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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. Chrisb

    Chrisb Senior Member

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    @Esperanza

    I originally interpreted the statement that "Esther leads a team..." as a reference to her work within the university. You, perfectly reasonably, interpret it as meaning the MEGA team. Such ambiguity is, at best, unfortunate.

    If there be no such "team" within the university the basis of any justification for leadership of the MEGA team must remain open to debate.

    EDIT
    As far as I am aware MEGA does not purport to be a prospective study into the treatment of CFS/ME and this must support the suggestion of a claim to lead a separate and distinct team studying adult CFS/ME.
     
    Last edited: Feb 27, 2017
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  2. Esperanza

    Esperanza

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    Ha! Yes, I did interpret it as the MEGA team, probably becuase I really do NOT want the MEGA thing to go ahead, not in its current form, anyway...
    I think EC probably did mean her Univ team...but ambiguity & fudging issues, statistics & detail in general, seem to be her hallmark. I think she may be delusional & actually believe the rubbish she spouts which, of course, makes her very dangerous indeed. Her obvious need to make everything all about 'her' - 'her family' , 'her career', 'her victimisation' 'her heroism' is very telling...Don't most inaugural lectures concentrate on the actual work of the person giving the lecture instead of being just one big ego trip through the family photo album?
     
    Last edited: Feb 27, 2017
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  3. alex3619

    alex3619 Senior Member

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    It is generally accepted, and I think not even remotely disputed or controversial, that most people recover from post viral fatigue. Most of those do so in the first six months. Only very rare cases for post viral fatigue last up to five years.

    ME is not post viral fatigue, or if it is its a type two, with almost zero recovery and additional complications. If you consider that most with ME who recover do so in the first year, then its likely many who have recovered will be post viral fatigue patients and not ME patients. Without a definitive diagnostic test the questions cannot be answered. Even the "experts" are left speculating.
     
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  4. slysaint

    slysaint Senior Member

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    Name one actual biological fact about ME that all of her 'years of research' has revealedo_O

    I think that both she and SW have adopted epidemiology as a means of giving scientific credibility to their 'research' but have made no attempt to back any of it up with hard quantifiable medical evidence.
    The 'if you say it often enough it must be true' approach gets you nowhere .
    eta: unless you are the 'researchers' in question
     
    Last edited: Feb 27, 2017
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  5. alex3619

    alex3619 Senior Member

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    It got them research funding, recognition, and in one case a Knighthood.

    PS ... and political influence.
     
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  6. lilpink

    lilpink Senior Member

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    So do I, so do many.
     
  7. lilpink

    lilpink Senior Member

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    The number of adults wanted for the MEGA Trial is virtually identical to the number that they already have 'psych' data from in the National Outcomes database, which EC manages. I have to assume they will use this combination of data to back up any psych theories that they claim for CFS/ME.
     
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  8. Binkie4

    Binkie4 Senior Member

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    I am worried about the NICE guideline review. I understand EC was on the last review Committee. Seems a powerful role in that current medical practitioners have their hands tied by CG53.

    EC strikes me as someone who would be very powerful in a group situation influencing/ shaping opinion/rebuffing opposing views.

    Does anyone know who is deciding if CG53 needs reviewing, decision summer 2017. Is it a Committee, officers of NICE, are there lay reps as there would be in a full review? Informal decision makers?

    After the release of the PACE data, getting CG53 changed seems imo to be the next big hurdle, and while we still have no biological treatments or indeed a biomarker, my fear is we could be vulnerable to reuse of the Pace rubbish.
     
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  9. slysaint

    slysaint Senior Member

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    Last edited: Feb 27, 2017
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  10. AndyH

    AndyH

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  11. Binkie4

    Binkie4 Senior Member

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    @slysaint

    Thank you for the link to the earlier discussion which I had forgotten about and will reread.
    Still have no understanding on who is doing the review of whether we need a review?
     
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  12. JoanDublin

    JoanDublin Senior Member

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  13. A.B.

    A.B. Senior Member

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    It's just self promotion, disguised as wanting to help kids.

    She runs a CBT clinic and therefore her concept of CFS is that of a condition that is common and easily treated because that is good for her career.

    The real cases meanwhile are left without access to any treatment because CFS is after all, a mental health condition that can and must be treated with CBT. And if it doesn't work that surely means the person has some other disorder, perhaps pervasive refusal syndrome?

    Her talk about biology and finding other effective treatments is just PR: she hates the Rituximab studies. Obviously because they don't fit into the narrative that CBT can treat the illness.

    She has learned from Wessely and White to use criticism to her advantage: all the critics are silly and stupid. Which is quite effective at discouraging the real critics from speaking out.

    The association between CFS, adversity and the like is probably because her case definition is rubbish and picks up many cases of mild depression. Which coincidentally respond well to a placebo treatment and make it easy to claim to be successfully treating kids.
     
    Last edited: Feb 27, 2017
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  14. Chrisb

    Chrisb Senior Member

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    Pass me the sycophancy bucket to catch the emanations of the pro-vice chancellor. Should not universities have contra-vice chancellors?
     
  15. user9876

    user9876 Senior Member

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    She is too arrogant to say it must have been PRS if someone doesn't get better in her clinic. Instead it was CFS and she has cured that but the stress of being ill caused PRS. She wouldn't like to think she made a mistake in diagnosis or failed to cure the problem.
     
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  16. Chrisb

    Chrisb Senior Member

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    "....and you know, the problem is that if you do kind of stuff, what happens is that people leave, you
    know, researchers leave. Even, researchers looking at viruses they all leave."

    This quote is taken from the transcript kindly provided by @AndyH Can anyone name a single researcher looking at viruses who has left the field as a result of threats or abuse from the ME community? It seems highly improbable. Lack of funding I could believe. She must think that this approach never did SW's career any harm.
     
  17. slysaint

    slysaint Senior Member

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    so EC explain the recent upsurge in biomedical research for ME(?)

    AND far from trying to put the real researchers off..............patients are largely funding it.
     
  18. Esther12

    Esther12 Senior Member

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    Do we know that? I'd be surprised if she'd said anything like that. Worth trying to avoid making unsafe criticisms of people like Crawley, particularly when they can be used to try to discredit legitimate criticisms.

    Thanks. Now we just need a copy of the slides! Looks to me like more evidence that Crawley is the biggest threat to progress patients face in the UK.

    They said "it is not a secret process"... I wonder if that means that records of how it was decided Crawley should be made a professor are public record?

    Is there any good evidence that GET is useful for improving fitness?

    Oh... no need for evidence, we've got some anecdotes:

    Impressive stuff.
     
    Last edited: Feb 27, 2017
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  19. A.B.

    A.B. Senior Member

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    In general it is obvious that CBT/GET promoters don't like the biomedical literature. Most of the time they pretend that it doesn't exist.
     
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  20. Esther12

    Esther12 Senior Member

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    I still think it's well worth being cautious, unless you have a direct quote from the person that fully supports the claim you're making.
     
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