#DecodeME study launched
On September 12th 2022 the test phase ended and the world’s largest genetic study was launched in the UK.
They are looking for 25,000 DNA samples and even more people to complete the questionnaire. The study has been expanded to now also include up to 5,000 DNA samples from people who developed ME/CFS after a Covid-19 infection.
You can take part if you meet all the following:
- You have a diagnosis of ME/CFS from a healthcare professional
- You are aged 16 or over
- You live in the UK
Taking part is easy and you can do everything from home
Step 1: Sign up on the website. It only takes a few minutes.
Step 2: Complete the questionnaire. You can take it slowly and pause at any time and return when you’re ready — today or another day.
Step 3: Spit and post. You may also be asked to provide a DNA sample. In this case, you will be sent a ‘spit kit’ which contains everything you need, and you can return it for free via any postbox. Looking at DNA is the best way to find causes of ME/CFS, and to point the way to treatments.
And when you’ve done that, you’ll have joined the world’s biggest study of ME/CFS.
More information:
Decode ME website
Media coverage
BBC: Experts launch world’s largest genetic study of ME
National: University of Edinburgh inviting people living with ME to take part in study
Independent: People with ME invited to take part in major genetic study
Press & Journal: Why 25,000 spit samples could offer hope to Scots with lifelong disease
BBC Radio Bristol: Experts launch world’s largest genetic study of ME
Express: People with Myalgic Encephalomyelitis to take part in world’s largest genetic study
BBC Reporting Scotland: Experts launch world’s largest genetic study of ME
