his colleagues on this award. It signals the shared commitment of funders, researchers and patients to work together to gain new insights into ME/CFS.”

Dr Louise Wood, joint head of the NIHR, said: “I am pleased to see the research teams in Edinburgh and the London School of Tropical Medicine, and patient groups, come together to take forward this important project which seeks to shine a light on the causes of ME/CFS for the benefit of people living with this debilitating condition. Patient involvement - one of NIHR's key values – has been embedded throughout, bringing huge relevance and value to the project.”

The study, called ‘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. This collaboration of researchers, people with ME/CFS, carers and advocates has grown out of the UK CFS/ME Research Collaborative (CMRC), established in 2013 by Prof Stephen Holgate, MRC Clinical Professor of Immunopharmacology at the University of Southampton.

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 their interest now.

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