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Recording of Esther Crawley inaugural lecture on February 24

Dolphin

Senior Member
Messages
17,567
Somebody sent me this and said I could post it where I wanted:
https://www.dropbox.com/s/lc9kmqbxcsuiilg/Esther Crawley inaguaral compressed.mp3?dl=0


Here are some informal notes that somebody made:

[A few quotes pulled out - very partial, and may be a bit rough]
Lots of Wessely-style attempts to emphasise how terrible things were for those with CFS before she started trying to help (strangely no mention of her role in NICE).

Talks about motivations for research - sounds like it's all about trying to get money for services, which is how her papers read.

13:20 - George Davey Smith and Peter White helped her start getting grants for her work.

26:30 - starts talking about treatment. [roughly]"I've reviewed the world's literature and I can tell you that if children get specialist medical care then 2/3 will recover at six months, and this compares to less than 10% for those who don't get specialist treatment"
"Using ALSAC, which is less severe kids, not the ones that I see in my clinic, after three years still about 25% have not recovered. And not recovered means missing out on life, there's not many illnesses that do that."

27:30 - "And the issue for me, and the thing that I've struggled with over the last few years, is the lack of service provision."

29:10 - Talks about her three trials. SMILE trial "a lot of children and families asked us to do this trial" - so it was there fault money was invested in quackery?

32:20 - Starts talking about opposition. "These people have never talked to me. They've never asked what we're doing. They don't look at the data we've publicised about what children think about graded exercise therapy [...?] that protocol's on-line."

33:00 - "So the abuse for me first started with the SMILE Trial, so this is looking at the Lightning Process, and children and parents coming into clinic telling us a lot that it worked, so that it didn't, or a lot that it didn't, and we didn't know whether it worked or it didn't but I thought we should find out. I got so much abuse we went public about it in the end and I just love this quote... [laughter]. And you know, the problem is that if you do this kind of stuff then people leave, researchers leave, even researchers looking at viruses, they all just leave. This is the things that really annoyed me actually, I was accused of using children as guinea pigs. I actually got hte Church Times to run an apology, heh. But this is in the Church Times. Reported to the NSPCC. Reported to the GMC. I'm always being reported to the GMC, it's kind of standard now. In fact I'm in a six months window when I'm not currently reported to the GMC. Ahh... this is good. What's funny about this is the e-mail said 'I'm going to cut your balls off' - sorry. 'Prepare to meet your maker.' Okay. Undeterred, I decided... [more about GETSET].

37:00 - Some vague talk about on-line stalking.

43:00 - Gets given flowers from AYME on behalf of every single child she's treated in clinic and done research for.
 
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Dolphin

Senior Member
Messages
17,567
http://www.bristol.ac.uk/ccah/seminars/2017/esthers-inaugural.html

Professor Esther Crawley, Inaugural Lecture
24 February 2017, 6.30 PM - 24 February 2017, 8.00 PM


Priory Road Lecture Theatre, Priory Road, BS8 1TZ



Fatigue and ME: A story of research in a controversial area.
esther-crawley---inaugural-pho.jpg
Chronic Fatigue Syndrome or ME is one of the most disabling illnesses in childhood but we know very little about it or how to treat it. This is a story about a controversial illness, the children who inspire research, progress so far and what the future holds.

Biography
Esther Crawley, is a Professor of Child Health at the University of Bristol, a Consultant Paediatrician and an NIHR Senior Research Fellow. She is the clinical lead for the Bath specialist CFS/ME service for children based at the Royal United Hospital in Bath. This service provides assessment and treatment for over 450 children and young people each year. Esther leads a research team which investigates the epidemiology and treatment of CFS/ME in children and adults. The epidemiological work uses the Avon and Longitudinal Study of Parents and Children (ALSPAC) and a large cohort of patients (~18,000 adults, and 2500 children) to study the causes and different types of CFS/ME. Her team have developed expertise in delivering complex hard-to-do trials. They have just started recruiting to FITNET-NHS which will be the largest RCT in CFS/ME. FITNET-NHS will test the effectiveness and cost-effectiveness of internet delivered CBT throughout the UK. She is also running a large trial investigating Graded Exercise Therapy for children with CFS/ME. Esther trained in Oxford, did her PhD in London and lives in Bristol when she is not sailing or skiing with her teenagers.

Please note that the Priory Road Lecture Theatre is in the Priory Road Complex on the corner of Woodland Road and Priory Road. The lecture theatre can be accessed via Woodland Road – main entrance doors next to 8 Woodland Road and an entrance offering level access to front of the lecture theatre. The lecture theatre can also be accessed from the main foyer/café of the Priory Road Complex (12 Priory Road) by proceeding to the right past PC lab 1D5

Contact information
Free to attend, but booking will be required by RSVP to Julia Andrews, email: Julia.Andrews@bristol.ac.uk, tel: 0117 33 14005.

If you have not pre-booked your seat with Julia Andrews, but turn up on the night, you will be required to provide ID before being allowed into the lecture. It is advisable to pre-book with Julia if possible.

If you require additional support at any of these events, eg wheelchair access or sign language interpretation, please contact Carol Davies or Jan Hill at the earliest opportunity and we will endeavour to meet your requirements.
 
George Davey Smith and Peter White helped her start getting grants for her work.
Obviously explains why she is embedded in MEGA then, and if George Davey Smith has such bad judgement in helping her career then that's moved me even further away from supporting MEGA.

I'm afraid I haven't the stomach to listen to this but thanks for posting it.
 
Messages
3,263
Obviously explains why she is embedded in MEGA then, and if George Davey Smith has such bad judgement in helping her career then that's moved me even further away from supporting MEGA.

I'm afraid I haven't the stomach to listen to this but thanks for posting it.
Nor me. So yea, thanks for enduring that on our behalf (whoever you are!).

Yea, this is an interesting point. It may or may not be true, but either way, its a good reminder that MEGA was probably gonna be psychobabble dressed up in biomedical clothing.
 

user9876

Senior Member
Messages
4,556
"I've reviewed the world's literature and I can tell you that if children get specialist medical care then 2/3 will recover at six months, and this compares to less than 10% for those who don't get specialist treatment"

I would be surprised if there was a sufficient body of work in the world literature that would allow that claim to be made. It would be interesting to see what solid studies she quotes - because I cannot think of any. The claim is around treatments not just recovery rates so she needs to show children getting treatment are much more likely to recover than those who don't.

"Using ALSAC, which is less severe kids, not the ones that I see in my clinic, after three years still about 25% have not recovered. And not recovered means missing out on life, there's not many illnesses that do that."
This would already seem to undermine her claims about specialist medical treatment. But then if you fail to define what specialist medical treatment is then the claim itself is ill-defined hence dodgy as perhaps it could be fitted to any data (e.g. all patients ing the ALSAC had a GP!).

32:20 - Starts talking about opposition

When a researcher uses roughly 1/4 of their time to talk about opposition that suggests they don't have much to say.

29:10 - Talks about her three trials. SMILE trial "a lot of children and families asked us to do this trial" - so it was there fault money was invested in quackery?

If patients asked then perhaps she should actually publish the trial results. As far as I can tell the results are late in being published.

"These people have never talked to me. They've never asked what we're doing. They don't look at the data we've publicised about what children think about graded exercise therapy [...?] that protocol's on-line."

Much of the opposition to Crawley comes because people have read the data that she has published and in detail along with the protocols that are on line. The protocols are poor because they only use subjective mechanisms to measure interventions that aim to change children's perception of symptoms. Perhaps if she listened to patients she might end up with a better protocol - although it may not get the desired results.

It is hard to know exactly what children think of GET and how their views are coloured by promises that it will make them better. But Crawely has chosen to ignore patient surveys that constantly report harm from GET and doesn't give that information to patients when seeking consent for treatment or trials. It sounds like a statement of listen to those who agree but not those who don't statement from Crawley.

33:00 - "So the abuse for me first started with the SMILE Trial, so this is looking at the Lightning Process, and children and parents coming into clinic telling us a lot that it worked, so that it didn't, or a lot that it didn't, and we didn't know whether it worked or it didn't but I thought we should find out.
We still don't know if it works because she has failed to publish the results.

I got so much abuse we went public about it in the end and I just love this quote... [laughter]. And you know, the problem is that if you do this kind of stuff then people leave, researchers leave, even researchers looking at viruses, they all just leave.
Researchers such as Jonathan Kerr who was looking at viruses left because he could not get funding to do research. He made interesting points to the Gibson inquiry suggesting it was hard to do anything in the UK that disagreed with the bio-psycho-social views.

This is the things that really annoyed me actually, I was accused of using children as guinea pigs. I actually got hte Church Times to run an apology, heh. But this is in the Church Times. Reported to the NSPCC. Reported to the GMC.

She was using children as guinea pigs - that is what a trial involves!. But the point that was raised is that trials should be run on adults before children. In the case of Smile there was no prior trial on adults despite a constant commercial push by the lightening process people to sell to ME patients.

She made claims that ME was different in children than adults but I've not seen data to back that as a solid conclusion. There is the 2 hump Norwegian paper which perhaps suggests two different things or two age groups but the first hump goes into early adulthood so based on this a trial could have been done on younger adults.

I'm always being reported to the GMC, it's kind of standard now. In fact I'm in a six months window when I'm not currently reported to the GMC. Ahh... this is good. What's funny about this is the e-mail said 'I'm going to cut your balls off' - sorry. 'Prepare to meet your maker.' Okay. Undeterred, I decided... [more about GETSET].

Having encountered Crawley as a doctor I am not surprised she is being reported to the GMC. From my experience I think she acts unprofessionally. But the GMC seem determined not to look. When it comes to the way children are treated things do get very emotional - that is no excuse but it is very hard to stay rational when you think your child is being mistreated by a doctor.

43:00 - Gets given flowers from AYME on behalf of every single child she's treated in clinic and done research for.
I find that offensive as I don't want AYME to present flowers to her on behalf of my child who I think was mistreated in her clinic.
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
26:30 - starts talking about treatment. [roughly]"I've reviewed the world's literature and I can tell you that if children get specialist medical care then 2/3 will recover at six months, and this compares to less than 10% for those who don't get specialist treatment"
I would be surprised if there was a sufficient body of work in the world literature that would allow that claim to be made. It would be interesting to see what solid studies she quotes - because I cannot think of any. The claim is around treatments not just recovery rates so she needs to show children getting treatment are much more likely to recover than those who don't.

It doesn't really fit with the criteria of being ill for 6 months before a diagnosis of ME/CFS is made. At what point are these children getting specialist care?

The Dubbo studies which followed adolescents from the time they were diagnosed with particular viruses showed 90% recovered by 6 months. Only the 10% not recovered at 6 months were considered for a diagnosis of ME/CFS. Following this 10% for a further 18 months showed most of those recovered too. Their conclusions were there was nothing in the treatment or any psychological factors that made a difference to recovery rates. The only difference they could see was that those more severely ill with the triggering virus were the ones less likely to recover.
 

user9876

Senior Member
Messages
4,556
It doesn't really fit with the criteria of being ill for 6 months before a diagnosis of ME/CFS is made. At what point are these children getting specialist care?

The Dubbo studies which followed adolescents from the time they were diagnosed with particular viruses showed 90% recovered by 6 months. Only the 10% not recovered at 6 months were considered for a diagnosis of ME/CFS. Following this 10% for a further 18 months showed most of those recovered too. Their conclusions were there was nothing in the treatment or any psychological factors that made a difference to recovery rates. The only difference they could see was that those more severely ill with the triggering virus were the ones less likely to recover.

I think one of the issues is they talk about 3 months to diagnose ME in children which will get even bigger numbers. I think the IoM guidelines were good here in that they said a diagnosis should only be confirmed after 6 months but it can be assumed before that in terms of advice and any treatments.

Children will be picked up quite quickly in the UK because of school absence. Parents quickly need to demonstrate illness to schools to avoid fines etc so doctors quickly become involved.

I suspect Crawley is misleading herself in that there are people who get better after a post viral illness which is what the Dubbo study showed.
 

anniekim

Senior Member
Messages
779
Location
U.K
"I've reviewed the world's literature and I can tell you that if children get specialist medical care then 2/3 will recover at six months, and this compares to less than 10% for those who don't get specialist treatment"

Do you think the only thing she is basing this claim on is the Dutch fitnet study? She cleverly makes out there is an abundance of studies globally when there is nothing of the sort. Also I presume her specialist medical care is CBT and GET?
 

Solstice

Senior Member
Messages
641
Do you think the only thing she is basing this claim on is the Dutch fitnet study? She cleverly makes out there is an abundance of studies globally when there is nothing of the sort. Also I presume her specialist medical care is CBT and GET?

Maybe it's not the place, but i'm always astonished noone is asking these kind of questions.

"I've reviewed the world's literature, yada yada yada"

And noone pipe's up to ask: well, what research was it that pointed to the 2/3 recovery rate? It's just taken at face value.
 
Messages
2,125
I did just try to listen to it.
My PC threw a complete wobbly, and while I was frantically trying to shut the tab down I had to listen to the guy doing the introduction telling us how wonderful EC was and that for her to become a Prof. her eminent peers had to agree that her work had been outstanding and worthy of worldwide acclaim.........
I haven't attempted to listen to it again as I and my PC are clearly suffering from Post Esther Malaise.
 

user9876

Senior Member
Messages
4,556
I did just try to listen to it.
My PC threw a complete wobbly, and while I was frantically trying to shut the tab down I had to listen to the guy doing the introduction telling us how wonderful EC was and that for her to become a Prof. her eminent peers had to agree that her work had been outstanding and worthy of worldwide acclaim.........
I haven't attempted to listen to it again as I and my PC are clearly suffering from Post Esther Malaise.

I think the question is who are her peers who vouched for the quality of her work. Was it those from a small group who push CBT/GET onto ME patients if not had they read her work with a critical eye. Why did they not wonder why the smile trial results were not reported. I speaks badly for their judgement,
 

Daisymay

Senior Member
Messages
754
I think the question is who are her peers who vouched for the quality of her work. Was it those from a small group who push CBT/GET onto ME patients if not had they read her work with a critical eye. Why did they not wonder why the smile trial results were not reported. I speaks badly for their judgement,

I tend to think people don't make any judgement at all, they just blindly believe, plus it fits their prejudice about this illness and about patients.
 
Messages
20
I think the question is who are her peers who vouched for the quality of her work. Was it those from a small group who push CBT/GET onto ME patients if not had they read her work with a critical eye. Why did they not wonder why the smile trial results were not reported. I speaks badly for their judgement,

Too many people are afraid of EC et al. Got this from someone too afraid for his career to stand up to her...
We need more straight-talking people like Prof J Edwards with his recent message to EC...
 

user9876

Senior Member
Messages
4,556
Too many people are afraid of EC et al. Got this from someone too afraid for his career to stand up to her...
We need more straight-talking people like Prof J Edwards with his recent message to EC...

It does make a mockery of her accusation of threats from patients when it is other professionals who are worried about speaking out about her. I've also heard that she gets nasty when challenged. For a chair (i.e. to be made professor) the referees should be senior and hence shouldn't be worried but I suspect we could guess a who they may be.

Jonathan Edwards is in a position where he can speak as he pleases because he has retired - although I suspect he would speak out anyway.
 

Chrisb

Senior Member
Messages
1,051
I suggest that the biography, posted above, possibly has important implications for MEGA. It might have been wondered how, since the apparent retirement of White, an application for funding into research on adult ME could reasonably proceed without a recognised expert on adult ME. It seemed likely that some sort of fudge was in the offing. Here I think we have the answer.

"Esther leads a research team which investigates the epidemiology and treatment of CFS/ME in children and adults."

Was this generally known? What is the claimed expertise of this research team in adult ME?
 
Messages
20
I suggest that the biography, posted above, possibly has important implications for MEGA. It might have been wondered how, since the apparent retirement of White, an application for funding into research on adult ME could reasonably proceed without a recognised expert on adult ME. It seemed likely that some sort of fudge was in the offing. Here I think we have the answer.

"Esther leads a research team which investigates the epidemiology and treatment of CFS/ME in children and adults."

Was this generally known? What is the claimed expertise of this research team in adult ME?

Yes, i was wondering that, too.
All along I have been baffled by the fact that she is spearheading the MEGA juggernaut involving 10,000 adults (as well as the 2000 kids) despite the fact that she is a Paediatrician & has not worked iwth adult patients.

As for the rest of the research team, I think only Holgate has had adult ME patients (though he has stated that he does not consider himself an expert!) & maybe the new Psych on board, Carmine Pariante, has seen a few.

Several of the research team have already publicly stated that they know nothing about ME/CFS (probably leaving the disease knowledge side of things to Crawley & Holgate which hardly bodes well) & it would seem that some of them struggle to even say CFS confusing it with CSF (cerebrospinal fluid) or MS!

I have become increasingly anti MEGA over the months, the more I have learnt & heard about those involved & I just hope that no-one wastes their funds on this project...& that if MEGA does get its funding, then I hope the ME Association & MERUK will walk away.

I note the latest article in the MEA magazine, ME Essentials, pg 31 by @CharlesShepherd entitled ' It's MEGA but will the final design meet with our approval?' I sincerely hope that both the MEA & MERUK will listen to INFORMED patient views on this matter & have the courage to make known their criticisms & leave.
 

Cinders66

Senior Member
Messages
494
Whinge whinge whinge fest. she and SW really can throw pity parties

She keeps talking about treatmemt itS just freaking management support

She ends saying if those who campaigned against her worked with her we'd be ten years forward - what a blooming cheek when we have an appalling neglectful funding set up and a distorted uk CFS model and narrative putting off research.

Peter white was there , her chum and wonderful CFS researcher

Then she plays the I'm a wonderful woman and mum and look at my kids, here her and here, ..,,

Then she sounds tearful. Poor her.

Let's sort out this illness she says - yes Esther that's what sick adults who don't just bounce back like your two month ill fatigued 1in 50 kids want too but you don't see how your narrative hinders

Finally she was spinning a lot about the interest to the FItnet trial (interest signals support) because it didn't just happen it was an aggressive SMC media propaganda thing which hyped up the treatment and surprise surprise desperate naive parents say to each other 'if only little Jenny who gets nothing could get this wonder cure". I'm fully in favour of more support for kids and think support early will help (CBT not needed) but interesting she thinks an internet service is way to fix the dire lack of care for PWME - not actual medical services/better medical training and so on.

From a stats view she thinks 1 in 50 have it but only 1 In 1000 severe that's at odds with the general view. Of 1 in 240. 1 in 50 means for every 400/year high school, 8 kids have CFS - no, she presents those only able to attend some school as the really severe when they aren't but that's because her context is milder chronic fatigue

What is clearly lacking in uk, to counter her, are as vociferous adult CFS physicians giving the more standard worldwide serious multi-system disease narrative.
 
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