The DecodeME team

The DecodeME grant was awarded to Professor Chris Ponting at the University of Edinburgh, who was ultimately responsible for successfully delivering the project. 

The DecodeME study has brought together a wide range of people – from our marketing and communications team, project managers, and geneticists, to other PPI members and researchers across the UK and beyond. While we highlight just a few names below, DecodeME’s success is thanks to the dedication and contributions of everyone involved.

Management Group 

• Professor Chris Ponting, Chair of Medical Bioinformatics, University of Edinburgh and Section Head, MRC Human Genetics Unit, Co-investigator
• Sonya Chowdhury, Co-investigator, on behalf of Action for ME (founding charity member of the ME Research Collaborative) and the Collaborative, DecodeME Management Group Chair and Patient and Public Involvement Steering Group Chair;
• Andy Devereux-Cooke, Co-investigator as part of the PPI Steering Group.

Patient and Public Involvement (PPI) Steering Group

The Patient and Public Involvement (PPI) Steering Group was made up of people representing groups or networks from the ME/CFS community.

The Steering Group worked 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 were met. Members of the Steering Group were embedded in every work stream of DecodeME. 

The Steering Group members were:

• Sonya Chowdhury, chaired the PPI Steering Group and was also a co-investigator (PPI) on the Management Group. Sonya is the CEO of Action for ME, and representative of the UK ME Research Collaborative (MERC)
• Andy Devereux-Cooke, co-founder of the Science for ME forum. Andy was also a co-investigator (PPI) on the Management Group.
• 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, Head of Advocacy and Communications for the World ME Alliance, and previously an advocate with #MEAction UK, Sheffield ME & Fibromyalgia Group and the ME/CFS Priority Setting Partnership.
• Claire Tripp, parent and carer, previously involved with #MEAction UK.

Science Advisory Board (SAB)

The Science Advisory Board (SAB) for DecodeME was made up by researchers with a wealth of experience in researching genetics and ME/CFS.

The SAB offered consultation to the DecodeME research team throughout the project to ensure DecodeME met the highest scientific standards.

The SAB consisted of:

• Professor Stephen Holgate, Chair of the SAB, Medical Research Council Clinical Professor of Immunopharmacology and Honorary Consultant Physician within Medicine at the University of Southampton
• Professor Martin Tobin, Professor of Genetic Epidemiology and Public Health at the University of Leicester
• Professor Julia Newton, Medical Director at the North East & North Cumbria Academic Health Science Network, and Medical Adviser to Action for ME
• Professor Brian Hughes, Professor in Psychology at University of Galway, member of the HSE (Ireland) Working Group on Myalgic Encephalomyelitis, and Scientific Advisor to Hope 4 ME & Fibro Northern Ireland
• Professor Benedicte Alexandra Lie, Group Leader at Oslo University Hospital Genetics of Autoimmunity and Cancer research group
• Professor Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at University College London
• Professor Danny Altmann, Professor of Immunology at Imperial College London
• Professor Jos Bosch, Associate Professor at the University of Amsterdam and Research Associate at Amsterdam UMC