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Crawley: How to deal with anti-science BRS2017

Cheshire

Senior Member
Messages
1,129
Tuller's response:
Trial By Error, Continued: My Libelous Blogging on Virology Blog

During a recent talk at the annual conference of the British Renal Society, pediatrician and staunch PACE proponent Esther Crawley accused me of libeling her. I wasn’t at her presentation, but her slides were captured and tweeted. Dr. Crawley’s lecture recounted her heroic struggle against the dark forces of anti-science—presumably, those pesky ME/CFS advocates who challenge her work. One slide included a mention of “libellous blogs,” along with a screen shot of one of my Virology Blog posts. Hm.
http://www.virology.ws/2017/05/03/trial-by-error-continued-my-libelous-blogging-on-virology-blog/
 

Yogi

Senior Member
Messages
1,132
What are our charities stance on this disgraceful behaviour?

I have still not heard anything from them. Especially those who support MEGA and Esther Crawley! are you @charles shepherd aware of this?

100% agree. Charities who are involved with EC need to call out her abuse and sever all links with her immediately.

This is the next step.

Hopefully these ME charities will immediately after the bank holiday make statements.

I will tag @charles shepherd here but hopefully the MEA have already prepared their statement.
 
Messages
25
Another great piece by David Tuller. We are so fortunate to have him and others fighting our corner.

Exactly @trishrhymes , we are lucky indeed. And as David Tuller so rightly says in his (yet again) excellent blog, we should also thank the Journal of Health Psychology for making these commentaries open to the public. A bold and refreshing step indeed in the quest to retain scientific integrity in the current toxic environment engendered by the calamitous PACE trial.
 
Messages
25
What are our charities stance on this disgraceful behaviour?

I have still not heard anything from them. Especially those who support MEGA and Esther Crawley! are you @charles shepherd aware of this?

Totally agree @Yogi . It's high time the ME charities (or at least certain ones of them) got off the fence and made it clear to patients whether they condone this sort of abuse or not. Or indeed, whether they agree with such vile comments from EC and her supporters/cronies.

And if they don't agree with her, if they also see this as unacceptable abuse, just exactly what are they going to do about it. Surely they can put their heads together and act as one to counter this highly offensive and damaging stance. They must know they would get 100% support from us if they did.
 

Yogi

Senior Member
Messages
1,132
This is a breach of copyright of Isabella Darden.

@Jo Best
I suggest that Isabella Darden (a student from Savannah, Georgia, US) sue Esther Crawley for copyright infringement & defamation. She has ripped off a photo from the web and equated her with being uneducated, criminality, drug abuse, and having relationship problems.

Aww poor girl. I feel so sorry for her being dragged into this.
http://www.yepitsprep.com/p/about.html

Esther Crawley is breaching so many GMC regulations I cannot keep count.

This is absolutely disgraceful and a complaint would be worthwhile to GMC in addition to whatever legal remedies Isabella Darden, David Tuller and Vincent Racaniello are considering.
 
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dangermouse

Senior Member
Messages
430
What are our charities stance on this disgraceful behaviour?

I have still not heard anything from them. Especially those who support MEGA and Esther Crawley! are you @charles shepherd aware of this?

I'm waiting to see a response too. I don't know how EC gained recognition as an expert on ME/CFS in the first place, let alone be a part of MEGA and/or other elevated positions. I'd have expected a genuine, knowledgeable, advocate who held their duty of care in high esteem.

This latest episode (for want of better words) is a step too far. It's now time for action to be taken. EC should not have any further involvement with progress (ME) because it seems she does not have our best interests at heart. I don't want anything from EC, my faith is in scientists (biomedical) who are determined to get to the cause of ME and subsequently treat it. I don't want quackery, mindfulness, fluff and GET; I want validation, respect and proper treatment.

Quite honestly I find all of this unbelievable. Some time ago I was a yuppie, now it seems I am something else! Only, I'm not.
 
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RogerBlack

Senior Member
Messages
902
If it wasn't for the BPS brigade pushing this ethos with 'so-called' scientific evidence then the politicians and the insurers would not have this particular loophole to add to their list of excuses to get out of paying.

I question this is true.
But not in a good way.
Recently in the UK, for new claims or changes of circumstance for universal credit or employment and support allowance, a key payment for those found to be incapable for work has been eliminated.

Historically, people found incapable for work (but that did not fall into the most severe category) have been paid an additional amount - around half again on top of the base amount a person normally gets while seeking work.
This has been eliminated, on the grounds that it is a 'perverse incentive' to be ill, and removing this will encourage people back to work, because work is good for you.

The claim (a lie) has also been made that they will use this funding to fund these people getting back into work.

The evidence on this is comedically worse than PACE. It's a study of fit people that find they feel better when they get into work. And it's quite old.
They are entirely ignoring what the regulations and evidence say, beyond a one or two sentence summary of the regulations aims.

(The regulations are aimed at splitting people into two groups, one which is 'likely to be able to find work with help in the near future' and the other which is 'too ill to return to work'. In fact if you actually look at them, it is quite possible to be found to be too ill to work, and for that condition not to be expected to get better, without meeting the criteria for the most severe group)
 
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MEMum

Senior Member
Messages
440
Yes, I find it very offensive. It's disgraceful. I honestly don't know how she is getting away with this.:thumbdown:

I suspect that her number of family adversity factors is from her "paper" in 2016 on CFS at age 16.
https://www.ncbi.nlm.nih.gov/pubmed/?term=crawley+pediatrics+chronic+fatigue+16

I think this is the study that rang parents to discuss "has your teen been tired recently?" and came up with 1.9% of 16 year olds having CFS.
This has been the topic of a previous PR thread.
 

slysaint

Senior Member
Messages
2,125
Paediatric CFS/ME Masterclass, Esther Crawley

ppt presentation from 2007 see also transcript..........
"Who gets it? How common is it? –1:100 children Which socio-economic class? –SE class 5 most common Which Ethnic Group? –Bangladesh Male:female ratio? –Children under 12: girls = boys"
"Pain –Explanation Phantom limb pain/pain pathway, Functional imaging, Useful versus non useful –Strategies: Distraction; Baseline – re-educating brain; Switching off brain –Drugs: Amitriptyline"

http://slideplayer.com/slide/4234450/

eta: and from her interview in 2012 "Esther - Well, it can affect everybody. It tends to be more common in women. In fact, it tends to be more common in those of lower socio-economic class, so more deprived families. And there's reasonable evidence now that it's also, certainly in this country, it's more common in ethnic minorities."
 
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slysaint

Senior Member
Messages
2,125
Old news (FITNET) but more of the same............

"However, a group of activists have raised questions over using psychological treatment for a biological disease."
http://www.scotsman.com/news/new-chronic-fatigue-syndrome-treatment-trialled-1-4273699

And if you were ever in doubt about AfME:

"Sonya Chowdhury, chief executive of Action for ME added: ‘This important study, analysing data from parent- and child-completed questionnaires, highlights the increased prevalence of ME among 16-year olds, pointing with even greater urgency to the need for effective treatments."

http://www.bristol.ac.uk/news/2016/january/chronic-fatigue-syndrome.html
 
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