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Leaflet on paediatric ME/CFS circulated by AYME to 10,000 UK GPs

Discussion in 'General ME/CFS News' started by Dolphin, Sep 30, 2015.

  1. Dolphin

    Dolphin Senior Member

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    (Not a recommendation)

    http://www.ayme.org.uk/news/-/asset...mode=view&p_p_col_id=column-1&p_p_col_count=1

    Direct link:
    http://www.ayme.org.uk/documents/10..._FIN.pdf/87da9bf3-5b18-4569-b453-5c956790c9c6
     
    Woolie and Esther12 like this.
  2. Dolphin

    Dolphin Senior Member

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    Not sure of the evidence for this?
    I think an early diagnosis can help; not so sure about CFS/ME treatments one gets in UK NHS clinics.
     
  3. Sidereal

    Sidereal Senior Member

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    WTF? Where are they getting these figures from? What "specialist treatment"? There is no treatment.

    :eek:
     
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  4. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Best guess is E Crawley. (not a recommendation)
     
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  5. Dolphin

    Dolphin Senior Member

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    Somebody has alerted me to this reference (in tiny print) at the bottom
    It's an open access paper: http://bmjopen.bmj.com/content/1/2/e000252.full
     
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  6. Tom Kindlon

    Tom Kindlon Senior Member

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    Is there a thread on the Crawley paper on Phoenix Rising? I imagine there is but I couldn't find it on a quick search:

    Here's a comment I wrote on the Crawley paper:
    http://bmjopen.bmj.com/content/1/2/e000252.abstract/reply#bmjopen_el_156

    A bit long-winded. You don't need to read it to comment on the leaflet.

     
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  7. Dolphin

    Dolphin Senior Member

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    Not convinced of this. If patients are going to school during the week, they're probably getting up around 6:30-8 am. I'm not sure of any evidence that patients should be forced up at such a time at weekends.
     
    Last edited: Oct 1, 2015
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  8. Dolphin

    Dolphin Senior Member

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    I don't get the impression that such long appointments with doctors (as opposed to other therapists) are the norm in NHS services.
     
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  9. Dolphin

    Dolphin Senior Member

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    I'd say expecting children to do a full day at school five days a week (esp. with associated homework) would be a problem for many but there's no mention of this.
     
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  10. Effi

    Effi Senior Member

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    And again the stupid 'sleep hygiene' argument. Useless. I tried it. It changed NOTHING for me. I wish they stopped promoting this as anything of any value. They're making parents of pwme feel guilty about their kids not getting restful sleep. As if they're not feeling bad enough already. ugh.

    PS: @Dolphin the ayme link in your post has a space too many. (Right now it links to a blog website commercial ;) )
     
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  11. Dolphin

    Dolphin Senior Member

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    The group picked up by surveillance had an average SF-36 physical function score of 77.5 (SD: 19.5).
    Most of these would then have had normal physical functioning according to the PACE Trial authors before they went to the clinics.

    They were missing school so it is good that 12 out of the 23 did get back to full-time school (they had to be missing >20% of school before this). But a lot of them would likely have got back to school full-time anyway or if they had just got a diagnosis.
     
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  12. Dolphin

    Dolphin Senior Member

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    Not sure where the 8% figure is from. I just re-read Crawley et al. (2011) and it's not from that.
     
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  13. Esther12

    Esther12 Senior Member

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    I don't see how that really strong claim can be justified. The whole leaflet is embarrassing: it seems written to drum up business for specialist services rather than help patients.

    Just including this section here because there were teasers for it above:

     
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  14. Sean

    Sean Senior Member

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    Nothing in the scientific literature justifies this shabby dangerous assertion. It is a shameless lie.

    These people really are prepared to trash our lives just to avoid facing the truth about their grotesque incompetence.

    :mad:
     
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  15. Valentijn

    Valentijn The Diabolic Logic

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    What a bunch of useless, WRONG, and condescending bullshit.

    AYME is now officially a propaganda machine for psychobabblers, with no concern at all for the well-being of anyone with ME. Esther Crawley is an abusive fraud and should not be anywhere near anything involving ME, children, or any other vulnerable patients.

    With charities like these supposedly on our side, who needs enemies?
     
    Last edited: Oct 1, 2015
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  16. Valentijn

    Valentijn The Diabolic Logic

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    AYME has an email address in their contact info: info@ayme.org.uk

    It might be a good idea for all of us to share polite and constructive feedback, especially in regards to their factually incorrect statements which are contradicted by research, or unsupported by research.
     
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  17. user9876

    user9876 Senior Member

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    Its not clear to me what they are claiming but the usual guidelines say about being ill for 6 months before a diagnosis as there could be other temporary causes. For children the guidelines say 3 months - I never really understood why. So are they just saying that most of the patients that they see and claim have ME/CFS are actually in this temporary illness group that would, if they were adults, be discluded from the diagnosis.
     
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  18. Sidereal

    Sidereal Senior Member

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    I presume because a diagnosis of some kind must be made due to state/teachers/social workers pressure on parents to explain their child's absence from school?

    So in kids the criteria are fatigue + one other symptom for three months. This group of cases probably includes a vast number of self-limiting post-infectious fatigue states which resolve spontaneously but which serve to inflate the "recovery with specialist treatment" figures. Growing up I knew plenty of kids/teenagers, including my brother and next-door neighbour, who had post-EBV or post-influenza debility for a few weeks or months, who missed school for a month or three, and they all made full recoveries. Their illness had zero in common with mine except for the "severe fatigue" red herring. I doubt that whatever Crawley and her associates did to those kids was in any way causally related to their recovery. On the other hand, their graded exercise "treatment" approach is practically guaranteed to turn the small % of genuine ME cases from mild/moderate to severe/very severe.
     
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  19. Cheshire

    Cheshire Senior Member

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    How could anything good be expected from someone promoting the Lightning Process?
    This is beyond crap. Crawley has not the slightest sense of moral and intellectual honesty.
     
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  20. user9876

    user9876 Senior Member

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    Yes I expect that she (because I think this is a leaflet promoting Esther Crawley) claims for those who would recover anyway. To look at the reasonableness of claims for a specialist service it is useful to look at what the service actually does. From my experience Crawley's Bath service basically has an activity colouring chart - I was going to say to initially help with pacing then to basically use a graded activity approach to increase activity but I think there approach is also to try to even out activity rather initially rather than pace in terms of stay inside a variable energy envelope. But its then a service that only does occasional reviews. I found with their activity system that just adapting what counted as activity based on health levels produced a fairly even activity chart - probably not really in the spirit of things but that's how it seemed like the only sensible to operate it.

    Crawley has two approaches to those who don't get better. She basically de-lists non-compliant patients (i.e. those who tell her service that what they say is unhelpful).

    With us she had a different approach (and I had prior warning of this so I believe it happens to others) where she claimed to have cured my childs CFS with her treatment program but that my child was still ill due to a disssociative disorder due to being ill. She also said that CFS was time limited so it couldn't still be CFS. But then her ego wouldn't allow her to question her original conformation of a diagnosis so she has to claim that is 'cured'. She did say 'there are new symptoms that don't match CFS' but she was misunderstanding what we said as my child told her and the symptoms fitted an ME description anyway. Then she removed my child from her service. She also tried to get the local CAMHS (child and adolescent mental health service) to diagnose pervasive refusal syndrome and lock my child up in a mental health unit but without recording that in letters. (But being forewarned I recorded consultations!).

    So what is the treatment that is likely to cause such claimed recovery rates? My suspicion is it is a mixture of temporary post viral fatigue and patient dumping. As we discover more and more about possible underlying causes these recovery claims look more and more suspicious and wrong.
     
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