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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Crawley: ‘It’s personal to me’: A qualitative study of depression in young people with CFS/ME

Discussion in 'Latest ME/CFS Research' started by Cheshire, Oct 16, 2016.

  1. Cheshire

    Cheshire Senior Member

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    ‘It’s personal to me’: A qualitative study of depression in young people with CFS/ME

    http://ccp.sagepub.com/content/early/2016/10/13/1359104516672507.long
     
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  2. trishrhymes

    trishrhymes Senior Member

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    'Paediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) has a prevalence of 0.4–2.4% and is defined as ‘generalised disabling fatigue persisting after routine tests and investigations have failed to identify an obvious underlying cause’.

    So now we have it in writing. Crawley thinks ME is fatigue. She's using the Oxford definition still. Oh dear.

    And on the basis of 'structured interviews' with nine youngsters, she concludes that ME causes depression. I wonder whether she was able to tell whether some of them actually had primary depression causing their fatigue.

    Edit: Or the third option, that there is some other factor causing both depression and fatigue.

    I haven't read the full paper. I can't bear to.
     
    Last edited: Oct 16, 2016
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  3. Valentijn

    Valentijn Senior Member

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    Funny how Crawley always omits to mention that ME/CFS fatigue is "characterised by post-exertional malaise and/or fatigue", as described by NICE. She literally seems to ignore it in every paper. She even leaves off "physical or mental exertion makes symptoms worse" from NICE's list of optional symptoms. She really is not qualified to diagnose anyone, in any circumstances :meh:

    HADS is a horrible questionnaire for people with chronic, multisystem, and/or untreated diseases, especially if they are outpatients. HADS is designed for people having a normal hospital stay for acute problems, and are being supported. It equates the incapacity to do things with disinterest due to depression.

    She's also screwing around with the scoring again. A score of 11 or greater is needed to diagnose depression using HADS. But she's using a score of 9, citing to a paper from 1999 which doesn't seem to have any support. Another study of HADS in healthy adolescents has 11% as depressed if 10 or higher is used, or 34% if 7 or higher is used.
     
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  4. Valentijn

    Valentijn Senior Member

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    Awareness of limitations and repercussions apparently equates to stress stopping people from doing things:
    Ironically, the person they hold up as having a positive outlook attributed it to pacing:
    The children with ME are blamed for how they react when friends dump them:
     
    Last edited: Oct 16, 2016
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  5. Valentijn

    Valentijn Senior Member

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    Depression and ME/CFS only resemble each other if you're an incompetent quack. The symptoms are completely different, unless you have an unhealthy fixation on reducing everything to simple fatigue.

    Yeah, here's our conclusions about ME/CFS patients with depression, but we didn't actually check to see if they're really depressed or not :confused:

    It's quite bizarre that they're claiming this as a "Key Point" and putting it in the abstract, despite that it's just a tidbit pulled from another study:
    And the study they pull that from (another Crawley masterpiece) uses a different diagnostic method and different age ranges, to conclude that depression is 10 times as common in children with ME/CFS compared to healthy children.

    This is an absurd level of amateurism from a supposed CFS expert.
     
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  6. Luther Blissett

    Luther Blissett Senior Member

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    'Unable to take pleasure from activities...' , 'I think well I was happy about seeing them...'

    Maybe it's just me, but my reading says the young person was both happy and sad.

    Seems like a wise reaction to a bad situation, with insight and a wider grasp of the social situation.

    Way to make loads of assumptions about the personal value of doing hair.

    The young person seems to me to be saying that doing their hair before was something 'simple' which suggests no elaborate rituals, or instrument use, which I would expect of a young person who had a sense of 'enjoyment and/or achievement in the activity'.

    Some young people just see hair as hair.

    This is not in my view a sign of current or emerging pathology.

    Being unable to do routine things does indeed take 'quite a bit of getting used to.'

    Because a well known feature of Depression is the enthusiasm for creating and developing new relationships.
     
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  7. RogerBlack

    RogerBlack Senior Member

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    If you didn't know the author, this might be quite a positive result.
    Does anyone really believe that this isn't true?
    Of course, if this study is aiming at getting more funding for CBT treatment around false illness beliefs with a poor case definition in children - ... :(
     
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  8. worldbackwards

    worldbackwards A unique snowflake

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    Of course. But considering how she operates, it's a stretch to take anything at face value from her anymore. And her constant expansion of the pool of patients that she treats only serves to muddy distinctions and make her methods of treatment look better than they are, rather than find out anything about ME at all - it's all 'fatigue' to her.
    I wonder what it would do to a child's mental health to have their every action scrutinised, pathologized and declared wrong by a figure of authority, who's perceived 'right' way of doing things just made things worse, but had to be adhered to to gain approval.

    Perhaps Dr. Crawley should do a study. Perhaps she already is.
     
    Last edited: Oct 16, 2016
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  9. Valentijn

    Valentijn Senior Member

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    This first part is reasonable - chronic illness can create situational depression. But if you factor in other claims which tie in with this one, such as 10x the rate of depression in ME/CFS versus normal population, resulting from severe methodological fiddling, it doesn't look so good.

    This is implying that every young ME patient should be treated as if they have or will have depression, regardless of whether or not they actually do. Given that it's a minority with depression, even when astoundingly overdiagnosed by Crawley, this is a somewhat repugnant attempt to overreach.

    And the plea to waste more money on largely irrelevant research while biomedical research is grossly underfunded. And no doubt she wants that money to be given to herself for further research, despite that she's just finished demonstrating her own incompetence.
     
  10. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    In my opinion, all funding to this woman and her cronies needs to be cut off. Those children need a proper specialist who actually understands what ME is and how to diagnose it. She can't tell the difference between ME and depression? She hasn't got a clue, and now she's on the MEGA list. I will not support anything that includes Crawley.

    As for this:

    'Paediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) has a prevalence of 0.4–2.4% and is defined as ‘generalised disabling fatigue persisting after routine tests and investigations have failed to identify an obvious underlying cause’.

    I didn't have fatigue when I fell ill at 19, or the year after that when I first looked at an ME leaflet. I had immune, viral, neurological, cognitive and eyesight problems, irregular temperature control, and a whole bunch of other things completely unrelated to that ridiculous and incompetent definition of ME.
     
  11. slysaint

    slysaint Senior Member

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    So many things wrong with all of it.
    But one thing that I can't understand is the questionnaire includes prompts throughout; I worked in market research many years ago and the one thing we were taught not to do (because it obviously influences the responder) is prompt. They were blatantly telling them what to say.
     
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  12. eafw

    eafw Senior Member

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    This is lazy, meaningless non-research. There's a lot of it around unfortunately, but this is a supposed "expert" in the field building a career on this rubbish.

    They even say in the paper "Several studies have shown that chronic illness in childhood has a substantial impact on functioning and can lead to a sense of loss and psychological distress". So, nothing new here at all (never mind the whole "events that are distressing to humans can cause distress" statement of the obvious thing).

    And her definition of ME as "generalised disabling fatigue persisting after routine tests and investigations have failed to identify an obvious underlying cause". Maybe we could ask the CMRC if that's how they see it too ?
     
  13. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    The message seems to be that if you want to answer a research question and cannot think how to do it why not ask the patients to tell you the answer?

    It seems to me that if there is any material here it has nine authors, none of whom are mentioned.
     
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  14. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    And what exactly is this phrase 'it's personal to me' doing in the title of this 'research paper'? I should think ME is personal to the person with it.

    I get the sense of a troupe of majorettes coming out before the American Football game showing off their 'qualitative research' (nudge nudge) before the heavyweight almost-controlled trialists come on. This is certainly a way to destroy your credibility as a scientist.
     
  15. trishrhymes

    trishrhymes Senior Member

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    i've just glanced at the paper to confirm what others here have revealed - she quotes verbatim whole sentences from what the youngsters said. Surely this is unethical in a study involving 9 children.

    If the PACE authors could pretend individuals might be identifiable from an array of numbers, how much more might these children be identifiable by, for example, their parents or other family members, teachers etc. who might well read the paper.

    Any one know what the ethical law is on this?
     
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  16. RogerBlack

    RogerBlack Senior Member

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    Paraphrasing the PACE trial judgement - it is not 'identification' if the person themselves can identify their comments.
    If the patients did not give permission for their words to be published, then it might be problematic legally only if others, with some degree of likelyhood could identify them.
    However - if they gave permission, or their parents - it's not a legal issue.
     
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  17. Luther Blissett

    Luther Blissett Senior Member

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    How would you rate this piece of poor research on a scale of 1-5?
    1 - An abomination to the world of Science
    2 - Bog standard poor
    3 - Should do better
    4 - Full of faults but well meaning
    5 - Un-interpretable but at least they tried

    :p

    Exactly. I remember reading about a young boy with disabilities, who had never been invited to a birthday party by his classmates, even though they were not overtly hostile to him. Parents were scared in case something happened at a party. It was obviously his mental attitude that was at fault. :bang-head:

    Nevermind all the studies showing incidence of bullying to disabled children, etc. If only there was such a subject as Disability Studies in which comparisons and contrasts could be studied.

    Bad at the Bio, bad at the Psycho, and bad at the social.
     
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  18. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Assessment and Treatment of Patients with ME/CFS: Treatment Guidelines for Psychiatrists
    Eleanor Stein MD
    2005
    http://emerge.org.au/wp-content/uploads/2015/01/Clinical-Guidelines-for-Psychiatrists.pdf
    Page 12
    The above paper does a much better job of describing the management of co-morbid mood disorders.
     
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  19. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think it might well be a legal issue in fact. I see no justification for parents giving permission for children's accounts of their illness to be published. Moreover, informed consent for minors is an extremely difficult area in law and rightly so because minors may very well have very different perceptions of what they want to be made public (or what sort of treatment they would have wanted) in years to come.

    Since the paper has no scientific merit I think it might be very difficult to justify verbatim children's reports. Stigmatisation of illness is a popular buzzword. This looks to me like a typical way of blowing up the stigma by busybodies.
     
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  20. A.B.

    A.B. Senior Member

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    One gets the impression Crawley is shifting her focus to a new set of symptoms that can serve as career opportunity, now that the future of treating physical symptoms with CBT and GET and the like looks increasingly grim.

    Psychoanalysis used to be an alternative treatment for cancer. When that idea became too bizarre, the therapists stopped trying to cure patients and instead started emphasizing how patients really needed a therapist to deal with having cancer.

    A positive Rituximab phase 3 trial will destroy the illusion that CBT and GET can treat the mechanisms involved in ME/CFS*, and therapists will start looking for ways to keep their patients. What better way than to establish this idea that even though it's now a proven physical disease, there's still a lot of psychopathology that must be treated. For the good of the patients of course.

    * if recent development on the PACE trial front are not faster.
     
    Last edited: Oct 16, 2016
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