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Recording of Esther Crawley inaugural lecture on February 24

Discussion in 'General ME/CFS News' started by Dolphin, Feb 25, 2017.

  1. Dolphin

    Dolphin Senior Member

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    Somebody sent me this and said I could post it where I wanted:
    https://www.dropbox.com/s/voiojalez8nus86/Esther Crawley inaguaral compressed.mp3?dl=0

    Here are some informal notes that somebody made:

     
  2. Dolphin

    Dolphin Senior Member

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    http://www.bristol.ac.uk/ccah/seminars/2017/esthers-inaugural.html

     
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  3. AndyPR

    AndyPR I'm a DAD, I Donate, Advocate and Demonstrate

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    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.
     
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  4. Woolie

    Woolie Annie Gsampel too

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    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.
     
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  5. user9876

    user9876 Senior Member

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    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.

    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!).

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

    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.

    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.

    We still don't know if it works because she has failed to publish the results.

    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.

    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.

    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.

    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.
     
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  6. Sea

    Sea Senior Member

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    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.
     
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  7. user9876

    user9876 Senior Member

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    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.
     
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  8. Sean

    Sean Senior Member

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    Because cultish circle-jerking is the path to good science.
     
  9. anniekim

    anniekim Senior Member

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    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?
     
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  10. Solstice

    Solstice Senior Member

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    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.
     
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  11. slysaint

    slysaint Senior Member

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    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.
     
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  12. lilpink

    lilpink Senior Member

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  13. user9876

    user9876 Senior Member

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    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,
     
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  14. Daisymay

    Daisymay Senior Member

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    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.
     
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  15. Esperanza

    Esperanza

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  16. Esperanza

    Esperanza

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    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...
     
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  17. user9876

    user9876 Senior Member

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    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.
     
  18. Chrisb

    Chrisb Senior Member

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    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?
     
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  19. Esperanza

    Esperanza

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    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.
     
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  20. Cinders66

    Cinders66 Senior Member

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    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.
     
    Last edited: Feb 27, 2017
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