Esther Crawley - (what drives her) plus quotes

http://mentalhealthdaily.com/2015/05/13/delusions-of-persecution-causes-symptoms-treatment/

 

I just saw some stuff from NIHR promoting their Patient and Public involvement in research, and it reminded me of this annoying Crawley blog they posted earlier in the year, where she present herself as bravely producing useful research in the face of unreasonable opposition:

https://www.nihr.ac.uk/blogs/doing-what-is-right-in-a-controversial-field/5370

Also, here are some slides from a talk she gave at the NIHR (these are quite interesting - and present Sonya and Action for ME as on her side):

https://www.nihr.ac.uk/funding-and-support/documents/Day 1 - Career journey Ester Crawley.pdf

Crawley is also on an NIHR review board choosing which projects to fund. The projects were approved in the process she was connected to:

DRF-2016-09-021
Depression in paediatric chronic fatigue syndrome
(CFS/ME)
Fund
Conditional

https://www.nihr.ac.uk/funding-and-support/documents/Fellowships/NIHR DRF 2016 Public Minutes.pdf

DRF-2017-10-169

Developing an effective intervention for
younger children (5-11 years) with CFS/ME
Fund

https://www.nihr.ac.uk/funding-and-...s/NIHR-DRF-Fellowship-2017-Public-Minutes.pdf

Crawley has talked about how the NIHR 'saved' her. Oh great.

This is the NIHR page on patient and public involvement. I wonder if there's any way of getting them to engage in debate over the merits of Crawley's work?

https://www.nihr.ac.uk/about-us/how...e/patient-and-public-involvement-in-research/

 

Thought I'd also link to their announcement on FITNET-NHS, featuring Mary-Jane Willows and Stephen Holgate: https://www.nihr.ac.uk/news/testing-online-treatment-for-chronic-fatigue-syndrome-cfsme/4778

 

BBC news quote by the paediatrician Dr Esther Crawley from Voices from the Shadows website.






"The activists have their own strange beliefs about exercise. It has never harmed anyone with ME...."
quote taken from Countrygirls notes at Crawleys last talk.

 

I don't think it mentioned anything about recording the Lightning intervention sessions in any of the proposals, and what would be done regarding storage/usage of that information.

 

The idea of some PhD student having to listen to, and assess, all those loopy LP sessions is pretty funny. What must they have thought?!

 

What a surreal response that is from a scientist. Oh, I need a brain surgeon. No worries, there's a butcher's shop nearby and that does a lot with brains.

Good to see EC accepts responsibility though ... I was beginning to wonder.

 

They were probably completely indoctrinated by the end of it!

 

That's not correct. It means that a good number are missing less than two days of school a week, and a good number are missing more. If "days missing" is normally distributed, the numbers in these two groups (more vs. less than 2 days) will be more or less even.

 

We need copies of what this sessions entail and publish them ( any volunteers)??

 

And of course we know the most severe are not at school at all.

 

Change of direction for Esther Crawley?

CONTRACT Study - CONservative TReatment of Appendicitis in Children (feasibility): study protocol for a randomised controlled Trial

https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-018-2520-z

 

Let's hope so, but our gain would be another patient group's loss.

Do you think she'll get them to stand in a circle and shout 'Stop!' at their infected appendixes?

 

Was my first thought too!

 

I wonder what exactly is going on here. I have never previously come across the idea of doing a 'sort of' (or 'feasibility') study before, putatively, intending to do a proper study, other than the case of SMILE where it seems the sort of study turned out to be sort of the real study.

And I wonder what Dr Crawley, a paediatric rheumatologist, is doing as an author on a study of appendicitis? Is it that she is considered now to be an expert on sort of studies of this sort?

 

Sort of

 

'A detailed programme of embedded qualitative and quantitative research to optimise recruitment to the feasibility RCT. It will also inform the design and conduct of any future RCT of non-operative treatment versus appendicectomy in the treatment of acute uncomplicated appendicitis in children.'

This could mean absolutely anything, or nothing. It sounds like bullshit to me.

I have a strong suspicion that this is a sort of trial to sort of see if appendicitis treatment can be made cheaper. So it will attract lots of money that could otherwise be used for looking after ill people.

 

Well I suppose she is a sort of expert..........on what exactly seems to vary

expert on getting ethics approval, avoiding FOIs, dealing with troublesome parents...........coming up with names for trials.............making up definitions............the list is endless

 

Does anyone know how many psychologists are in the list of names of people involved?

 

2 are in psych departments, not counting Crawley, who's a stealth-psychobabbler.