Crawley: How to deal with anti-science BRS2017

user9876

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I suspect she's there because she's one of the world's foremost experts on how to obstruct FOI requests. That's a marketable kind of expertise, when all's said and done..
Has she actually had any FoI requests. I don't think I have heard of any, most were aimed at getting information about PACE because they had failed to publish the promised outcomes and we still don't know about some secondary outcomes. But Crawley was not involved with PACE.
 

Countrygirl

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Ye, but we all know you used to play tennis in a miniskirt and open toed fashion statement shoes. I'm not sure what that means but its definitely linked to ME.
I am totally innocent of that, I tell you! :jaw-drop:

However.......................I will tell you a little secret of mine as long as you don't tell anyone...........;)

One day........long, long ago.........dressed in my mini skirt.........(or bum frill as my mother called them)............and leather boots....................I with about a thousand students marched down Oxford's High bringing the city's traffic to a standstill ................waving placards........(I was marching...........unknowingly........... under the banner of the communist party with Prince someone or other from some exotic country alongside me)....................shouting 'Margaret Thatcher, milk snatcher'........... (no idea why..................she was threatening to arrange for the colleges to dole out our grants instead of direct payments at the time).....................until a little old lady jumped out and threw a bucket of water over me and my companions and called us a bunch of lazy layabouts. Much to my horror a BBC camera crew shot forward and filmed the whole sorry spectacle. It was on the six o'clock news that night. I just prayed my mother wasn't watching that evening. She said nothing so I probably got away with it.

Just don't tell Esther..................I dread to think what she would make of it. :angel:
 
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Esther12

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Has she actually had any FoI requests. I don't think I have heard of any, most were aimed at getting information about PACE because they had failed to publish the promised outcomes and we still don't know about some secondary outcomes. But Crawley was not involved with PACE.
There were definitely some about SMILE.

We'll only be aware of the publicly posted FOIs.
 

Snowdrop

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As my brain slowly digests all of this another thought occurs.

A real danger for EC are those in the scientific community who come to her aid without looking further at the 'debate' between her and ME sufferers.
Should they find out at some point that her version of this story is not quite validated -- those whose careers are not tied to PACE may choose to dissociate from her and will possibly be more vocal and more of a problem in the end then most of us pesky PwME.

Nobody likes being duped.
 

SilverbladeTE

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I am unclear what Esther Crawley was doing last a British Renal Society meeting.

She seems no to have noticed that the FOI request that did get through was found not to be vexatious, manifestly unjustified, inappropriate or whatever, but entirely reasonable. The information officer found the claims of anti-science to be unjustified. Moreover, the OMEGA petition seemed to get it right in that the application was turned down by the Wellcome. It was poorly thought through.
why? one word:
PROPAGANDA

and hey, Wellcome Trust, now one of the corrupt web of nepotism and venality eating away at the heart of Democracy, NHS, Science etc
 

Marco

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What I don't understand is: what is in it for these people (BPS followers) to relentlessly target ME/CFS patients? And, why are they allowed to continue to dictate and dominate in the NHS? Why would the establishment (seemingly) ignore the scandal of PACE and current biomedical progress? Am I missing something?
As far as the NHS is concerned they are the establishment.
 
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Have any of the listeners even contemplated for a moment -- to what end?
Why would so many sick people be going to such lengths to stop (supposedly) helpful science into their illness?
What is there to be gained?
Is the explanation here mass hysteria?
How is that justified?
Spot on @Snowdrop

I think what she has said that children & families need help now (whilst waiting for biomedical research to come to fruition).
The prob is that her 'help' is still marketed & perceived as a 'cure'.
I think I made this point on another thread but if she was actually honest & transparent about what her service could deliver/not deliver then this would be a huge step forward.
They may be able to help families understand pacing better, they may be able to support young people with CAHMS referrals (who have anxiety in addition to their M.E), they may be able to help families deal with a difficult school.
What they can't do is 'cure' M.E.
The young people who get better whilst in their service would have improved regardless (as long as they paced reasonably well & didn't do anything stupid).
There are many young people who don't improve whist under her service, or deteriorate, or leave the service yet we never hear about these.
I don't believe she is offering anything that a good GP couldn't - the trouble is that there are still too many GPs who are M.E doubters or don't want to support a 'difficult case' & that's what needs to be targeted.

She has the 'mantle of the expert' in paediatric M.E so she is left alone to get on with it. Parents & young people don't need specialist services. They need GPs in their community & schools that fully understand M.E; they need to feel empowered & not have to hand over responsibility to a service that has nothing to offer them other than writing letters for schools to ensure they provide appropriate education.
 
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What I don't understand is: what is in it for these people (BPS followers) to relentlessly target ME/CFS patients? And, why are they allowed to continue to dictate and dominate in the NHS? Why would the establishment (seemingly) ignore the scandal of PACE and current biomedical progress? Am I missing something?
Another factor is that it is very convenient for doctors given the responsibility of managing ME/CFS to be able to pretend that something is known about the disease and that there is a treatment. Especially when that treatment involves sending the patient off to a psychologist. And the psychologists like the work. Sadly, my old colleagues who deal with CFS and chronic pain are very happy indeed to endorse the BPS language. The main problem I think is that they are not that clear and so are threatened by the idea of having to think of something more intelligent and honest to say to patients.
 
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Feeling down after patient advocates accuse you of publishing low quality studies? Just accuse them of being anti-science! Problem solved!

Sadly, my old colleagues who deal with CFS and chronic pain are very happy indeed to endorse the BPS language.
BPS is a great philosophy.

The issue is that progress in medicine is about science, not philosophy. The sad fact is no high quality integrated BPS models have actually been developed for any illness yet. When they develop some high quality tested models, they can start championing BPS, until then however...
 
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Daisymay

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Another factor is that it is very convenient for doctors given the responsibility of managing ME/CFS to be able to pretend that something is known about the disease and that there is a treatment. Especially when that treatment involves sending the patient off to a psychologist. And the psychologists like the work. Sadly, my old colleagues who deal with CFS and chronic pain are very happy indeed to endorse the BPS language. The main problem I think is that they are not that clear and so are threatened by the idea of having to think of something more intelligent and honest to say to patients.
Well I'm sorry, but if that's how they think, it's totally inexcusable.Doctors aren't idiots, yet so many don't bother to think for themselves or care for their patients. Intellectual inertia and self interests seem to predominate.
 

NelliePledge

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I am unclear what Esther Crawley was doing last a British Renal Society meeting.

She seems no to have noticed that the FOI request that did get through was found not to be vexatious, manifestly unjustified, inappropriate or whatever, but entirely reasonable. The information officer found the claims of anti-science to be unjustified. Moreover, the OMEGA petition seemed to get it right in that the application was turned down by the Wellcome. It was poorly thought through.

I may be slow on the uptake but this is now clear evidence that Dr Crawley is delusional about the quality of her science and the nature of her critics. She did not mention that if you do bad science you may get Emeritus Professors of Medicine pointing out how bad it is, as well as patients.

Who on earth is this Sridharan fellow? Has anyone pointed out to him (or BRS) that a hundred scientists have written to the Lancet saying she and her friends are talking nonsense?[/QUOTE
I so wished she'd used this ;):
cos thats what shes talking out of
 
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Anti science? she's missing the whole point, these patiënts and their doctors are fighting for REAL science, not unproven ideas of hysterical psychoquacker(s)y, you're a shame for science! All the work of her and her delusional friends are an example of anti science.
Maybe she should tell the Renal specialists she can cure their patients with Lightning Therapy? (and be laughed out of the conference).
 

RogerBlack

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'vexatious' requests?
From https://www.whatdotheyknow.com/search/crawley "chronic fatigue syndrome"/all

https://www.whatdotheyknow.com/request/cfs_treatment_by_ester_crawley_a
Instead of responding to my genuine request for basic data about the CFS clinic. My request has been labelled vexatious, ironically maybe this is because I provided too much history about CFS, in order to substantiate the genuine nature of my request.
https://www.whatdotheyknow.com/request/number_of_children_re_diagnosed#incoming-770426
https://www.whatdotheyknow.com/request/health_and_safety_for_children_w#outgoing-602277
other keywords "esther crawley" vexatious
https://www.whatdotheyknow.com/request/cfs_flaws_in_fitnet_trial_ethics


The search https://www.whatdotheyknow.com/search/"Esther Crawley"/all Could also contain deeply upsetting results. I haven't properly researched this - ideally a proper search would include all requests to trials she's a PI of.
 

lilpink

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Intellectual inertia and self interests seem to predominate.
It's a sad indictment if doctors can't be relied upon to be 'intelligent' and 'honest'. I too had rather hoped (though admittedly experience has shown me otherwise) that those to whom we turn in times of disease should posses those two qualities at the very least. I'd also hope they would be cognizant of the existing, and up to date, body of evidence falling within the purview of their chosen discipline(s) .