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Action for M.E. is thrilled to be a partner in DecodeME, the world’s biggest genetic study into ME/CFS: a project run by, and for, people with M.E./CFS.

The study is being led by the ME/CFS Biomedical Partnership. This collaboration of people with M.E./CFS, carers and advocates as well as researchers 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 and which Action for ME has been a key member of since its inception. Action for ME and the Institute of Genetics at University of Edinburgh are driving the delivery of DecodeME.

Thanks to funding awarded jointly by the Medical Research Council and National Institute for Health Research, work on the DecodeME study is underway. It is hoped that by looking at 20,000 people with M.E./CFS, DecodeME may 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. Understanding this better can also aid the 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. After completing the questionnaire 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. Saliva samples from separate group of people who have been diagnosed with M.E./CFS after having contracted Covid-19 will also be collected and analysed.

The project team are currently working hard behind the scenes to get all the processes in place to start collecting information from our community a safe way.

Many thousands of people from the UK have already shown interested in taking and have signed up to receive updates and notification of when the questionnaire will go live. We are still actively recruiting for more people.

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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 a collaboration of researchers, people with M.E./CFS, carers and advocates, which 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 developing and delivering DecodeME.