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Nothing at all tenuous in deducing that Stephen Holgate, Paul Little, and George Davey-Smith, far from being in danger of being scared off, are fully aware of the politics of ME because they were signing letters with their pals Wessely and Crawley four years ago, and were either misled or bought into the militant patient narrative.Attempts to deduce anything about the motivations of individual signatories from the list of signatures are extremely tenuous at best.
Nothing at all tenuous in deducing that Stephen Holgate, Paul Little, and George Davey-Smith, far from being in danger of being scared off, are fully aware of the politics of ME because they were signing letters with their pals Wessely and Crawley four years ago, and were either misled or bought into the militant patient narrative.
That wasn't any old public spirited public letter. It was unique; it defamed patients.
Heard that somewhere before. Only in the context of objections to the BPS brigade though, happily. Did I mention that somewhere today?
Dr Zaher Nahle's No Spin Zone slides
In answer to your question, I make it 5:
Professor Peter White
Dr Esther Crawley
Professor Stephen Holgate
Professor Paul Little
Professor George Davey-Smith
Funny how none of them got scared off in the following 4 years, even though they must have been aware of what they're up against militant patient-wise for all that time (Although maybe fear did finally get the better of Peter White and that's why he resigned?). It's obviously their less courageous colleages they're worried about.
So who are the potential scaredy-cats? Of the people listed on the petition, if we remove those mentioned above because they are obviously battle-hardened and have a skin thick enough to ignore anything coming from patients (and I think we can remove Sonya Chowdhury for the same reason), we are left with:
Prof Chris Ponting, University of Edinburgh;
Prof Colin Smith, University of Brighton;
Prof Caroline Relton, University of Bristol;
Tony Bartlett, Somalogic;
Dr Rick Dunn, University of Birmingham;
Prof Julia Newton, University of Newcastle;
Prof Andrew Morris, University of Edinburgh;
Prof David Ford, SwanseaUniversity;
Prof Paul Moss, University of Birmingham;
Prof Jim Horne, LoughboroughUniversity;
Prof Maria Fitzgerald, UniversityCollegeLondon;
So which of these are we not allowed to mention the war to?
I disagree with you guys. I don't think the inclusion of these two researchers necessarily means that the entire project is a waste. There are too many people on the project for them to easily push a psychological explanation. I think this is a positive project and we could get a lot out of it.
.White and Crawley have themselves consumed obscene amounts of research funds over the decades, which have not at any point contributed to the understanding of ME, or to potential treatment.
Large-scale cross-sectional and cohort studies have transformed our understanding of the genetic and environmental determinants of health outcomes. However, the representativeness of these samples may be limited - either through selection into studies, or by attrition from studies over time. Here we explore the potential impact of this selection bias on results obtained from these studies. While it is acknowledged that selection bias will have a strong effect on representativeness and prevalence estimates, it is often assumed that it should not have a strong impact on estimates of associations. We argue that because selection can induce collider bias (which occurs when two variables independently influence a third variable, and that variable is conditioned upon), selection can lead to biased estimates of associations. In particular, selection related to phenotypes can bias associations with genetic variants associated with those phenotypes. In simulations, we show that even modest influences on selection into or attrition from a study can generate biased and potentially misleading estimates of both phenotypic and genotypic associations. Our results highlight the value of representative birth cohorts. Having DNA available on most participants at birth at least offers the possibility of investigating the extent to which polygenic scores predict subsequent participation, which in turn would enable sensitivity analyses of the extent to which bias might distort estimates.
Hi Dr Shepherd
Thanks for your communication. Sorry to hear about the abusive emails that you are getting. That is unacceptable.
Hopefully we should be able to have a robust constructive discussion on PR.
You said regarding counter petition that it is not a good idea. I think all options should remain on the table if communication from the CMRC is not immediately improved and if communication doesn't achieve anything.
Clearly the original petition is a very bad idea given all the issues described in the MEGA threads!
Can that original petition be removed until these issues are all clarified as it is quite deceptive to gather support for MEGA in its current state?
As has been said we are grateful for you coming on to here to explain things but surely as the patient representative that is AFME's duty which they are neglecting to fulfill?
@charles shepherd I appreciate you are very busy and may have missed this but I was wondering if you could respond to the question regarding the original petition? Thanks
I don't know for certain but I would think that non-Facebook users won't be able to access this,
Following on from their original email and Professor Holgate’s response, Leeds ME Network have sent a further email to Prof Holgate of CMRC about concerns regarding the proposed MEGA project:
Many thanks for your swift response to my previous email regarding the MEGA study and for passing our concerns on to those who are preparing the bid for funding…
It is heartening to hear from your email that the inclusion of very severe patients is under discussion by the MEGA team. I notice, however, that you mention ‘financial limitations’ in this context. The reaction of other patients with whom I have shared this issue echoes my own: that severely affected patients should be the priority. People with ME/CFS in general are offered little in the way of treatment but most of the severely affected are abandoned entirely by doctors. They are left to lie in darkened rooms, often unable even to sit up in bed or converse with their loved ones, and without any prospect of medical intervention. I’m sure you know all this. Though I cannot claim to have taken a scientific sample of opinion, the overwhelming impression I get from patients is that if there are financial constraints regarding MEGA then these should apply to the overall number of samples taken rather than be focussed on the severely affected, who are the ones most in need of help. I am reminded of Prof Ron Davis’ observation that data from severely affected patients is the most important ‘because their biology would show the greatest differences compared with healthy controls’. It seems incongruous to be envisaging such an enormous study yet even at this stage, while the grant submission is still being prepared, to be talking about insufficient money for full inclusion in the study of those most in need of help.
Very appropriate and timely comment.
Quiz:. How many of these diversionary tactics do you recognise from your experience of ME politics with the UK medical establishment?
https://en.m.wikipedia.org/wiki/Category:Diversionary_tactics
Another honourable charity looking after its patients interests!!
Who's interest are the MEGA supporting charities serving?