Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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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. TiredSam

    TiredSam The wise nematode hibernates

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    I thought of a much ruder caption ending in the words "... this big!" but decided not to go there so as not to lower the tone.
     
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  2. Barry53

    Barry53 Senior Member

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    @Keith Geraghty: I agree with you whole-heartedly.

    There definitely seem to be some kind of sociopathic and/or narcissistic traits in play with these people, and coupled with their psychiatric knowledge, is a deeply troubling combination. The notion of high profile psychiatrists, lacking the empathy or ethics necessary for their profession, but having the manipulative skills to convince people that that is exactly what they supposedly are doing is ... like something out of Gotham City's underworld.

    A classic trick of people engaging in smear campaigning propaganda is to apply derogatory labels to those they seek to decry: call them activists, lobby groups, vexatious militants, etc. So EC immediately deceives the innocently uninformed by smear-labelling those she wants to set people against.

    Another low psychological trick is to discuss two things in conjunction with each other, raising the subtle inference in listeners' minds that there is a correlation, even when there is not. So talking about brave people most listeners will inevitably (and rightly) admire for how they stood up against oppression and adversity, whilst in the same breath talking about herself and colleagues standing firm against those she wishes to defame, is an age-old strategy for triggering unwarranted associations in people's heads. But it works with the innocently uninformed.

    Subtly abusive folks operate on the principle of plausible deniability - being able to claim they never stated such an association, and that for anyone believing such things - it must be all in their heads. And for a while that strategy works, but only so long as the deniability remains plausible - which it does not. The BPS people need to consider that one day they will hopefully be called to account by the justice system, and that assessment of abusive behaviour is not based simply on one or a few instances, but on patterns of behaviour, because it is those patterns that expose what the few instances do not ... whether the deniability is plausible or not. The BPS people are leaving a mega-clear trail of their behaviour patterns, and I suspect they genuinely do not comprehend this. They know no better than to blindly persist, in there increasingly desperate efforts to defend the indefensible, never thinking that each example renders their deniability less plausible. I would be fascinated to read a forensic psychologist's report on some of these people; it has to be a forensic psychologist, because normal psychologists are too easily fooled, as I understand it. A good fictional insight into such behaviour is "Secret Smile" by Nicci French.

    And of course, playing the victim to perfection is a classic predatory trick of the such people. As is being more about emotive talk than about substance.
     
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  3. A.B.

    A.B. Senior Member

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    Accusing your opponent of doing what you do yourself is an old trick that the PACE authors keep using.
     
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  4. Barry53

    Barry53 Senior Member

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    Precisely. Especially by the subtly abusive. It is a way of deflecting the notion that they themselves could be guilty of such things. I sometimes wonder if it is a form of self denial - actually convincing themselves of their own deceptions.
     
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  5. Art Vandelay

    Art Vandelay Senior Member

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    I think this is a good word to describe Crawley et al's work:

    1k9d1b.jpg
     
    Last edited: Mar 20, 2017
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  6. suseq

    suseq

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    Tragedy. When you lose control and you got no soul. It's Tragedy ....

    (Choreography & vocals: Steps; Lyrics: The Bee Gees)

    EDIT: Yay! Been trying to work out how to do this properly all morning!
     
    Last edited: Mar 20, 2017
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  7. slysaint

    slysaint Senior Member

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    Ah the power of PR.
    Just did a Google search on Esther Crawley images and the picture of Mother Theresa (on another thread) came up.
    Made my day.:rofl:
     
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  8. Somer

    Somer

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    Parents are caught between a rock & a hard place.

    EC's 'program' is perceived by (many) GPs & schools to be that which parents should of course be adhering to as she has the title of 'specialist service'. It is assumed, with little public knowledge & understanding, that she therefore has the best understanding of managing & treating M.E.

    To question & challenge her approach is to often reinforce stigma that the parents are somehow behind (or perpetuating) the illness symptoms. Without a GP willing to support (a 'diificult' case) parents can be left isolated. At its most stark schools will often only accept evidence from a specialist service to gain access to home tuition & exam concessions.

    To question and challenge EC is to reinforce her perception that there must be 'barriers to recovery' from the parent and/or child.

    Her program is an 'increase program' - one where activity is supposed to be increased by 10% every week. Schools start to question why increases cannot be made. If you are lucky enough to be the parent of a child who is already improving then that might be manageable.

    People age out of Bath at 18 whether improving or not. Does EC do any follow up studies?

    Young people can be taught to self manage and their parents can be helped to feel empowered to support them & be their advocate. Following someone else's priorities and targets can undermine the young persons sense of self worth (especially when 'targets' are constantly unobtainable) and actually significantly hamper their abilities to trust and listen to their own judgements about what feels right/wrong.

    I don't personally believe in centralised specialist services that' don't want to be honest about their limitations and show no willingness to reflect on the wider ramifications of their 'programs'. I think (if any medical input is required) that good, local GP care is the way to go for young people and their families.
     
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  9. suseq

    suseq

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    Very well said @Somer. Harms caused apply generally, but are no doubt particularly devastating on the lives of children and their families given impact on education/social interaction, natural instincts and general wellbeing.

    I truly hope sound bio-medical science and common sense wins through very soon.
     
    Last edited: Apr 11, 2017
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  10. UKmum

    UKmum

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    This is part of the reason for the stats about recovery. I believe there are many more that don't recover but drop out of view either because moved out of pediatric services or leave or are pushed out because not improving as expected under the increase regime. Glad you found this thread- did you listen without feeling nauseous?
     
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  11. user9876

    user9876 Senior Member

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    I remember being told that Crawley was dropping patients that she saw an non-compliant out of the service. Later I wondered if I should have reinterpreted that comment to mean here is an excuse to drop out because non-recovery and getting worse can bring bad things. But I was never sure.

    Later Crawley claimed to have cured my child of CFS even though she was worse (with pretty much the same symptoms) and said she had a dissociative disease due to the stress of being ill. This happened after the local paediatrician asked for a review. Crawley then tried to get the local CAMHS consultant to give a PRS diagnosis.

    So I think any recovery stats from her service may well be dodgy.
     
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  12. Somer

    Somer

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    I don't think there are any recovery states from her actual service. The figures she always quotes (2/3 recover) are based on old research (& the references to what that is are never made clear) that EC says point to young people doing better from intervention with specialist services.
    The Bath service see face to face (or Skype) every 6 weeks young people for review appointments so they should be able to extrapolate from that what improvements or not young people are making under their service.
    I think it is very much a case of what you seek you shall find. Anxiety is frequently mentioned within the Bath service. I often think if you weren't anxious before you started on their programs you have a fair chance of being a year or two in!
    An additional problem is school attendance is used as a measure of improvement (as it is 'measurable'!) not health per se. Young people may be struggling into school whilst still dealing with fatigue & other symptoms & possibly be less 'well' than some having home tutors but being able to have an overall better quality of life.
    Bath push school attendance as that is 'normal' but there is nothing normal about the way people's minds/bodies work with this illness so I think this is trying to fit a square peg in a round hole.

    I just wish they were more publically honest in particular with their communication with schools. It would dramatically help improve understanding if they said we can help with learning how to pace & establish baselines but we cannot say how long it will take for a particular child to improve and any kind of activity increases can only be made with health improvements. If a child doesn't improve with a certain time frame than that is the nature of the illness & anxiety/depression/ fear of 'moving forward' cannot be assumed as additional factors.

    I always get this sense that you have to be a 'believer' to get better under EC! Perhaps that's too harsh?? I think as soon as you start to question what's going on (or not!) then she sees you as a lost cause. You are somehow not willing to unconditionally commit to the program so therefore you will of course 'fail'... ..
     
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  13. AndyPR

    AndyPR RIP PR :'(

    I think this is quickly becoming my favourite meme to use as it applies to all those BPS believers, and that includes Crawley.
    PACEreligion.jpeg
     
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  14. user9876

    user9876 Senior Member

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    I'm not sure that they do push school attendance and they do help with home tutoring. However, a few years ago we found they new nothing about online education.
    It is measureable but others have pointed out in the past that sometimes school attendance comes at the expense of managing to do the work. So children may increase hours but not do as well than with less but higher quality hours.

    I have heard that after a while parents just tell the service what is necessary to keep them happy and learn what helps themselves.
     
  15. AndyH

    AndyH

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  16. Somer

    Somer

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    Just read this well written piece about FitNet on Tanya Marlow's blog (Nov 2016)

    FITNET – a breakthrough study with CBT? Debunking some myths about the Esther Crawley story:
    1) She’s published breakthrough research? Actually, she hasn’t even STARTED the research. Yet she’s claiming, based on an older study in the Netherlands, published in 2012, that it could successfully treat (which most people hear as ‘cure’) 60% of ME patients. This pushes at some major ethical boundaries – you’re not supposed to claim success for a trial before you’ve started it, in case it biases patients. This is especially important when the evaluation of the study depends on a patient survey of self-reported improvement or decline.

    2) Her research is a brand new method of treatment? It’s not. It’s the same old CBT/Graded Exercise program that every other research trial paid for by the UK government is researching right now, just delivered by the internet. There have been £millions poured into trials like PACE, and this is just another one.

    3) She’s treating it as a physical illness, not a behavioural disorder? Unlikely. In interviews about FITNET she was keen to say it was a ‘real’ problem, and that it was focusing on biology – for example, sorting out sleep patterns. Surely this is a good thing? Getting good sleep patterns established is useful in ME – but it’s not CBT. Most GPs could give that advice. And it would concern me if ‘getting good sleep patterns’ meant restricting sleep for ME patients, because some need to sleep a lot, especially in the early stages. From first glances, the protocol seems to focus on increasing activity (like Graded Exercise), and ignoring your symptoms.

    4) All the mother’s fault? Should you enrol your child on the FITNET or MAGENTA studies? This didn’t go reported in the press, but it’s a potential alarm bell for the FITNET study. It may well be fine, but there are a few things that combine that make me a little concerned for the parents of the children in the trial. This is my train of thought.

    a) In the Netherlands study that inspired the FITNET trial at least one third didn’t respond to the treatment. Why? Rather than blame the therapy, the Netherlands follow-up study placed the blame on ‘anxious mothers’ who focused too much on ‘bodily symptoms.’ (Of course, another way to interpret this is that the kid kept getting sicker in the trial, and the mother was increasingly anxious as the child got worse. Anxiety is only harmful if the situation doesn’t warrant it – it’s not clear from the study that the anxiety was unfounded.)

    b) Esther Crawley has previously published a study about the role of mothers in children with fatigue syndromes, associating a mother’s depression with the chance of a child getting ME, and advising ’family-based therapy’ as a result. It is noteworthy that there is a small MS study that suggested that trauma in childhood made it more likely you would develop MS – but (quite rightly) no one is suggesting family therapy for patients with MS as a cure for MS.

    c) Crawley has written elsewhere that it is likely that some with an ME diagnosis have ‘Pervasive Refusal Syndrome’, and to consider this as an alternative diagnosis when the ME is severe. As a paediatrician* she has the power to change the diagnosis. This could possibly be true for a tiny minority, but Karina Hansen (diagnosed with by a psychiatrist as having Pervasive Refusal Syndrome, although her specialist diagnosed M.E.), Sophia Mirza and other severe sufferers’ stories of being falsely sectioned raise concerns about the legitimacy of relabelling someone with ME – particularly someone with severe ME that doesn’t respond to treatment – as having a somatisation (‘psycho-somatic’) disorder.

    This all makes me wonder what happens to patients who don’t respond to Crawley’s version of CBT and Graded Exercise. Are they left alone? Are they rediagnosed with PRS? Is ‘Munchausen’s by proxy’ (where the child is not ill, but the parent treats them as though they were) suspected? Sadly some doctors do just that, and the TYMES Trust represent cases where children are (falsely) assumed to be victims of abuse (see False Accusations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis.) It is worth bearing in mind that of the 115 cases taken on by TYMES trust, 100% of the parents were cleared of wrongdoing. Likewise, Karina Hansen’s parents were investigated – and no evidence of abuse was found. It is worrying that for parents who don’t have the resources to fight the system, their kids could be taken away simply because severe ME isn’t recognised as a condition.

    For the FITNET trial, they specifically mention that they’re training the parents and children separately. There may well be legitimate reasons for this, but it greatly concerns me that a mother who is anxious about her child getting sicker could be labelled as the cause of their child’s illness. This is not what ME is – and yet there are cases every year in the UK where social services attempt to take the children away, assuming abuse or psychiatric disorder, simply because social workers and medics don’t understand how disabling ME can be. So although the FITNET and MAGENTA studies may not be making the same conclusions about parental involvement, and may have entirely different reasons for the parental therapy, whatever that entails, it does raise some questions for me that I would want answered before enrolling my child on such a study.
     
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  17. NelliePledge

    NelliePledge plodder

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  18. Esther12

    Esther12

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    It was Crawley's inaugural lecture on being made a professor.

    In this talk, the introduction mentioned how open and rigorous the assessment for being a professor is. Has any imformation about how Crawley was assessed been made public?
     
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  19. NelliePledge

    NelliePledge plodder

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    Probably not allowed to say FFS :zippit:
     
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  20. NelliePledge

    NelliePledge plodder

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    But she gives it really "cool" names like smile and FITNET so that's the main thing
     

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