ME/CFS Genetics Research Symposium 2022


Action for ME and the University of Edinburgh Human Genetics Unit joined forces to run an ME Genetics Research Symposium on 14 September 2022 in Edinburgh ahead of the launch of the Decode ME study.

The symposium brought together researchers interested in ME, people with ME, carers and potential funders to drive collaboration in this field and develop a 10-year programme of ME/CFS genetics research.


Prof Chris Ponting

Chris Ponting: The Centre of Excellence vision

Marte Viken, Researcher, Oslo University Hospital: “An immunogenetic study of ME/CFS patients”

Steve Gardner, Precision Life: ‘Genetic Risk Factors for ME/CFS identified using Combinatorial Analysis’

Kenny Baillie, Snr Clinical Research Fellow in Anaesthesia & Critical Care, University of Edinburgh: Genetics of susceptibility to critical Covid-19

Prof Doug Kell

Douglas Kell, Research Chair in Systems Biology, University of Liverpool: Post-exertional malaise as a Chronic Ischaemia-Reperfusion injury in Long COVID and M.E./CFS resulting from fibrin amyloid micro clots

Sian Leary and Andy Devereux-Cooke, DecodeME PPI: The Power of Patient and Public Involvement (PPI)

Plenary session: Feedback from workshops:

    • What would a 10-year programme of ME/CFS genetics research and follow up studies look like? How can we drive it forward?
    • How can we forge collaborative links with researchers who are not currently active in ME/CFS research?
    • How do we ensure PPI is at the heart of future genetics research?


Comments on the symposium stories:

ME Research UK: Genetics Research Symposiumpart 1: Profs Ponting & Viken

ME Research UK: Genetics Research Symposium – Genetics Research Symposiumpart 2: Prof Ponting & Precision Life

Biospace: Genetic link identified for Chronic Fatigue Syndrome could advance treatment

ME/CFS Research review: New study links 14 genes to ME/CFS, by Simon McGrath, exploring the implications of the unpublished results of Precision Life’s study of ME/CFS DNA. The study identified 15 sub-groups which now needs to be replicated with larger studies on those with a clear ME diagnosis.

Cision: New Study Reveals First Genetic Links in ME and Chronic Fatigue Syndrome Paving the Way for New Diagnostics and Drugs

New Scientist: Genes may raise chronic fatigue risk

GenomeWeb: PrecisionLife’s Combinatorial Analytics Uncovers Chronic Fatigue Syndrome Susceptibility Genes

Research preprint: Genetic risk factors for ME/CFS identified using combinatorial analysis

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