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ME gene study to shed light on causes


The world’s largest genetic study into ME has been launched following a multi-million pound funding boost.

Scientists say the research – backed by £3.2m from the Medical Research Council and the National Institute for Health Research – could help pinpoint targets for treatments and improve diagnosis for people living with the condition.

Myalgic encephalomyelitis – known as ME, or chronic fatigue syndrome (CFS) – causes extreme levels of exhaustion and pain and can affect thinking skills. One in four people with ME are so severely affected that they are house-bound.

ME is incurable and much remains unknown about its causes, although there is evidence that it can run in families. Many previous studies have been too small to make firm conclusions.

The new project – known as Decode ME – will compare tiny differences in a patient’s DNA with those from people from the general population.

Scientists plan to scan the DNA of 20,000 people with ME in a genome-wide association study (GWAS) – a large gene search that can help to pinpoint changes linked to disease.

Participants will be mailed a collection kit and asked to send back a saliva sample, known as a spit-and-post approach.

The study is led from the University of Edinburgh as part of the ME/CFS Biomedical Partnership, a collaboration of researchers, patients, carers and advocates.

ME affects an estimated 250,000 people in the UK and has an economic cost of at £3.3 billion per year.

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

Professor Chris Ponting, University of Edinburgh, said ” 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.”

Andy Devereux-Cooke, Patient lead for Decode ME, 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.”