Esther Crawley

Recording of EC being asked "or do you consider [ME] a psychiatric and psychological condition?" at APPGME 22 Jan 2007.

https://twitter.com/user/status/1471857569450930186

 

And this reply further down ...
https://twitter.com/user/status/1471880584146345987


Seems to me a very salient point, about the (almost certainly deliberate) conflation between definition versus classification as an excuse for the 2007 GDG excluding the WHO classification. But deliberate conflation, when it suits their agenda, seems to be one of the go-to dirty tricks of the BPS regime.

 

Was the WHO classifications coding mandatory for the UK back when the 2007 guideline was being developed?

 

Yes.

• In 2004 a WHO communication stated that if a country accepts the WHO Regulations concerning nomenclature (which the Uk does), then that country is obliged to accept the ICD classification.
• In NICE's own Communications Progress report of September 2002 Anne Toni Rodgers, then one of the Directors of NICE, states: "The ICD-10 classification has been used as a basis for the new Institute classification directed at the informed reader. ICD-10 is used within the acute sector of the NHS and classification codes are mandatory for use across England."
• A 2007 NICE Taxonomy did list (ME) CFS as a disease of the Central Nervous System

You can confidently remove the "almost", that is exactly what they're doing here, it's a smokescreen.


This is just a slice of a much larger scandal that I've been working on the past month. ( So know that you're not looking at a complete picture.)

But yeah, the NICE '07 Guideline Development Group did deliberately and knowingly not adopt the WHO classification of ME, because some of them "felt that to do so did not reflect the nature of the illness", and it "risked restricting research into the causes, mechanisms and future treatments of CFS/ME."

The first, an excuse, is bs as they had to follow coding, regardles of how they were "feeling", and the second (an actual reason) is mighty interesting given that e.g. the patients, GP's, nurse and dietician on the GDG would not have objected on such grounds, and Esther Crawley, who does not answer the question in the sound clip above because she knows full well it's inexcusable what she's trying to pull off,, received 2.3 million pounds in research grant awards between 2006 and 2016*, making her the second-best paid researcher after Peter White (3.5 million). (Together that comes to an amount of 5.8 million pounds between 2006 and 2016, which is more than than the other 10 people on the list combined, 4.37 million.)


*AfME's 2016 report on ME/CFS funding

 

These BPS psychiatrists' "science" is all about feelings isn't it! (Something else for them to conflate if they read this).

 

Technically correct, this is exactly what happened, just the other way around. Exactly as they were warned by people who actually understood this. Hence why there technically should not be a "feelings" exemption to this stuff, and yet here we are.

It's unfortunate that there is a "feelings" exemption to disease classification and coding, as there must be, otherwise this would have been very wrong. Which it was! Funny how it works, how rules, even laws, are just a bunch of words unless someone acts on them, and people tasked with enforcing do just that, and not, you know, not that.

 

I'm having a poor cognitive day, what do you mean with that it happened "the other way around"?
And who are "they" that were warned by people who understood what exactly?

(I'm sorry if this is obvious, I'm just not getting it through my brain in a way that makes sense.)

 

This is the of the matter

 

Yes, not as clear as could be. I meant that the alternative behavioral definition they pushed forward did not "reflect the nature of the illness" and "restricted research", as they claimed. Their definition really did what they asserted an accurate definition they rejected, based on feelings, would do. Using a proper definition that recognized the ICD classification in neurology would not have done that, while the miscategorization into mental illness absolutely did. So what they warned about happened, because it's what they made happen, but the other way around: they caused this, while claiming to prevent it.

The people who warned this were the patient representatives and charities and the few experts present for the 2007 NICE guidelines process who said just that. And in general. Including, since then, the NIH and the IOM, who phrased it as "impairing progress and causing harm". And us. Basically all of us. We've been telling the BPS ideologues all of this for decades, long before the 2007 NICE guidelines happened.

 

Thanks for the clarification @rvallee , and yes, indeed.

 

job ad
Consultant Senior Lecturer/Associate Professor in Respiratory Child Health
University of Bristol - Bristol Medical School

https://www.jobs.ac.uk/job/CSJ418/c...sociate-professor-in-respiratory-child-health

 

Respiratory health - would that include long COVID perhaps ?
History is playing on a loop again ...

 

That was my first thought. Whole new cohort of ppl to terrorise with GET.

 

Real professional scientists would recognise and acknowledge when they get it wrong, because first and foremost their top priority is supposed to be welfare of patients, not their own career progressions. I don't have a problem with people standing their corner when it is reasonable they might be right; science (as do so many things) relies very much on the healthy cut and thrust of robust debate, and not giving way at the first objection. But if the outcome of that makes it clear you are simply wrong and need to back off and rethink, then you have moral and professional duty to do so, else you become a ball and chain on the search for advances in patient care.

 

I wouldn't read too much into Crawley's connection to this post, a major part of the job is teaching and Bristol's Intercalated BSc in Child Health Research is specified for which Crawley is the course organiser. As a researcher the post holder will have their own priorities and while they may share Crawley's perspective there's no reason to suppose that will be the case.

 

it was more this line "You will have the opportunity to collaborate with world leading researchers in Child Health, Epidemiology and trials." that made me raise an eyebrow.

 

It does not specify in which direction the world is being led.

 

I think it might be fair comment as immediately it would include colleagues listed here: https://www.bristol.ac.uk/academic-child-health/staff-directory/ not to mention the 1000+ other academics associated with Bristol Uni's Medical School. Thankfully academia exists beyond the BPS Universe even if its adherents do get into senior management positions.

 

EC is top of that list; her profile is out of date as it still says she is the Deputy Chair of the CMRC.
as for the others on that list I am struggling to find a non-BPS one;
others we know well include Emma Anderson, (who I think was involved in FITNET-NHS), Maria Loades,
Dr Roxanne M Parslow,Senior Research Associate for FITNET - NHS
some others work with EC. Others have published with Amberley Brigden

a number of them on the list are in the
Health & Religious/Spiritual Beliefs and Behaviours dept

there are maybe a handful in what we would recognise as involved in biomedical research.

I am sure there are good non-BPS researchers, but not so sure there are that many in the
Centre for Academic Child Health.