Join us to help create the world’s biggest study of the causes of ME/CFS

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We are the ME/CFS Biomedical Partnership, a collaboration between researchers and people with ME/CFS, carers and the public.

The DecodeME DNA study aims to help us understand the disease and ultimately find treatments.

We have secured funding for a very large study to analyse DNA from the saliva of people with ME/CFS to see whether the disease is partly genetic and if so, help pinpoint what causes it. The study should help us understand the disease and ultimately find treatments.

We need 20,000 participants – and people to help us find them. If you’re interested, please let us know now, so that when the study launches in early 2021, we can start reaching out to potential participants and collecting samples immediately.

It will be a huge challenge to do the largest ever biomedical study of ME/CFS so we need your help – whether you have ME/CFS or not!

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The largest ever DNA study of ME/CFS

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We’re focusing on recruiting from the UK for now and are already well on our way with early sign-ups. But we’ll expand to other countries if necessary, so if you’re outside the UK, please do sign up now. You must be 16 or over to take part.

The study is being led by Professor Chris Ponting of the Medical Research Council Human Genetics Unit at the University of Edinburgh in collaboration with the UK ME/CFS Biobank at the London School of Hygiene & Tropical Medicine.

People with ME/CFS are at the heart of the study, with a patient and a carer as co-investigators alongside the scientists and a steering group of people with the illness, carers and charities. The work is funded by the Medical Research Council and the National Institute for Health Research.

To find out more about the study you can read our latest updates, FAQs and our explanation of the science.

This is an historic opportunity for people with ME/CFS and we look forward to working with you to make it happen.

Complete this short form to get involved:

Our ‘Plan A’ is to recruit within the UK only, and that is how we will start the study. Should additional participants be required we may open to non-UK participants at a later date.

If you are based outside of the UK we would encourage you to use the form below to sign up to our newsletters.

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