Our research work

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Action for M.E. is thrilled to be co-leading in partnership with the University of Edinburgh the world’s largest genetic study into M.E./CFS. The study is funded by the Medical Research Council (MRC) and the National Institute for Health Research (NIHR).

DecodeME hopes to reveal the tiny differences in a person’s DNA that can increase their risk of developing M.E./CFS, building a greater understanding of the underlying mechanisms of the condition. These insights will go towards the search for effective treatments by testing 25,000 individual DNA samples. The team will analyse DNA in the saliva of 20,000 donated samples from people with M.E., to explore whether the condition is partly genetic and if so, research its cause.

In August 2021, it was agreed to expand the study to 5,000 people who were diagnosed with M.E./CFS after having COVID-19. In total, over 30,000 people in the UK have registered interest to take part in DecodeME.

Alongside DNA research, the study will include information gathered from an anonymous survey questionnaire for participants. The evidence from this will provide valuable insight into the experience of people with M.E./CFS and an up-to-date understanding of what it is like to live with the condition.

A team of genetics experts at the MRC Human Genetics Unit at the University of Edinburgh will lead the scientific analysis of the study, led by Chris Ponting. Professor Ponting was notably involved in the Human Genome Project, an international research effort to map the DNA sequence of an entire human genome. When asked about the DecodeME project Chris Ponting says:

‘Genome-wide association studies, like the DecodeME study, have already proved successful in helping to uncover the biological roots of many other complex diseases including type 2 diabetes and Alzheimer’s disease. This is the first sizable DNA study of ME/CFS, and any differences we find compared to control samples will serve as important biological clues. Specifically, we believe the results should help identify genes, biological molecules and types of cells that may play a part in causing ME/CFS.”

Patient and Public Involvement (PPI) has been central in the DecodeME partnership. Sonya Chowdhury our CEO chairs the PPI Steering Group and is also the co-investigator on the Management Group says:

“People with lived experience of M.E./CFS are at the very heart of the DecodeME project and our Patient and Participant Involvement (PPI) group has worked closely with researchers on all aspects of the study. Their profound involvement has been so transformational that we firmly believe it sets a new standard for health research in this country.”

People with M.E. over the age of 16 and based in the UK are invited to take part from home by signing up on the DecodeME website. Following an initial questionnaire, participants who meet the study’s criteria will be mailed a collection kit and asked to send back a saliva sample to be compared to the DNA of individuals in the control group.

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How has the M.E./CFS community played a part?

Patient and Public Involvement has been central to the development of the study. The study has also incorporated feedback and ideas from the wider community into the study design.

The group helped to rewrite the study questionnaire and had extensive involvement in the DecodeME questionnaire.

The DecodeME team have used the expertise of people with M.E./CFS to develop the marketing strategy and budget.

People with M.E./CFS, carers and M.E. charity members have been included every step of the way to ensure the study is designed with all severities and experiences in mind.