People with ME/CFS are at the heart of the ME/CFS Biomedical Partnership and are involved in all aspects of the research.
The grant has been awarded to Prof Chris Ponting (Principal Investigator) at the University of Edinburgh and he is ultimately responsible for successfully delivering the project. Working alongside Chris are a number of co-investigators from both the university and the Management Group.
The project team is supported by numerous people with ME and carers who help with recruitment, communications and marketing.
Patient and Public Involvement (PPI) Steering Group
The Patient and Public Involvement (PPI) Steering Group is made up of people representing groups or networks from the ME/CFS community.
The Steering Group will work with the study’s Management Group to put public involvement at the heart of the research project, from start to finish, and ensure the National Standards for Public Involvement are met.
The Steering Group members are:
- Sonya Chowdhury chairs the PPI Steering Group and is also a co-investigator (PPI) on the Management Group. Sonya is the founding charity member of the UK CFS/ME Research Collaborative (CMRC) and CEO of Action for M.E.
- Andy Devereux-Cooke, co-founder of the Science for ME forum. Andy is also a co-investigator (PPI) on the Management Group.
- The Countess of Mar, on behalf of Forward M.E. and the ME/CFS patients and carers that Forward ME’s organisations represent.
- Jim Wilson, parent and carer, Associate Member of the CMRC, and former Convenor of the CMRC Patient Advisory Group.
- Emma Northwood on behalf of the ME Association.
Sian Leary, advocate with #MEAction UK, Sheffield ME & Fibromyalgia Group and the ME/CFS Priority Setting Partnership.
Claire Tripp, parent and carer involved with #MEAction UK.
The Management Group leads the project and comprises:
- Professor Chris Ponting, Chair of Medical Bioinformatics, University of Edinburgh and Section Head, MRC Human Genetics Unit, Principal Investigator
- Sonya Chowdhury, on behalf of Action for M.E. (founding charity member of the CFS/ME Research Collaborative) and the Collaborative, and as Patient and Public Involvement Steering Group Chair;
- Andy Devereux-Cooke as part of the PPI Steering Group.
The Management Group is chaired by Sonya.
Science Advisory Board (SAB)
The Science Advisory Board (SAB) for DecodeME is made up by researchers with a wealth of experience in researching genetics and ME/CFS.
The SAB will offer consultation to the DecodeME research team throughout the project to ensure DecodeME meets the highest scientific standards.
The SAB consists of:
- Prof Stephen Holgate, Chair of the SAB, Medical Research Council Clinical Professor of Immunopharmacology and Honorary Consultant Physician within Medicine at the University of Southampton
- Prof Martin Tobin, Professor of Genetic Epidemiology and Public Health at the University of Leicester.
- Prof Julia Newton, Medical Director at the North East & North Cumbria Academic Health Science Network, and Medical Adviser to Action for M.E.
- Prof Brian Hughes, Professor in Psychology at NUI Galway, member of the HSE (Ireland) Working Group on Myalgic Encephalomyelitis, and Scientific Advisor to Hope 4 ME & Fibro Northern Ireland.
- Prof Benedicte Alexandra Lie, Group Leader at Oslo University Hospital Genetics of Autoimmunity and Cancer research group.
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The largest ever DNA study of ME/CFS
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