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In June 2020, people with M.E., scientists and advocates celebrated the announcement of £3.2m funding for DecodeME, the largest ever M.E./CFS DNA study.

Action for M.E. is thrilled that, thanks to funding awarded jointly by the Medical Research Council and National Institute for Health Research, work begins on DecodeME in September 2020, hoping to reveal the tiny differences in a person’s DNA that may affect their risk of developing M.E./CFS, and the underlying causes of the condition.

DecodeME will look at samples from 20,000 people with ME/CFS, with the aim that the knowledge discovered will aid development of diagnostic tests and targeted treatments.

People with M.E./CFS across the UK are being asked to volunteer to take part in DecodeME, which they can do from home, confirming they meet the selection criteria via a patient questionnaire already being used by the CureME Biobank. Participants will be mailed a collection kit and asked to send back a saliva or “spit-and-post” sample. These will be compared with samples from healthy controls.

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Who is leading DecodeME?

Partnering with Action for M.E., the MRC Human Genetics Unit at the University of Edinburgh, and the London School of Hygiene and Tropical Medicine, the study is being led by the ME/CFS Biomedical Partnership. This collaboration of researchers, people with M.E./CFS, carers and advocates has grown out of the UK CFS/ME Research Collaborative (CMRC), established in 2013 by Prof Stephen Holgate, MRC Clinical Professor of Immunopharmacology at the University of Southampton.

Our CEO Sonya Chowdhury chairs the study's Management Group and Public/Patient Involvement Group. Writing about it the launch of the study, she said:

"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. We are proud and excited to play a significant part in the ME/CFS Biomedical Partnership, set up to develop and deliver DecodeME. 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, we have a very big job ahead of us.