Petition update

Bios of MEGA team

M.E./CFS Epidemiology and Genomics Alliance (MEGA)
United Kingdom

Oct 19, 2016 — Action for M.E.: Represented by Sonya Chowdhury
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 M.E.
Action for M.E. has funded research for ten years including securing £500,000 funding from the Big Lottery Fund to establish the M.E. Observatory. The charity has a 45-people strong Patient and Carer Reference Group and has a VOICE Committee of lay members who input to the assessment process for research funding applications. Sonya’s contribution will be to support (adult) patient engagement in MEGA.

Association for Young people with ME: Represented by Mary- Jane Willows
The Association of Young People with ME celebrates in 20 Anniversary this year and to date has supported over 10,000 children and families in crisis. This work includes, helping children access a diagnosis and management of their condition, support in their right to an education that meets their needs, and advocating on their behalf when they are too unwell to speak for themselves. AYME’s vital work includes raising awareness of the condition of children with CFS/ME with the government and in the wider population.
The Association for Young people with ME believes that high quality research into CFS/ME is necessary to change the understanding and treatment of this difficult condition. Children and young people with CFS/ME want research, better treatments and a way forward. MEGA is the breakthrough that these children not only need but deserve. AYME will support the engagement of children and young people with ME in MEGA.

ME Association: Represented by Charles Shepherd www.meassociation.org.uk
The ME Association 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 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: Represented by Dr Neil Abbot http://www.meresearch.org.uk/
ME Research UK’s 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.

Applicants (in alphabetical order)
Professor Esther Crawley is a paediatric consultant and leads the largest paediatric CFS/ME 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 CMRC, she has developed collaborations with researchers from inside and outside the CFS/ME world.
Prof Crawley’s team conducts epidemiological studies and trials. They have described different phenotypes in children and adults, explored the causes of CFS/ME in children and continue to develop and investigate new treatments. Prof Crawley has a background in genetics and as CFS/ME 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 CFS/ME for many years.

Professor George Davey Smith is a clinical epidemiologist whose research has pioneered (1) understanding of the causes and alleviation of health inequalities; (2) lifecourse epidemiology (3) systematic reviewing of evidence of effectiveness of health care and health policy interventions (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 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 profile large areas of metabolic networks applying untargeted bioanalytical and mass spectrometry approaches to both small studies (n<100 samples) and large studies (n>500 samples); 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.

Professor Stephen Holgate is Medical Research Council Clinical Professor of Immunopharmacology and Honorary Consultant Physician within Medicine at the University of Southampton.
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 980 peer reviewed publications (H index 133), 60 Book editorships, 453 Book Chapters and Reviews, 48 Editorials, 76 Official and Government Reports. He holds an 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). Stephen is Chair of Main Panel A (Medicine, Health and Life Sciences) of the UK Research Excellence Framework 2014, Chairs 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), and from 2014, will join the Science and Innovation Strategy Board of the Natural Environment Research Council (NERC). He is Chair of the European Respiratory Society Scientific Committee, Treasurer of the World Allergy Organization and Member of the Medical Science Committee of Science Europe. In 2003 he cofounded of Synairgen a publically quoted respiratory drug development company with a particular focus on lung antiviral defense in asthma, COPD and severe viral infections.

Professor Maria Fitzgerald is a neuroscientist who leads a research group at UCL which is internationally recognised for pioneering work in the basic developmental neurobiology of pain. Prof Fitzgerald is a world leader in science of pain in infants and children and an expert in the fields of both acute and chronic pain mechanisms. She has many research interests including investigating the neurobiological processes which underlie the development of pain pathways which includes the development of 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.

Professor David Ford is Professor 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.

Professor James Horne is an (emeritus) Professor at Loughborough and an honorary Professor 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.

Professor Paul Little is Professor 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. Professor 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 CFS/ME because of a close family member.
Professor Julia Newton is Clinical Professor 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).
Professor 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. Professor 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.

Professor 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. Professor 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.

Professor Andrew Morris is Professor of Medicine, Director of the Usher Institute of Population Health Sciences and Informatics and Vice Principal of Data Science at the University of Edinburgh, having taken up position in August 2014. Prior to this Andrew was Dean of Medicine at the University of Dundee. He is seconded as Chief Scientist at the Scottish Government Health Directorate which supports and promotes high quality research aimed at improving the quality and cost-effectiveness of services offered by NHS Scotland and securing lasting improvements to the health of the people of Scotland. His research interests span informatics and chronic diseases. He has published over 300 articles. He is Director of the Farr Institute in Scotland funded by the MRC and nine other funders and Convenor of the UK Health Informatics Research Network, representing a £39M investment in health informatics research. Andrew is a Governor of the Health Foundation, a leading UK charity that supports quality improvement in health care. Andrew also chairs the Informatics Board at UCL Partners, London and is co-founder of Aridhia Informatics, a small Scottish based biomedical informatics company.

Professor Carmine Pariente. Professor of Biological Psychiatry at the Institute of Psychiatry, Psychology and Neuroscience, King’s College London, and Consultant Perinatal Psychiatrist at the South London and Maudsley NHS Trust.
Professor Pariante 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 experimental and cellular models.
He has received numerous awards for his research: for example, from the National Alliance for Research in Schizophrenia and Depression (NARSAD), the American Psychiatric Institute for Research and Education (APIRE), and the British Association for Psychopharmacology. He has recently been awarded 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. 2015 Anna-Monika Prize for Research on Depression, and the 2016 PNIRS Normal Cousins Award for Research in Psychoneuroimmunology.
His dream is that new therapeutic tools targeting the stress system will soon be available to alleviate the suffering of patients with mental health problems. He can be followed on Twitter @ParianteSPILab and on http://www.huffingtonpost.co.uk/carmine-pariante/.

Professor Caroline Relton is a professor 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.

Professor Colin Smith is Professor 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. Professor 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 CFS/ME. This will be undertaken by analyzing gene activity in blood cells, which offer a window on what is happening in the body as a whole.
Professor 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.


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