Crawley: How to deal with anti-science BRS2017

[TiredSam]

I rest my case.
I concur with my learned friend.
The jury unanimously agrees, and awards damages and all costs.
Case dismissed!

I hear that Crawley, Wessely, White and Sharpe are not appealing.

 

[Barry53]

I hear that Crawley, Wessely, White and Sharpe are not appealing.

Are you saying you did find them appealing!?

 

[Wolfiness]

TL;CR
Does EC extrapolate to ME or just "syndromes of chronic fatigue" ?

 

[NelliePledge]

I would like Crawley to attend the Invest in ME conference. She might learn what ME is and why her approach is so wrong.

be interesting to merge Invest in ME conference with the CMRC one and force all the psychs to attend

 

[NelliePledge]

Are you saying you did find them appealing!?

definitely unappealing

 

[NelliePledge]

I hear that Crawley, Wessely, White and Sharpe are not appealing.

Chalder and Moss Morris arent appealing either

 

[Snow Leopard]

Kittens are appealing.

 

[RogerBlack]

Psychologists

TL;CR
Does EC extrapolate to ME or just "syndromes of chronic fatigue" ?

She does not seem to differentiate strongly between "chronic fatigue" and CFS.
http://adc.bmj.com/content/early/2017/01/19/archdischild-2016-311198# - for example.

Which claims to be a CFS/ME study on its title, then pivots to:
'We identified adolescents who had disabling fatigue of >6 months duration without a known cause at ages 13, 16 and 18 years.' - which isn't quite the same thing at all.

 

[Daisymay]

The fact that she doesn't speaks volumes.

Does IiME send her an invite?

I don't think it wouldn't make a blind bit of difference if she did attend, remember Dr Clare Gerada spoke at an IiME conference and that didn't change her or her husband (ie Wessely) perspective.

These people know full well that their point if view is scientifically invalid as Yogi so rightly said in a previous comment.

And we need to remember this isn't about two points of view where you can discuss and debate the relative merits, the peer reviewed evidence clearly show ME is a serious multi system disease not a behavioural disorder (IOM report 2015 and subsequent papers), evidence which invalidates the behavioural view. There is no debate.

Crawley was at CMRC conferences hearing people like Lipkin talk, yet she still persists with her baseless, unethical point of view, subjecting children to inappropriate and potentially dangerous treatments.

 

[Barry53]

Psychologists


She does not seem to differentiate strongly between "chronic fatigue" and CFS.
http://adc.bmj.com/content/early/2017/01/19/archdischild-2016-311198# - for example.

Which claims to be a CFS/ME study on its title, then pivots to:
'We identified adolescents who had disabling fatigue of >6 months duration without a known cause at ages 13, 16 and 18 years.' - which isn't quite the same thing at all.

Goalpost on wheels, preempting the ball wherever it goes.

 

[Maggie21]

Crawley has made a grave error in judgement here - but at least her stupidity means she's saying to a wider public medical audience just how she feels about many thousands of patients and family member and scientists who’ve written to her to complain about some of her studies or methods.


She has a status as the UK CFS/ME Collaborative Deputy Chair and she has a responsibility to work on helf of all patients not just those who agree with her and this presentation shows me that I can have no faith in her and that she is the wrong person for the role she has.


She has essentially used her status and research to denigrate those who argue with her as anti-science vexatious militants and she has the audacity to attempt to school other doctors in how to evade requests for information using the most flimsy of excuses - showing her to be anti-open science.

p.s. the chap who tweeted these slides a doctor - I retweeted them, he blocked me (for retweeting nothing more I had no contact with him - thats the atmosphere Crawley is creating with this. I have a good mind to write a letter of complaint to the University of Bristol and the Collaborative - its an outrage


She must go from the Collaborative in my opinion, her position is untenable after this presentation.

I find it sad that scientists and the medical profession currently don't seem to see the irony or hypocrisy in demonstrating for respect for science whilst allowing this perpetual abuse to continue. How on earth are we meant to 'respect' this sort of treatment.

 

[Snowdrop]

Sounds like a promising title for a new computer game. Could be the first in a whole new series - The Mind Games series.

Or a Series of Unfortunate Mind Fucks

 

[Barry53]

I just came across this telling article by Margaret Williams from 2011, and though I know it must have been referenced in PR at the time, I thought it might be helpful to @Nephrofan if he is trying to understand what is, and has been, going on.

http://www.meactionuk.org.uk/The-Media-and-ME.htm

The first few paragraphs are below:-

The Media and ME

Margaret Williams 16th April 2011

Ever since the foundation of the UK Science Media Centre in 1999 – whose purpose is to ensure that the media deliver only headline science stories that accord with Government policies – the reporting of the biomedical science surrounding ME/CFS has been noticeable by its absence. Instead, there has been a wealth of spin promoting the benefits and success of CBT and GET for every disorder imaginable, including ME/CFS.

In plain terms, the Science Media Centre presents only a one-sided view of the available information about ME/CFS, and direct contact with editors and health editors of broadsheet newspapers has revealed their policy of limiting their reporting of ME/CFS to what they receive from the Science Media Centre.

The fanfare of unlimited praise for the PACE Trial results at the press conference held at the Science Media Centre on 17th February 2011 is a case in point, with the media failing to use its critical faculties and regurgitating only what it had been spoon-fed.

There are a staggering number of flaws in the PACE Trial article published in The Lancet (Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Peter D White et al. The Lancet, 18 February 2011 doi:10.1016/S0140-6736(11)60096-2), not one of which was mentioned in the press conference.

...

 

[Wolfiness]

Psychologists


She does not seem to differentiate strongly between "chronic fatigue" and CFS.
http://adc.bmj.com/content/early/2017/01/19/archdischild-2016-311198# - for example.

Which claims to be a CFS/ME study on its title, then pivots to:
'We identified adolescents who had disabling fatigue of >6 months duration without a known cause at ages 13, 16 and 18 years.' - which isn't quite the same thing at all.

So if her subject is ‘chronic disabling fatigue’ she should butt the f*ck out of ME. It's bait and switch. Like MEGA.

 

[Maggie21]

You're certainly being too kind to EC, but you may be making a fair point about BRS. Although whatever excuse they may have had, they now have a duty to learn more about Crawley and decide whether it's in the interests of their patients (or anyone on the planet) to give her such an uncritical platform.

All involved so far seem keen to avoid taking responsibility or switching their brains on. That's the kind interpretation - the other is that something deliberate is going on.

Indeed. Given that her oft used phrase is anti-science, you would hope that any self respecting scientists in the room would not take her somewhat offensive comments at face value without checking out their veracity, looking at both sides of the equation, digging deeper. Otherwise one can only assume to be a scientist today does not mean what it used to.

Unless of course, even that is a kind interpretation and you are right about the something else going on . . . .

 

[Wolfiness]

And we need to remember this isn't about two points of view where you can discuss and debate the relative merits, the peer reviewed evidence clearly show ME is a serious multi system disease not a behavioural disorder (IOM report 2015 and subsequent papers), evidence which invalidates the behavioural view. There is no debate.

Crawley was at CMRC conferences hearing people like Lipkin talk, yet she still persists with her baseless, unethical point of view, subjecting children to inappropriate and potentially dangerous treatments.

She thinks she can reverse the biology. “It's not a pill, but it might as well be a pill in terms of the changes to biology.” So there's no inconsistency in her world.

 

[Luther Blissett]

moved to http://forums.phoenixrising.me/inde...-on-forced-treatment-benefit-sanctions.51105/

 

[trishrhymes]

I suspect that Crawley likes to speak at conferences for medical specialisms where the attendees are busy doctors there to update their specialist knowledge in their own field unrelated to hers. Her audience, who are likely to know almost nothing about ME, take at face value what she says, and won't see any reason to spend time digging into the story behind her claims of anti-science harassment.

We are tending to assume that her audience are primarily scientists. I would suggest that her audience are probably primarily doctors, most of whom will never have done any research. They are trained to learn vast amounts of knowledge and apply this knowledge to treatment of patients. Yes, they should take a scientific approach to this, but they may never have actually carried out a research project or had to analyse and interpret data. They will read some scientific papers, but, I contend, are unlikely to have the time, inclination or training to dig below the surface of what is being presented to them by researchers.

The few doctors who go into academia also do PhD's where they supposedly learn research methods. I don't think most attendees at these conferences are researchers. The speakers are probably researchers, the audience mostly probably are not.

My point is that Crawley's message both about ME and about how to deal with harassment by avoiding sharing data, may simply come across as fairly irrelevant to a busy doctor's daily life. A momentary evocation of sympathy, and praise for her supposed courage, and a general negative impression of ME patients as difficult people to be avoided, and/or a vague feeling that there's some sort of unpleasant mass of oddballs out there who are anti-science.

Perhaps they actually rather enjoy her talks because they get a feeling of self-congratulation for being part of a profession that stands up to the demons of anti-science, a sort of solidarity with the brave doctor fighting the forces of darkness in order to help the suffering. I can see how easy it would be to be inspired...

I'm certain she wouldn't dare to present the same talk to the IiME conference or the International ME/CFS conferences. I wonder whether she'll do it at the CMRC conference. I hope, if she does, there will be people there to call her bluff.

 

[Forbin]

Many of us are so anti-science that we donate money to some of the leading scientists in the world, just to cover our tracks.

 

[AndyPR]

Many of us are so anti-science that we donate money to some of the leading scientists in the world, just to cover our tracks.

We're so devious aren't we? I hope this point makes it onto Esther's next version of her Powerpoint slides...