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 is Dr Luis Nacul (Co-Principal Investigator) at the London School of Hygiene & Tropical Medicine and a number of co-investigators from both universities and the Management Group.
The project team is supported by a number of 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 that 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, representative of the CureME Steering Group and 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, representative of the CMRC Patient Advisory Group
- Charles Shepherd, founding charity member of the CMRC and Honorary Medical Advisor of the ME Association
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 on behalf of the CureME Biobank Steering Group and as part of the PPI Steering Group;
- Dr Eliana Lacerda, Assistant Professor and Clinical Lead, CureME Biobank, London School of Hygiene & Tropical Medicine.
The Management Group is chaired by Sonya.
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The largest ever DNA study of ME/CFS
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