Esther Crawley

Er, no ... get it right Tom. It is their critics who argue that the cause and perpetuation is as yet unknown, and the BSP'ites who assert it is known to be deconditioning combined with unhelpful beliefs that prevent recovery behaviours. This is a classic case of perpetrators accusing their victims of the very behaviours they indulge in themselves. And Tom Feilden has fallen for it hook line and sinker.

And "undiscovered virus"? Where did that come from?

ETA: I had not realised this article was from 2012. See my additional post regarding this https://www.s4me.info/threads/esther-crawley-what-drives-her-plus-quotes.1139/page-7#post-281817.

 

That's a really weird statement. This is how things should be but, no, definitely not how they actually are. If anything disputed diseases constantly face the threat of nullification and receive no adequate resources. Diseases that are not disputed get far more resources and sympathy, while disputed ones in fact are always on the chopping block and dead last in priorities.

By the likes of Crawley. They literally are the source of all prejudices against us. WTF is wrong with these people?

Of course the meaning here is entirely on the basis that it spurs psychological research, since they are denial-based, but that literally makes achieving any understanding impossible.

These people are seriously weird and extremely bad at their job.

 

ON the science media centre quote: this flyer would be from 2012 I think.

 

Written but not posted earlier. Ran out of steam but I hope this makes sense.



Do we know when this rubbish was posted?

It's just the same old story- aggressive patients, harassed researchers- the latter disputed and dealt with by the 2016 Upper Tribunal. It's all they have.

But why would they post it now, if it was posted recently? To try to influence NICE; to intervene in the renewed interest in post viral illness following covid?



Aaah.......it seems to be one of a number of pieces posted to celebrate a decade of the SMC's work. The SMC was established in 2002 so this makes it posted in 2012
I assume.

Quote from the introduction before short articles on work of SMC, one of the items being Esther Crawley's story.


"Fiona Fox Chief Executive

Now we are ten. It seems to Fiona Fox, the Science Media Centre’s founding director, a long time since she sat in front of a daunting interview panel of eminent scientists including a Baroness, a Lord, and the editor
of Nature - and managed to persuade them that they should not allow her lack of a science background to blind them to her other talents.
She has, she says, many reasons to thank them for their confidence. She looks back on the past decade as the most stimulating, challenging and fulfilling of her working life. She is proud of the SMC’s achievements and to have played her part in changing the culture of science in such a way that the public and policy makers now hear more from scientists than at any other time.



Getting a hearing: a decade of achievement
this brochure recounts a handful of the kind of stories in which the SMC has been involved. The personal perspectives of the scientists, journalists
and press officers we have worked with reveal what has, more than anything else, defined the SMC: our belief that scientists should get more engaged proactively."

And Esther Crawley's is one of the stories she was proud of!!



@Snowdrop I think was also saying this about the timeline

edit: First para amended.

 

I don't know, Barry, that sure sounds a lot like work!

 

Can I ask why @Sly Saint posted yesterday - is there a media revisiting of this?
I expect some form of media intervention to try and control the narrative for both NICE ( as can also be seen by the flurry of published papers) and now long COVID which could expose the paucity of scientific rigour

I do suspect that though that

• given the high prevalence
• abiity to use internet to form support and campaigning groups for the start
• number of medical staff affected

that longCOVID will quickly be separated off to leave reputations intact.

 

I have to say I had missed the fact this was from 2012. There has been an awful lot of water under the bridge since then, some of which I was alluding to in my earlier post.

Maybe my comments towards Tom Fielden are misplaced at this current time; hopefully he realises now how very misguided his 2012 article was. It would be good though if he cared to set the record straight in 2020.

 

Thanks for that. I see Tom Feilden's twitter page, as one would expect, touches a lot on Covid 19. But not seen any references to long covid - has he discussed long covid at all, along with the potential overlap with ME/CFS? Would it be normal for a science editor to make no mention of it whatsoever at this point? Or is that an unfair question of mine? Is long covid still too far off of mainstream radar for that?

 

Has the SMC established their position on the subject?

 

I think profound silence can sometimes speak volumes.

 

because I only found it yesterday!
This is a thread of mostly historic articles and quotes relating to Esther Crawley.
Tom Feilden hasn't changed his tune at all.
https://me-pedia.org/wiki/Tom_Feilden

eta: I meant I only found it on Friday

 

Thanks - I wondered if there was a big media spoon being stirred...glad that it's not

 

It was one of a series of 10 articles posted in 2012 in a brochure to celebrate 10 years since the SMC was formed.

I tried to describe this in post #122 rather incoherently, I'm afraid. I am not sure I am any more coherent today so I will be quiet- but first say the first para from the quote by Fiona Fox is rather nauseating.

 

more historic archived stuff

https://meagenda.wordpress.com/category/dr-esther-crawley/

 

When I looked for review registrations with Crawley as main or co-applicant a while ago, I also noticed their insconsistent use of inclusion / diagnostic criteria:

Sytemetic Reviews with Esther Crawley as a co-applicant, registered at PROSPERO/
Inclusion critera for study participants: (Also from my drafts folder and not checked for accuracy.)

2014:

1) "Only include studies with children diagnosed since 1994 as this is when CFS/ME was defined scientifically";
neverless included Oxford Criteria (1991)

2) "We will only include studies with people diagnosed since 1994 as this is when the CDC defined CFS/ME defined scientifically."

But: Participants/population:
People with CFS/ME, or ME (myalgic encephalitis or myalgic encephalopathy) defined using CDC criteria (Fukuda 1994, 2004) or NICE (2007) or Oxford criteria (1991).

3) Context: Only include studies with children diagnosed from date of first agreed definition of CFS/ME (Fukuda, 1994).
And:
Inclusion: Children and young people (below 18 years of age) with CFS/ME (we will record the diagnostic criteria used and consider this in the risk of bias assessment).


2015:

This review will be limited to studies with young people (age <18 years) diagnosed since 1991 as this is when CFS/ME was scientifically defined.

A 2nd review from 2015 doesn‘t provide information under 'context', inclusion criteria are Oxford, Fukuda & NICE

2016:
nclusion criteria: Fukuda, Oxford, CDC, and NICE definitions
context: date of first agreed definition of CFS/ME (Oxford, 1991)

Quoted from these studies:

Edited to fix some muddle. Apologies -- needed a couple of tries.

 

found a few interesting posts on EC on Mumsnet.
Although some are quite old (eg 2009) it was the first time I'd seen that she indirectly 'charged' for her services (ie "Dr Crawley will see chn but does so in her own time for a donation to her research foundation.")
https://www.mumsnet.com/Talk/teenagers/683449-Anyone-else-with-a-teenage-girl-with-CFS

 

She is obliged to do it that way by academic rules. I had to do the same.

 

Similar Doctors
Maria Loades also rated as 'Elite'
Amberley Brigden 'Distinguished'
https://www.medifind.com/conditions/chronic-fatigue-syndrome/1135/doctors/esther-m-crawley/209858196

 

Seems to be based entirely on citations for her research and how her work is overhyped, using a machine learning algorithm that obviously cannot distinguish good research from bad research.

So essentially quantity and marketing matter, quality does not.

 

This seems to be a newish revamp of Bristols website:

Professor Esther Crawley:

Biography:

https://www.bristol.ac.uk/people/person/Esther-Crawley-a95300a2-c840-4475-961b-db30939cfc55/