The following are listed in alphabetical order, by surname.
Our Patient Advisory Group has 15 members, all of whom have direct experience of ME/CFS as a patient or a carer. You can read more about them on our Patient Advisory Group page.
Sonya Chowdhury, Action for M.E., representing the patient charity members of the UK CFS/ME Research Collaborative Board
Sonya is Chief Executive of Action for M.E. and represents the four patient charities involved in the UK CFS/ME Research Collaborative Executive Board on the MEGA team. Sonya has worked with Action for M.E. for just over four years and has direct experience of ME/CFS. Action for M.E. has funded research for ten years including securing £500,000 funding from the Big Lottery Fund to establish the ME Observatory. The charity has a 45-people strong Patient and Carer Reference Group and has a Voice Committee of lay members who input into the assessment process for research funding applications. Sonya’s contribution will be to support (adult) patient engagement in MEGA.
Sonya represents the three patient charities on the MEGA team. The other two are:
The ME Association (MEA), represented by Dr Charles Shepherd, the charity’s Medical Adviser. The MEA has been involved with all aspects of the illness – benefits, education, management, media, politics, research, services, support – for well over 30 years. Parliamentary work includes forming part of Secretariat for the All Party Parliamentary Group on ME at Westminster, membership of the Forward ME Group, membership of the Chief Medical Officer’s Working Group on ME/CFS and the Medical Research Council’s Expert Group on ME/CFS research, which is now the UK CFS/ME Research Collaborative. The MEA is part of the Department of Work and Pensions Fluctuating Conditions Group, who have made wide ranging recommendations regarding changes to the way eligibility for the Employment and Support Allowance is assessed. Research involvement includes supervising all the research that is funded by the MEA Ramsay Research Fund – in particular the establishment of an ME Biobank for blood samples at the Royal Free Hospital in London.
ME Research UK, whose primary aim is to commission and fund biomedical research into the causes and consequences of ME/CFS. This is an urgent challenge and, to date, the charity has invested £1.4 million in 40 specific biomedical projects, mainly in the UK but also in Australia, Canada, Belgium and Sweden. ME Research UK also acts as an information resource for patients, researchers and healthcare professionals, raising awareness of the need for biomedical research and encouraging researchers to get involved. It is therefore a member of the UK CFS/ME Research Collaborative, and the Countess of Mar’s Forward ME Group, and is part of the steering group of the UK ME/CFS Biobank which it helped to establish in collaboration with the other major charities.
Prof Esther Crawley, University of Bristol
Prof Esther Crawley is a paediatric consultant and leads the largest paediatric ME/CFS service in the world. She was chair of the British Association for CFS/ME (2007-10) and has strong links with NHS specialist services throughout the UK. As deputy chair of the UK CFS/ME Research Collaborative, she has developed collaborations with researchers from inside and outside the ME/CFS world. Prof Crawley’s team conducts epidemiological studies and trials. They have described different phenotypes in children and adults, explored the causes of ME/CFS in children and continue to develop and investigate new treatments. Prof Crawley has a background in genetics and as ME/CFS appears to be more heritable in children compared to adults, she has wanted to explore the genetics and understand more about the different types of ME/CFS for many years.
Prof George Davey-Smith, University of Bristol
Prof George Davey Smith is a clinical epidemiologist whose research has pioneered (1) understanding of the causes and alleviation of health inequalities; (2) life-course epidemiology; (3) systematic reviewing of evidence of effectiveness of health care and health policy interventions; and (4) population health contributions of the new genetics. He has published over 1000 peer-reviewed journal articles, 15 books/edited collections and numerous editorials, commentaries and reviews. He is an ISI highly cited scholar and Foreign Associate of the National Academy of Medicine and Fellow of the Royal Society of Edinburgh. He was co-editor of the International Journal of Epidemiology from 2000 to 2016, has sat on the MRC Public Health and Health Services Research and Physiological Medicine and Infection Boards, the MRC Military Health Research Advisory Group and the MRC Global Health Group and served on the Wellcome Trust Science Funding Interview Panel.
Prof Davey Smith has established or has been central to the running of a large number of epidemiological cohort studies involving detailed clinical and biomarker assessments. He is currently Scientific Director of the Avon Longitudinal Study of Parents and Children; and became Director of the MRC Centre for Causal Analyses in Translational Epidemiology in 2007 and of the MRC Integrative Epidemiology Unit in 2013. He is Director of the Wellcome Trust 4 year PhD programme in Lifecourse and Genetic Epidemiology at the School of Social and Community Medicine, University of Bristol.
Dr Rick Dunn, University of Birmingham
Dr Warwick (Rick) Dunn is a Senior Lecturer in Metabolomics, Director of Mass Spectrometry at Phenome Centre Birmingham and Co-Director of the Birmingham Metabolomics Training Centre. Dr Dunn’s research group focuses on developing innovative chromatography, mass spectrometry, sample collection and computational resources and their application in the study of the complex role of metabolites in human ageing and diseases. Areas of methodological and tool development include: methods to Prof ile large areas of metabolic networks applying untargeted bioanalytical and mass spectrometry approaches to both small (less than 100 samples) and large (more than 500 samples) studies; quality assurance procedures for large-scale untargeted metabolomics studies for which Dr Dunn led many of the early developments from 2007 onwards and new methods and software tools for metabolite annotation and identification in untargeted metabolic studies. Current and future developments have driven forward the group’s capabilities to apply untargeted and targeted metabolomics studies for dissecting the influence of metabolites on human ageing and diseases in a systems level approach where phenotype and metabolism are integrated.
Prof Maria Fitzgerald, University College London
Prof Maria Fitzgerald is a neuroscientist who leads a research group at UCL on the basic developmental neurobiology of pain. She is an expert in the science of both acute and chronic pain mechanisms. Her research interests include investigating the neurobiological processes which underlie the development of pain pathways, the central processes underlying hyperalgesia and allodynia, the structural and functional effects of acute and persistent pain and the development of supraspinal and cortical pain processing. Prof Fitzgerald is a Fellow of the Academy of Medical Sciences (2000), a Fellow of the Royal Society of Anaesthetists Faculty of Pain Medicine (2013) and a Fellow of the Royal Society (2016). She will lead the development of new pain measurement within MEGA as part of the phenotyping process.
Prof David Ford, Swansea University
Prof David Ford is Prof of Health Informatics at Swansea University Medical School, where he is Principal investigator and Director of the Administrative Data Research Centre Wales (ADRCW), an £8million investment into Wales by the ESRC as part of its Big Data initiative. He is also Deputy Director of Farr-CIPHER – one of the four UK Centre of Excellence for E-Health Research, funded by a consortium of top UK research funders led by the MRC, as part of the Farr Institute.
David is joint lead of the SAIL Databank, an internationally recognised data linkage resource that safely and securely share linked and carefully de-identified data from a wide variety of routinely collected data from across Wales, and which supports a wide range of researchers from across the UK and internationally.
David is the principal investigator and director of the Multiple Sclerosis Register, a UK facility to collect patient-donated data and link it to clinical and administrative data, in order to support research and better service planning. David is also Director of the eHealth Industries Innovation (ehi2) Centre, developing links between academia, the NHS, and business within the UK and internationally. He is also University Director of NHS Wales Informatics Research Laboratories, created through a collaboration between Swansea University and NHS Wales Informatics Service, the national programme for NHS IT for Wales. David is a Fellow of the Royal Society for the Encouragement of the Arts, Manufactures and Commerce (FRSA) and past Chairman and a current Director of MediWales, a membership organisation representing the medical technology sector of Wales. He is a member of numerous committees and national bodies relating to health informatics and health-related research. He has received research grants and consultancy contracts valuing over £45m over recent years.
Prof Stephen Holgate, University of Southampton
Prof Holgate is Medical Research Council Clinical Professor of Immunopharmacology at the Faculty of Medicine, Southampton. After completing his medical training in London he spent two years at Harvard Medical School to acquire skills in allergic disease mechanisms. On returning to Southampton in 1980, he set up a research group focused on the causative processes leading to asthma and allied diseases. He has utilised many approaches to study asthma including epidemiology, genetics, pathology, microbiology and immunology, pharmacology and experimental medicine. This research has informed guidelines on asthma management and has identified and validated novel therapeutic targets. Notable research contributions include the role of mast cells, their mediators and IgE as a trigger in asthma and allied disorders, the regulation and pharmacology of mast cells, placing inflammation at the core of asthma pathophysiology, uncovering the role of respiratory viruses, allergens and pollutants in asthma exacerbation, the discovery of defects in innate immune responses in asthmatic airways, mechanisms of airway wall remodelling and the discovery of novel asthma susceptibility genes.
His current research focuses on stratified medicine, the role of the epithelium in orchestrating asthma and the evolution of asthma across the life course. His work has resulted in over 1000 peer reviewed publications (H index 150), 65 Book editorships, 459 Book Chapters and Reviews, 48 Editorials, 105 Official and Government Reports. From 1987 to 2016 he has held a continuous MRC programme grant focused on the pathogenesis of asthma.
He is a Past President of the British Society of Allergy and Clinical Immunology and British Thoracic Society, was Chair of the MRC Population and Systems Medicine Board (PSMB) and then the MRC Translational Research Group. Stephen was also Chair of Main Panel A (Medicine, Health and Life Sciences) of the UK Research Excellence Framework 2014 and from 2014 -16 was a member of the Science and Innovation Strategy Board of the Natural Environment Research Council (NERC). For 3 years until 2016, he chaired the European Respiratory Society Science Council and the ERS Scientific Congress Programme Committee, was Treasurer of the World Allergy Organization, Member of the Medical Science Committee of Science Europe and is a Member of the Horizon 2020 Science Panel for Health (SPH). He now Chairs the Board of the UK National Centre for the Replacement, Refinement and Reduction of Animals in Research (NC3Rs), the British Lung Foundation Research Committee, the Hazardous Substances Advisory Committee (HSAC). In 2003, he cofounded Synairgen, a publically quoted respiratory drug development company with a particular focus on lung antiviral defence in asthma, COPD and severe viral infections and with new research into targeting lung fibrosis. He is a Trustee of Cancer Research UK, the Kennedy Trust and the British Lung Foundation, was founder member of the UK Academy of Medical Sciences and has established a new clinical and veterinary section of the Acadamie Europea.
Stephen has received a number of honours and awards including the King Faisal and Allyn J Taylor International Prizes for Medicine, the Paul Ehrlich Prize of the European Academy of Allergy Asthma (EAACI) and Clinical Immunology, the American Thoracic Society (ATS) Recognition Award for Scientific Accomplishments, the William Frankland award for Clinical Allergy and the British Thoracic Society Medal. He has been awarded honorary doctorate degrees from the universities of Ferrara Italy, Jallegonian Kracow Poland, Naples Frederico II Italy and Exeter UK. In 2011, he was appointed Commander of the British Empire in the Queen’s New Year Honours list for services to clinical science.
Prof Jim Horne, Loughborough
Prof James Horne is an (emeritus) Prof at Loughborough and an honorary Prof at Leicester University, where he is involved with various cross-disciplinary neuroscience initiatives.
Until recently, Prof Horne ran the Loughborough Sleep Research Centre (LSRC), well known nationally and internationally for its innovative work on sleep. For fifteen years he was the Editor of the Journal of Sleep Research (Wiley) – the main publication of the European Sleep Research Society.
Prof Paul Little, University of Southampton
Prof Paul Little is Prof of Primary Care Research at the University of Southampton, a Fellow of the Academy of Medical Sciences, Emeritus NIHR Senior Investigator, and currently Director of the NIHR Programme Grants for Applied Research Board. Prof Little has led the largest trials and cohort studies to date for the management of infections and their complications in primary care. He is currently PI of a prospective study in acute fatigue to better understand how fatigue presents in primary care, what factors predict chronicity, and to develop an intervention to help manage fatigue before it becomes chronic. Prof Little wants to improve the understanding of ME/CFS because of a close family member.
Prof Paul Moss, University of Birmingham
Prof Paul Moss is director of Research and Knowledge Transfer at the University of Birmingham and Chairman of the Infection and Immunity Board at the Medical Research Council. He served previously as Chair of the Cancer Research UK Clinical and Translational Research Committee. Prof Moss’s research is focussed around the application of translational immunological research in the study of human disease. His current research group includes clinical and non-clinical research scientists working on a range of different projects.
Prof Julia Newton, University of Newcastle
Prof Julia Newton is Clinical Prof of Ageing and Medicine at Newcastle University and Director of Newcastle Academic Health Partners (a partnership between Newcastle upon Tyne, Hospitals and Northumberland Tyne and Wear Foundation Trusts and Newcastle University). She is Director of the Newcastle Fatigue Research Centre in the Faculty of Medical Sciences at Newcastle, and has developed the first fatigue CRESTA clinic (winner of the NHS INnovations NE service improvement award 2015).
Prof Newton’s has a background in investigating and managing fatigue in chronic diseases, including liver disease, renal disease and chronic fatigue syndrome. Her published research has been chiefly on the autonomic nervous system and its relation to disease especially primary biliary cirrhosis. Prof Newton’s current interests, however, are focused on how fatigue develops, and she has a particular interest in “postural tachycardia syndrome” as a possible cause of chronic fatigue syndrome.
Prof Carmine Pariante, King’s College London
Prof Pariante is Professor of Biological Psychiatry at the Institute of Psychiatry, and Consultant Perinatal Psychiatrist in the associated South London and Maudsley NHS Trust. He investigates the role of stress in the pathogenesis of mental disorders and in the response to psychotropic drugs, both in clinical samples and experimental settings. His work focuses on depression and fatigue, with a particular interest in the perinatal period and in subjects with medical disorders. Moreover, he also uses animal and cellular models. Prof Pariante has received numerous awards for his research: for example, the 2012 Academic Psychiatrist of the Year Award from the Royal College of Psychiatrists, the 2015 Anna-Monika Prize for Research on Depression and the 2016 PNIRS Normal Cousins Award for Research in Psychoneuroimmunology. He also has an active public engagement profile and his work has been presented in interviews and documentaries on the BBC and other national radios and newspapers. He can be followed on Twitter @ParianteSPILab and on the Huffington Post.
Prof Chris Ponting, University of Edinburgh
Prof Chris Ponting is Chair of Medical Bioinformatics and a Principal Investigator at the MRC Human Genetics Unit, Institute of Genetics and Molecular Medicine. Chris started his research in particle physics before moving via biophysics to bioinformatics and genomics. Aside from one year at the National Centre for Biotechnology Information (NIH, Bethesda, MD), he pursued his research at the University of Oxford before moving to Edinburgh in 2016. His research group has made substantial contributions to protein science, evolutionary biology, genetics and genomics. Early in his career he discovered many important protein domain families. He then provided the first evolutionary analyses for mammalian genomes whilst leading protein analysis teams for the human and mouse genome sequencing projects. More recently, his research established that 8.2% of the human genome is constrained, and thus is likely functional.
Chris has been on Editorial Boards of Genome Research, Genome Biology, Human Molecular Genetics, Annual Review of Genomics and Human Genetics, and Trends in Genetics, and was a Senior Editor of eLife until 2015. He served as Program Committee member for the CSHL Biology of Genomes, American Society of Human Genetics and Genome Science conferences. He has been Head of the UK Node of ELIXIR since its inception, Chairs EMBL-EBI’s External Training Advisory Group and founded CGAT (www.cgat.org), an MRC-funded training centre. Prof Ponting is a Fellow of the Academy of Medical Sciences and a Member of the European Molecular Biology Organisation.
Prof Caroline Relton, University of Bristol
Prof Caroline Relton is a Prof of Epigenetic Epidemiology at the MRC Integrative Epidemiology Unit at the University of Bristol. She leads a large group of researchers who aim to improve our understanding of the determinants and consequences of epigenetic variation. Epigenetics refers to processes that regulate gene activity and are represented by chemical modifications to the genomic sequence. Prof Relton’s background in molecular epidemiology and research in the field of epigenetics offers the opportunity to identify novel biomarkers of disease and to establish whether these biomarkers are useful in prediction and prognosis.
Prof Colin Smith, University of Brighton
Prof Colin Smith is Prof of Functional Genomics at the University of Brighton. His research exploits the new ‘genomics’ technologies to understand complex biological processes. He originally trained as a microbiologist and has worked extensively on the production of antibiotics that are active against superbugs. Prof Smith has recently moved from the University of Surrey to establish the new Genomics Centre in Brighton. His genomics work now encompasses the study of human gene expression, particularly how our environment and diet influences the activity of our genes. He was involved in two major studies of how sleep deprivation and shift work/jet-lag exerts a major influence on the activities of our genes and begins to explain how sleep disruption impacts our health. He is also involved in a major study on the influence of vitamin D supplements on human gene activity. Although the results are not yet published the take home message is that we should all be taking vitamin D supplements – and ensuring that it is vitamin D3 (not D2)!
He hopes to bring his expertise in genomics to study, genome-wide, how human gene activity is affected by ME/CFS. This will be undertaken by analysing gene activity in blood cells, which offer a window on what is happening in the body as a whole.
Prof Smith is a strong advocate of ‘personal genomics’ and its potential for enhancing human well-being. He supports the public sharing of such data and had his own genome completely sequenced in 2013 and deposited with Personal Genome Project UK.