DecodeME, the world’s largest study of chronic fatigue syndrome to launch in UK

Katie Hoare
By Katie Hoare,
updated on Jun 23, 2020

DecodeME, the world’s largest study of chronic fatigue syndrome to launch in UK

A new study brings hope for thousands as the world's largest genetic study of chronic fatigue syndrome is set to launch in 2021

A partnership between UK scientists and patients with chronic fatigue syndrome (CFS) is launching the world’s largest DNA study of CFS, after securing £3.2m of funding from the Medical Research Council and National Institute for Health Research.

The condition, thought to affect 250,000 people in the UK has debilitating symptoms that often leave sufferers bed-bound. This pioneering study 'aims to shine a light on the debilitating long-term condition.' There isn't currently a cure for CFS, also known as myalgic encephalomyelitis (ME).

The DecodeME study will take part in early 2021 and will analyse DNA from the saliva of sufferers with CFS/ME. The hope is to determine if the disease is partly genetic, which will help to identify what causes it, and find effective treatment.

The biomedical study is looking for 20,000 participants who are 16 or over and have CFS/ME, and are interested in speaking with carers as well.

Speaking to The Guardian, Professor Chris Ponting of the Medical Research Council 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.”

This study brings hope to thousands of patients who often face stigma and judgement (the condition is often misconstrued as ‘being tired’), as a result of a deep misunderstanding of the symptoms patients deal with on a daily basis.

The main symptom of chronic fatigue syndrome is extreme physical and mental exhaustion, that doesn’t ease with rest and sleep. Other symptoms can include memory loss, poor concentration, muscle and joint pain, headache, swollen glands, heart palpitations and extreme sensitivity to light and temperature.

As with any chronic condition, the severity of the symptoms can range from mild to severe, and can often change on a daily basis.

If you struggle with CFS/ME and would like to volunteer to take part, you can sign up with the study’s website. When the study begins, you’ll be mailed a secure collection kit which you can send back your saliva sample for researchers to compare against on-sufferers.

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