MEGA research for M.E./CFS: White & Crawley listed as involved

Glycon

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Keep in mind that people sign public letters for all kinds of reasons that have nothing to do with the letter's actual agenda. (Friendship, institutional loyalty, currying and replaying of favors, wish to appear socially conscious and active, hunger for publicity, confusion about the letter's contents...)

Attempts to deduce anything about the motivations of individual signatories from the list of signatures are extremely tenuous at best.
 

TiredSam

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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.
 

Glycon

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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.
Maybe I wasn't clear. I don't mean to suggest that you cannot make plausible inferences about the signatories' motivations. I mean that you cannot make inferences about someone's motivations simply on the basis of the fact that they signed an open letter.

That wasn't any old public spirited public letter. It was unique; it defamed patients.
It doesn't actually say that the patients have anything to do with the alleged "campaign of harrassment". Some of the signatories may have said that elsewhere, but the letter itself does not specify.

By the way, there is nothing unique about it. There is a long history of animosity between the psychiatric establishment and patient advocates in the UK. The thing that makes this case different from the rest is just that ME/CFS is not properly in psychiatry's purview.
 

Yogi

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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?

You got it right.

What shall we give you - a Bob??

Which reminds me I have not seen him for a few weeks. Hope he's okay as he is usually a frequent visitor here? Hello @Bob ;)

Are you in Germany? If so you have already won the prize. After Brexit we have isolated ourselves from the rest of the Europe and may have quarantined the craziest of the UK psychiatrists from you!


You're right the 5 from MEGA have complained of harassment towards themselves and their colleague Weasely but in 4 years it had not stopped them from ME/CFS research.

Wessely had been complaining that harassment has put him off research since 2001 but he is still involved.

1. In fact as the funding report showed those who were most vocal about harassment Peter White and Esther Crawley obtained the most find and did most of the research.

http://forums.phoenixrising.me/inde...itutional-funders-over-the-past-decade.47096/

2. One would based on their claims find it would be negatively correlated. Allegations of harassment and research funding obtained and conducted in fact is strongly positively correlated.

3 Therefore statistically one can conclude that those alleging harassment were not put off ME CFS research.

4. Do the BPSers have thicker skin than other scientists??
None of the omics scientists will be scared off reasonable concerns being raised and we should not be intimated into not doing so!

5. This harassment and militant narrative serves a purpose - to silence and control criticism, however reasonable it may be, and of course the patients.


Quick Quiz 2: How many of these were involved in PACE trial?

BPS school/PACE/Fine/CMRC/Magenta/MEGA are just different shades of the same psychiatric ideology.

With MEGA marketed as it has been they will be able to and have as can be seen be able to sell it as more palatable to the patient community. I am surprised that some of our advocates have not been taking a stronger stance.

I will say something about this later on.
 
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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.
I agree with you; I think far more dangerous would be a backlash against this project which runs the risk of putting good researchers off the area. It's tough getting funding for research, especially big basic science projects like this (even more so now we've lost the E.U. funding stream) so to get the funding they will need to work hard and need maximum support to get it. Were I in there shoes (and I have been in the past!) and saw the response I would be seriously inclined to go to some other area where my efforts would be appreciated.
 
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The CMRC have pandered to White and Crawley from the outset - not for our benefit.

White and Crawley have not contributed to understanding ME at any point - but have only lead, and in the case of Crawley, continue to dominate, the construction of ME as vague fatigue.

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.

.
White and Crawley are surplus to requirements.



.
 
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The CMRC Charter:

https://www.actionforme.org.uk/uploads/pdfs/cmrc-charter.pdf

"3.1.3. All members must not take part in the harassment of researchers including taking part in orchestrated campaigns against those conducting peer-reviewed research. This does not prevent engagement in appropriate scientific debate."

~~~~~~~~~~~~~~~~




There is history in the CMRC - of the invitation by Professor Holgate to Professor Wessely to suggest researchers, and of damaging and manipulative interference in the internal affairs of the CMRC by the Science Media Centre, under the guise of 'Observers'.

https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf?dl=0
.


That is why the CMRC and its proposals are under such intensive scrutiny by the UK patient/activist population.
.
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Cheshire

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New Davey-Smith's paper. Could be of relevance here.

Collider Scope: How selection bias can induce spurious associations

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.
http://biorxiv.org/content/early/2016/10/07/079707
 

Yogi

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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 am deeply concerned at this MEGA project and that we are all being misadvised into supporting it.

I am very skeptical that a letter will achieve the result we are looking for given the past decades of history of patients views and letters being ignored and that it will be similarly not be responded to adequately.

Dr Charles Shepherd of the MEA advised us all on PR that a letter should be sent instead of a counter petition. I am sad that patients are spending time writing a letter which I really appreciate but feel we are all very sick and our patient representative charities should not have left us in this position and they themselves should be raising these issues instead as the issues were all foreseeable.

I asked @charles shepherd a reasonable and important question. The question was if a counter petition was such a bad idea why is the original CMRC petition a good idea given many were misled into signing and why can't the original petition not be terminated until the issues are resolved?

I assume @charles shepherd has missed my question which I specifically raised two times when you were on the forum. I will tag you again in case you had missed it.

I was hoping you could respond to it please.

Thanks very much. I look forward to your response.
 
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AndyPR

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#MEAction UK are using a poll on Facebook to judge patient opinion about MEGA

https://poll.fbapp.io/cmrc-mega-study-poll/obmxg5?from=user_link

I don't know for certain but I would think that non-Facebook users won't be able to access this, if somebody who doesn't have Facebook could let me know then I'll update this.

ETA: As @Hutan confirms below, you do need Facebook to access it.
 
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AndyPR

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More on MEGA - blog by mrspoonseeker (sorry, can't remember your PR name)

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.
https://spoonseeker.com/2016/10/19/more-on-mega/
 

Yogi

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http://forums.phoenixrising.me/inde...-listed-as-involved.47082/page-17#post-773642

I am very ill like many people here and would have hoped that this would not be necessary.

I have been deeply concerned and disturbed about the MEA and it encouraging others to support MEGA and sign the petition.

I asked 3 times on October 5th and October 10th the same question when @charles shepherd was on the forum but was ignored each and every time.

http://forums.phoenixrising.me/inde...-listed-as-involved.47082/page-16#post-771945

http://forums.phoenixrising.me/inde...-listed-as-involved.47082/page-13#post-771697


I asked the last time on 10 October and had given him another two weeks to respond but no response had been received by 13 October. He has said there should be reasonable and constructive criticism and communication. However the communication has been very poor.

Now he may feel that he does not and need not respond to me. That is the MEAs and his pregorative. However what I find odd to say the least is that the MEA's medical advisor has repeatedly come on to PR to strongly advise and steer us towards supporting MEGA and sign the petition but not question MEGA and advised very strongly not to set up a counter petition but instead send an impotent open letter in the hope that MEGA and CMRC will engage in communication with us.

I have bit my tongue but feel I must speak out especially that the MEA medical advisor had continued to misadvise regarding MEGA and not respond to reasonable questions but instead guide the community to support MEGA and sign the petition prematurely.

So @charles shepherd I would hope you could respond to my reasonable question of why the original petition is necessary and why it is a good idea given a counter petition is such a bad idea.

I am also concerned about some unfounded statements being made to ensure support MEGA.

I put this out again so everyone can judge for themselves.

I will not hold my breath!
 

Yogi

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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?