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False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME) by Jane Colby

Discussion in 'Latest ME/CFS Research' started by Dolphin, Jul 25, 2014.

  1. Dolphin

    Dolphin Senior Member

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    New open-access, peer-reviewed paper:
    http://www.argumentcritique.com/publications.html
    http://www.argumentcritique.com/uploads/1/0/3/1/10317653/colby_j.pdf

     
  2. Dolphin

    Dolphin Senior Member

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    Some extracts:
     
  3. taniaaust1

    taniaaust1

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    Yeah that is so irronic esp since the word "fatigue" in the name is paid so much attention.

    Great paper.
     
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  4. Min

    Min Guest

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    Ms Colby says: "At this point many families report being given a *re-diagnosis*, as if the CFS had somehow ‘gone away’, leaving the child with some form of psychiatric illness in its wake. It would appear that these changes in diagnosis are, in effect, serving to prop up claimed CFS recovery statistics."



    The clinics doing this should be thoroughly investigated and closed down, it is scandalous. I understand they are rediagnosing the children with persistant refusal syndrome, with no change whatsoever to their myalgic encephalomyelitis symptoms.
     
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  5. Bob

    Bob

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    I have been told that a certain well-known paediatric CFS specialist re-diagnoses her paediatric CFS patients with a behavioural disorder (perhaps 'persistent refusal syndrome', but I can't remember the specific details) if the patients don't respond to treatment (with CBT/GET, when she's not subjecting them to the Lightning Process).

    Words fail me.
     
    Last edited: Jul 30, 2014
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  6. Min

    Min Guest

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    Those poor children No other neurological illness is 'treated' in this shameful way.

    I guess the nurses, physiotherapists and other medical staff involved in this abuse are 'just following orders' from doctors who have forgotten their oath to first do no harm.
     
    Last edited: Jul 26, 2014
  7. LisaGoddard

    LisaGoddard Senior Member

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    I had my first bout of ME/CFS when I was about nine or ten years old. I'd had viral tonsillitus (perhaps an EBV infection). I can't imagine what would have happened if I had been forced to exercise. With rest, I eventually recovered and was well during my teen years and twenties. In fact, I didn't get sick again until my late 20s, when I got a nasty bout of flu.
     
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  8. Sean

    Sean Senior Member

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    It is a genuine scandal that she is getting away with this. Reflects extremely poorly on the overall peer review system that she can get away with it.
     
    Last edited: Jul 27, 2014
  9. Leopardtail

    Leopardtail Senior Member

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    The Leeds CFS/ME clinic does this routinely, if they are unsuccessful, they un-diagnose.
     
  10. Valentijn

    Valentijn Activity Level: 3

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    My fatigue clinic undiagnosed me when they failed to help me. Instead of pervasive refusal syndrome (I guess I'm a bit too old), I got rediagnosed with "too fat to have CFS" :rolleyes:
     
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  11. Min

    Min Guest

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    I know an elderly gentleman rediagnosed as 'too old to have M.E.' It seems the clinics will do anything to fiddle their statistics.
     
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  12. Leopardtail

    Leopardtail Senior Member

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    where I went they gave the following diagnoses to four patients: seasonally affected disorder with diabetes and no fatigue, somatoform disorder, 'unknown neurological disorder', the fourth was 'fatigue of unknown cause' - they only had five patients with ME. They discharged #5 as 'non compliant'.

    They also had rules against discussing symptoms and diagnoses - I wonder why?
     
  13. Leopardtail

    Leopardtail Senior Member

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    I am so pleased to here that when I am 'old & frail' my ME will miraculously heal.
     
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    RULES? What kind of place is that?
     
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  15. Leopardtail

    Leopardtail Senior Member

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    That was the Leeds CFS/ME service, they also excluded family who tried to support patients being abused medically (the abuse being my personal opinion).

    It's a hospital based (WARD-40) ME service based on CBT GET with a mainly psychiatric staffing. The leeds me network used to carry a fair bit og information, but were relentlessly harassed until they removed it, you can find limited info here. They also force patients to sign a confidentiality agreement.
     
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  16. Min

    Min Guest

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    So is it possible that they know what they are doing under the pretext of 'medical treatment' is reprehensible, and do not want patients to report on this?
     
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  17. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Good grief. Is that legal?
     
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  18. Leopardtail

    Leopardtail Senior Member

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    The excuse they use is "group sessions" but the context of the agreement goes way beyond that... I suspect a good human rights lawyer could challenge it....
    Being a "mental health" ward gives them far too much power
     
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  19. Leopardtail

    Leopardtail Senior Member

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    I get they definite idea they want patients to go in blind, they definitely miss-sell they way they work.
     
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  20. mermaid

    mermaid Senior Member

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    I was in touch with someone who went there who was distraught that they reclassified her while there with MUPS (Medically Unexplained Physical Symptoms), so am interested to hear that change in diagnosis is routine.

    She was v worried that it would affect her benefits applications. She was desperate to get out of the place after a few weeks, but decided to get them to believe that she would continue with their advice/treatment at home.
     
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