Discussion in 'Latest ME/CFS Research' started by AndyPR, Oct 19, 2016.
Did the four charities ask her to be their representative?
This is some recent information on AYME in case anyone is unaware:
They were the only charity in the UK, and indeed globally out of 30 ME charities, to ignore the express wishes of patients and go against patient interests by not calling for the PACE data to be released. Now that it has been released we have seen patients were absolutely right about it being in their interests to have that data become public. AYME refused to help uncover that scandal. They do not represent patients interests at all.
Many people have voiced other concerns about the things AYME does. Their involvement is wholly inappropriate.
It is worth noting that Esther Crawley is their advisor too. I have never seen one instance of AYME having a conflicting opinion to hers, so we have Esther Crawley and a so called patient representing charity that will side with her no matter what.
This MEGA study is looking more and more dodgy ever day.
Paul Little seems to approach ME/CFs from a BPS perspective as well. He's investigator in a study that wants to figure out what factors make fatigue chronic, and whether an internet based intervention can prevent it.
The good news, I just noticed how they only have 2300 signatures. Most of these were probably made by people that are unaware of who is involved or why that is problematic.
They can try and big up Crawley all they like, but she has a terrible reputation in ME circles and I wouldn't touch this study as long as she and her team are anywhere near it.
So here are the biomedical crew, or those with no obvious BPS role (AFAIK). It's not a bad-looking team
Professor George Davey Smith is a clinical epidemiologist
Dr Warwick (Rick) Dunn is a Senior Lecturer in Metabolomics
Professor Stephen Holgate is MRC Clinical Professor of Immunopharmacology
Professor Maria Fitzgerald is a neuroscientist
Professor David Ford is Professor of Health Informatics
Professor James Horne is an (emeritus) Professor at Loughborough ...involved with various cross-disciplinary neuroscience initiatives.
Professor Julia Newton
Professor Paul Moss ... researches the application of translational immunological research in the study of human disease.
Professor Andrew Morris is Professor of Medicine... (Big Data projects)
Professor Caroline Relton is a professor of Epigenetic Epidemiology
Professor Colin Smith is Professor of Functional Genomics
Professor Chris Ponting is Chair of Medical Bioinformatics
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 [note: hence his interest in subgroups], 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 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 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.
Not included here, but part of MEGA:
Professor Chris Ponting | The University of Edinburgh
Professor 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.
As expected the "Bios of the MEGA team" are very sanitised for the patient community/(cheerleaders).
A lot is missing from their biographies so I thought would add what they forgot to.
I would also add that both AFME and AYME supported the NICE CFS/ME CG53. Neither of them supported the judicial review in 2009 by two patients to remove CBT and GET and ensure proper tests are available on NHS.
Both AFME and AYME supported the PACE trial and continue to do so.!!!!!!!!!!!!!!!!!!
I have included the full article from AYME below as it is not included on PR and in case they take it down.
Esther Crawley was a Guideline Development Group member of NICE CG53 in 2007 which mandated CBT and GET as treatment for ME. I thought many people feel that NICE guidelines were damaging and harmful and are trying to get them revised. EC was a member of NICE GDG. She now claims doctors have to give CBT and GET because of NICE - but in fact she wrote them!
Esther Crawley is involved with MAGENTA, regards CFS/ME as tiredness, involved with SMILE and Lightening Process and Paediatric surveillance study. Esther Crawley complained to the GMC about Dr Speight to have his licensed removed.
Stephen Holgate's bio (Chair of CMRC) forgot to mention:
I repeat this MEGA study is toxic if the:
1.Criteria not resolved
2. Involvement of Esther Crawley/Peter White not removed.
3. Other charities outside the compromised AFME and AYME alliance are not involved.
It is very simple to ensure this study is beneficial for patients but they are refusing to improve it. This is a CON!
There are huge conflicts of interests here which have not been disclosed and they have been involved with each other closely to the detriment of ME patients for years.
As previously advised this MEGA is potentially X 20 as damaging as PACE if these issues not resolved.
I regularly use the AYME forum to keep in touch with other parents with children with ME/CFS and am surprised that there is no mention of MEGA anywhere on the site. So this is not being pushed to parents to show any support.
http://apps.charitycommission.gov.uk/Accounts/Ends59\0001082059_AC_20151231_E_C.pdf - is the 2015 accounts of AYME.
While it is understandable that not all money spent as part of a charities work can be directly attributed to that work, it is perhaps notable that out of the 200K incoming, 150K was spent on 'charitable activities', and 50K on raising funds.
Out of the 150K charitable activities, only 22K was actually spent on services to members.
This may be a highly misleading figure for a number of reasons.
It now looks like both the ME Association and ME Research UK are represented - at least there are bios for both listed on the MEGA site:
Invest in ME (IIME) who I am sure nearly all would agree are the most trusted UK charity by ME patients for research are not involved.
In fact they have called this MEGA out for what is.
The severe are represented by 25% ME Group and are also not involved with MEGA. Only they truly represent the severe patients. MEGA will exclude the severe and no clear non-politician answer has been given regarding the severe by MEGA.
AFME will represent the four patient charities including MEA and MERUK as has been clear throughout. Therefore MEA and MERUK will not be equally involved as one would have expected.
I have however supported MEA in the past but am increasingly concerned about their judgement and their unequivocal support and recommendation of MEGA despite the red flag warning signs.
THE CMRC is going to approach this the same way everything since 2007 or whenever they started organising broad church groups. We on here with ME don't trust AYME or Esther Crawley for patient selection and arguing for moving outside recruitment from fatigue clinics but maybe if the IOM report was used and we can still secure agreement to enrol a meaningful severe and entrenched cohort and that they delve deep so this reveals meaninful things about the clusters they find it will be ok as a worthwhile project but only if it is A uk project till 2022, not THE UK cfs/ME project until 2022.
I hope (but don't expect it to come from the charities) lobbying in UK will begin for a step up on funding and RFA commitment and attempt to incentivise research across areas, especially severe ME IMO) as Norway is doing so MEGA is just one strand in a uk effort across the years ahead. I personally will wait for final protocol (and this is taking long time already for a project, bare bones conceived in 2008) rather than obsessing on this I think.
Crawley looks set to stay and it isn't surprise, she is deputy of CMRC and AYME advisor, they won't throw her out will they.
Out of interest what are they saying about MAGENTA and FITNET on AYME?
I'm assuming as EC is the medical advisor she's being made out to be wonder woman particularly as she and her team have "explored the causes of CFS/ME in children and continue to develop and investigate new treatments."
To be honest there is very little up to date information on the official site. The last research news was 2015 Report "What matters to children with CFS/ME. A conceptual model as first stage in developing a PROM" This was another Dr Crawley report. There has been an article with her photo on the front page for a few months following a promotion but I notice this appears to have gone. Magenta and Fitnet are not mentioned- at least I can't find anything. There has been a little discussion by parents about Magenta as you can imagine but I don't know of anyone actually taking it up- certainly no one on the forum is admitting it. I know of a few that declined the option and did not feel pressured in any way to take it up.
Its a very gentle site with a bit of signposting to useful education/school information and a place for isolated souls (parents & kids) to chat.
I'm afraid this does not put my mind at rest. If you narrow this list down to those who actually have any experience of ME/CFS what you have is one person, Julia Newton. So we have one expert in ME/CFS who supports a view of ME/CFS as a biological disease. Although she has to be careful because in the UK that is a difficult position to hold in a research and clinical environment dominated by those aggressively promoting the psycho-social model. Contrast that to White and Crawley as the other two so called experts, who have the backing in the UK that Newton does now, who's every action is to promote the psycho-social model of ME/CFS - and history tells us that the charities involved with back them up too. Indeed, one of the two charities is advised by Crawley, which is obvious conflict of interest.
Except Newton, no one can expect those in the list above to know anything about ME/CFS at this stage, they are totally unable to challenge anything White and Crawley and the charities say. There is no balance to the "expert" ME/CFS opinion that is involved in the study.
Can't comment on any of this farce without a facebook account.
So first up I agree MEGA is lopsided in its choice of mecfs experts: it's very much the UK view which is out of step with the US, and quite a bit of Europe too, and I think that's a real issue.
On the other hand - apart from case definition, which needs to be nailed down - I'm not sure how much influence the likes of Esther Crawley will have on the omicists. Take a look at the blog by genomics Prof Chris Ponting: it's very clear he's trying to sort out the molecular biology. He, and others on MEGA are experts in their field and focused on the biology. I'm not sure he's looking for input from Crawley to help with a genomics study.
Maybe because of the way the BPS view has dominated a small UK field we miss out that there's a lot of high quality research going on in other areas where scientists freely and frequently disagree, and don't feel the need to adopt a particular viewpoint.
I truly hope you're right.
I guess it's that the attitude of 'meh - maybe it'll be better this time' is hard to take of a once-in-a-decade type funding opportunity (in the UK at least) of a study which will possibly heavily drive UK NHS and benefits policy for the next decade.
Some of us don't have that many more decades.
Yes, this study clearly has scientists which are not traditional BPS people on.
Ponting's plans look good and I'm sure there are other plans to do good stuff from others involved which I'm likely to support, but the question of who the disease experts are is pretty core, as is the case definition that selects participants. What if we fail to include enough genuine patients to find something worthwhile. No one will ever look again on this scale if they don't find something significant enough so getting patient selection wrong would be catastrophic.
And then there is the issue of patient representation - I think that is of particular concern as this study is going to involve 2000 children and it increases the influence of dodgy charities.
And then we have issues over 12000 patients (currently including many with mental illness rather than ME) providing info on mental health surveys which I'd bet will get analysed and published first. This will get done under the label of ME/CFS and these "findings" will be taken to apply to all of us. This will mean Crawley and other BPS people applying for loads more funding for psycho-social research and getting it off the back of this project. We'll never be rid of it if this goes ahead as is.
Problem is that the potential good elements of the study do not nullify the bad elements in the study. They simply co-exist. I am unconvinced the trade off is worth it.
You can also try a Google Site Search
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