Esther Crawley

Tom Feilden said:
The real cause was an, as yet, undiscovered virus, and anyone who demurred was involved in an elaborate conspiracy.
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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.
 
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There are still many illnesses in which the cause is unknown or disputed - and this usually acts as a spur to further research aimed at achieving a more complete understanding
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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.
CFS/ME is one of those illnesses plagued by violently to irrational prejudices about cause and cure
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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.
 
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.
 
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.
 
Barry said:
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?
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Snowdrop said:
ON the science media centre quote: this flyer would be from 2012 I think.
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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.
 
Sly Saint said:
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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?
 
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.
 
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:

MSEsperanza said:
Found this in my drafts folder and thought it didn't warrant an own thread so just leave it here. (From July, didn't check for updates)

I did some search on PROSPERO (International Prospective Register of Systematic Reviews)
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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:

2014


1) Esther Crawley, Julian Higgins, Alison Richards. Recovery in paediatric CFS/ME. PROSPERO 2014 CRD42014009303 Available from: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42014009303



Participants/population

Inclusion: Children age <19 with CFS/ME, or ME (myalgic encephalitis or myalgic encephalopathy) Defined using CDC criteria (Fukuda 1994, 2004) or NICE (2007) or Oxford criteria

Exclusion: Children who have fatigue due to other causes. Chronic fatigue that has not been defined using one of the above criteria.

Context

Only include studies with children diagnosed since 1994 as this is when CFS/ME was defined scientifically. Only include studies from Western Health Care systems so outcome can be interpreted in the context of the UK health care system.


2) Esther Crawley, Liam Sheppard, Amblerly Brigden, Peter Lillie, Charlotte Mason-Apps, Tom Norris, Julian Higgins. Systematic review for the treatment of CFS/ME via dietary manipulation/nutritional supplementation. PROSPERO 2014 CRD42014010756 Available from: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42014010756


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).

Context

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


3) Roxanne Potgieter, Esther Crawley, Alison Heawood, Kirstie Haywood, Jessica Broughton, Sarah Harris, Adla Alattas. Children’s experiences of living with CFS/ME: a systematic review and synthesis of qualitative studies. PROSPERO 2014 CRD42014009896 Available from: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42014009896


Participants/population

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).

Context

Only include studies with children diagnosed from date of first agreed definition of CFS/ME (Fukuda, 1994). The review will focus on the experiences of children with CFS/ME.

2015

4) Tom Wardill, Samantha Leong, Esther Crawley, Brian Walker. Systematic review of the relationship between cortisol levels and CFS in children. PROSPERO 2015 CRD42015029144 Available from: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42015029144


Participants/population

Children (discussed in search strategies).

Inclusion - children age <19/ CFS defined by Oxford or CDC or NICE criteria/ Cortisol levels measured in some way.

Exclusion - Fatigue due to other causes/ Chronic fatigue defined by other criteria



Context

(empty)



Risk of bias (quality) assessment

Not applicable.



5) Maria Loades, Esther Crawley. Systematic review of depression in paediatric CFS/ME. PROSPERO 2015 CRD42015016813 Available from: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42015016813


Participants/population

Inclusion criteria: Children age <18, with CFS/ME, or ME (myalgic encephalitis or myalgic encephalopathy), defined using CDC criteria (Fukuda 1994, 2004) or NICE (2007) or Oxford criteria, participants have completed a valid assessment for depression.

Exclusion criteria: Children who have fatigue due to other causes. Chronic fatigue that has not been defined using one of the above criteria.

Context

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.

2016

6) Basim Almutairi, Jade Thai, Esther Crawley, Christelle Van Antwerpen. Using MRI as a neuroimaging technique to investigate Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: a systematic review. PROSPERO 2016 CRD42016050569 Available from: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42016050569


Participants/population

Inclusions:

Children and adults with CFS/ME.

Studies which defined how they diagnosed CFS/ME and used one of the following inclusion criteria: Fukuda, Oxford, CDC, and NICE definitions

Exclusions:

Studies which did not meet the previous definitions.

Studies older than 1991 which is the date of the Oxford definition.

Studies which used other imaging modalities.


Context

Only include studies with patients diagnosed from date of first agreed definition of CFS/ME (Oxford, 1991). The review will focus on the contribution of MRI neuroimaging as a method used for better understanding of CFS/ME such as symptomology, diagnosis, aetiology as Biomarker or assessment of treatment/intervention.


Risk of bias (quality) assessment

[...]

In term of patients:

Study group which did not meet the inclusion criteria definitions of CFS/ME will not be included.
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Edited to fix some muddle. Apologies -- needed a couple of tries.
 
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Esther Crawley is in Bristol, United Kingdom. Dr. Crawley is rated as Elite doctor by MediFind in the treatment of Chronic Fatigue Syndrome. She is also highly rated in 5 other conditions, according to our data. Her top areas of expertise are Chronic Fatigue Syndrome, Mononucleosis, Fibromyalgia, and Appendicitis.
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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
 
Sly Saint said:
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
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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.
There are over 1 million research reports, presentations, and clinical trial results published every year in the medical community. Even a doctor isn’t on top of every advance in their field. Medical knowledge is advancing so rapidly today that even the experts can’t keep up with every new study, advance, or clinical trial. It is estimated that the world’s medical knowledge will double every 73 days.

Using cutting-edge machine learning techniques, we have trained our algorithms to sift through this mass of information and identify those findings that could help you learn about a new treatment or make a better-informed decision about which treatment option to choose.
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This seems to be a newish revamp of Bristols website:

Professor Esther Crawley:
Expertise
We conduct epidemiological studies (the study of populations) and treatment trials to improve the treatment of paediatric Chronic Fatigue. Our methodological research is designed to improve how paediatric research is conducted.
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Biography:
I am a community paediatrician at heart. I enjoy working with families in complex situations with different chronic illnesses which need to be well managed. My background was paediatric rheumatology, which is where I got interested in chronic pain and then moved to chronic fatigue.

My research background started with a lab based PhD in genetic epidemiology in London. Since then I have moved into conducting large treatment trials and different types of epidemiological studies. The research questions come from patients through my clinic which is based in Bath.
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https://www.bristol.ac.uk/people/person/Esther-Crawley-a95300a2-c840-4475-961b-db30939cfc55/

 
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