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24.06.20

New £3.2m genetic study launched into myalgic encephalomyelitis (ME)

The largest genetic study of its kind has been launched into myalgic encephalomyelitis, or ME, to search for genetic differences that may indicate underlying causes or increase the risk of developing the condition.

Jointly funded by the National Institute for Health Research (NIHR) and the Medical Research Council (MRC), the £3.2m study will analyse samples from 20,000 people with ME and hopes to aid development of diagnostic tests and targeted treatments.

Myalgic encephalomyelitis or ME, also diagnosed as chronic fatigue syndrome (CFS), affects an estimated 250,000 people in the UK. People with ME 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 significant cost to patients, the NHS and wider society, there isn’t a wealth of understanding yet around the causes of ME/CFS or how to effectively treat the condition. Previous research has shown that a greater risk of ME/CFS may, in part, be inherited.

The study has been developed through a partnership between scientists and people with ME/CFS.

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As part of the study, people with ME/CFS across the UK will be asked to volunteer to take part in the study, known as ‘DecodeME’ and can volunteer from home, confirming their eligibility against the selection criteria via a patient questionnaire. Participants will then be mailed a collection kit and asked to send back a saliva sample to be compared with samples from healthy controls.

Aiming to collect 20,000 samples, the partnership will undertake the world’s largest genome-wide association study (GWAS) of ME/CFS.

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, the world’s largest genetic analysis so far, will transform ME/CFS research by injecting much-needed robust evidence into the field.”

Andy Devereux-Cooke, one of the patients leading the study, added: “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 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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