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Our first M.E. Genetics Research Summit begins today

September 14, 2022

Following the exciting launch of DecodeME on Monday - the world’s biggest genetic study into M.E./CFS we will be hosting our M.E. Genetics Research Summit today as part of Breakthrough-ME, alongside the MRC Human Genetics Unit at the University of Edinburgh.

The Summit will bring together researchers interested in M.E., people with M.E., carers, and potential funders to drive collaboration in this field with the hope of developing a 10-year programme of M.E./CFS genetics research.

Those who registered their interest in attending had the option to attend in person but also online.

Sonya Chowdhury, our CEO, will aim to live tweet as much as possible throughout the morning until lunchtime on our Twitter channel before the participatory workshops begin.

The workshop topics will include:

  • 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?

The morning presentations and the plenary session will be recorded and shared on our YouTube Channel as soon as they are available.

Programme for the day

10.00 - The Centre of Excellence vision, Prof Chris Ponting, Group Leader, MRC Human Genetics Unit, University of Edinburgh

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

10.30 - Marte Viken, Researcher, Oslo University Hospital

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

12.10 - Dr Kenny Baillie, Snr Clinical Research Fellow in Anaesthesia & Critical Care, University of Edinburgh

12.50 - 'Genetic Risk Factors for M.E./CFS Identified using Combinatorial Analysis', Steve Gardner, CEO, PrecisionLife Ltd

14.30 – Workshops

15.30 - Plenary - feedback from workshops: Sonya Chowdhury, CEO, Action for M.E.

We look forward to seeing those who registered for the event there. Note: registration for this event is now closed.