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"We can make DecodeME a success by working together."

June 25, 2020

Sonya Chowdhury, our Chief Executive, reflects on the years of dedication and collaboration by so many, that have led to this week's launch of DecodeME, the ME/CFS DNA study.

Nearly eight years ago, in my first week with Action for M.E., Prof Stephen Holgate set out his expectation of me in my new role. He told me that my predecessor had helped plan the idea of the UK CFS/ME Research Collaborative (CMRC) to bring together UK researchers, to increase investment in research. He wanted to know who we were inviting to the first meeting in just two weeks’ time.

This drive, expectation and no-nonsense approach is what has led to the £3.2m funding announced this week for the DecodeME study, the world’s largest DNA study into this disabling illness that affects millions worldwide. Stephen’s leadership has been a personal inspiration to me and I feel very privileged to have worked alongside him.

Stephen has told the story, many times, of how he saw people with M.E. in his clinic and, with them, starting the journey of tackling the neglect of children and adults with M.E.

In 2012, the CMRC aspiration was clear but it has taken years of work, alongside people with M.E., researchers and the funding bodies who invited us to apply for funding set aside for a genetic study. At the very heart of this work has been the Patient Advisory Group, people with M.E. and carers who have played an incredible role in turning our collective aspiration into a reality. Their challenge, critique and guidance has helped steer the CMRC through lots of tricky moments, and ensured we have maintained our focus.

Action for M.E. has provided the Secretariat support for the CMRC throughout, and organising the annual conferences has been a key part of this. What I hadn’t expected that we would also play such a significant part in the ME/CFS Biomedical Partnership, was set up to develop and deliver DecodeME - but I am so very glad we were asked to do so. Working alongside Prof Chris Ponting, Dr Eliana Lacerda, Andy Devereux-Cooke, Simon McGrath, the Patient and Public Involvement Steering Group, London School of Hygiene & Tropical Medicine and University of Edinburgh, plus my colleagues at Action for M.E. and marketing agency Itineris, we have a very big job ahead of us.

Recruiting 20,000 people with M.E. to provide a saliva sample may seem straightforward, but not everyone who has a diagnosis will be able to participate. Thish doesn’t mean they don’t have M.E. but rather that the strict research criteria we are using are very specific. We will be posting out ‘spit kits’ so that those who meet the criteria can provide a saliva sample and post it back to be analysed.

We probably need around 40,000 people to sign up to make sure we get the 20,000 samples we need and that’s a challenge!

We can only achieve this now because of the invaluable contribution of so many others in the past. And we can only achieve what we hope to in the future by working with many more people now, and that includes you. Please sign up to support the DecodeME study. If you are over 16, have a diagnosis of M.E./CFS and live in the UK, we will let you know when you can register to take part in the study itself, starting in March next year. If you don’t, you can still help by spreading the word and encouraging others to sign up and take part.

Working alongside you, professionally as CEO, and personally, as a parent of a son with M.E., is a real honour. We can only make DecodeME a success by working collaboratively together.