Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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We are 'b****ards who don't want to get better'

Discussion in 'Action Alerts and Advocacy' started by Min, Dec 29, 2011.

  1. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    In regards to the quote in #20

    Things arent fitting.. maybe T. Chalder put out two different fatigue scales? or is there some deception going on with what was said when they said in studies report with they "scored 4 or more on the 11-item Chalder Fatigue scale" to participate in the study?

    I just tried to look up the Chalder Fatigue Scale as I wanted to know the exact questions asked, to see just how lax this studies selection of of its participants was, but from the looks of it that fatigue scale hasnt got 11 items but rather 14 .. so rather was it they only had to score 4 or more on a 14 item scale?
  2. biophile

    biophile Places I'd rather be.

    In the full text of Chalder et al 1993 ( they list the original 14 items/questions, perform a [Relative Operating Characteristics] (ROC) analysis and then eliminate 3 items accordingly. Below are the original list of 14 items, with strikeout through the 3 items that were eliminated (items # 5,12,14):

    (Physical symptoms)
    1. Do you have problems with tiredness?
    2. Do you need to rest more?
    3. Do you feel sleepy or drowsy?
    4. Do you have problems starting things?
    [STRIKE]5. Do you start things without difficulty but get weak as you go on?[/STRIKE]
    6. Are you lacking in energy?
    7. Do you have less strength in your muscles?
    8. Do you feel weak?
    (Mental symptoms)
    9. Do you have difficulty concentrating?
    10. Do you have problems thinking clearly?
    11. Do you make slips of the tongue when speaking?
    [STRIKE]12. Do you find it more difficult to find the correct word?[/STRIKE]
    13. How is your memory?
    [STRIKE]14. Have you lost interest in the things you used to do?[/STRIKE]

    However, this is somewhat at odds with the 11-item CFQ on p162 of the complete unpublished PACE protocol ( where one of the eliminated items (#12) apparently replaces one of the remaining questions after the ROC analysis performed in Chalder et al 1993 (item #10: "Do you have problems thinking clearly?"):

    Do you have problems with tiredness?
    Do you need to rest more?
    Do you feel sleepy or drowsy?
    Do you have problems starting things?
    Do you lack energy?
    Do you have less strength in your muscles?
    Do you feel weak?
    Do you have difficulty concentrating?
    Do you make slips of the tongue when speaking?
    Do you find it more difficult to find the correct word?
    How is your memory?

    Don't know what happened there, PubMed does not mention erratum for Chalder et al 1993. Perhaps, as a PI of the PACE Trial, Chalder decided item #12 was better than #10?
    Dolphin likes this.
  3. PhoenixDown

    PhoenixDown Senior Member

    I agree with most of what you say, you made some excellent posts in the Bart's Therapy thread, However: They do not deserve a "get out of jail free" card. They have above all else, a duty as human beings, to question their orders for gross stupidity, carelessness, and irresponsibility. Nobody pointed a gun at their heads. They failed that duty. They failed those patients.
    Lou and Enid like this.
  4. Esther12

    Esther12 Senior Member

    Thanks PhoenixDown.

    They don't escape responsibility, but the more that I've read of what was being claimed about CFS and how to treat it, particularly from the time when I first got ill, the more understanding I've become of those medical staff who have treated CFS patients badly. Being unsurprised, or understanding of something is far from saying that I find it acceptable.
  5. Dolphin

    Dolphin Senior Member

    Yes, I think those involved in trials and, in general, experts who have time to follow the literature and know all the data that don't fit with a lot of the data, are the most responsible for hype and misrepresentation of the illness.
  6. SilverbladeTE

    SilverbladeTE Senior Member

    Somewhere near Glasgow, Scotland
    "Just obeying orders" got folk hanged 70 years ago, but alas, that lesson has not been learned.
    As I keep saying, folk in groups suck cephalopod naughty bits! :p

    Onc eyou implant a suggestion that a "type of person" is cheating, vile, low, debased or whatever, you can eaisly sway opinion.
    Peopel are very wary of being conned, everyone HATES being taken for a fool, made to look stupid in public
    Hence, making the disabled look like "cheaters/con artists" is a great way to dehumanize them without appearing to do so.

    Today's leprosy, that's what it is.

    Sorry to go on about this part of the issue so much, but it is absolutely crucial
    It's classic, pernicious, diabloically evil "psychological warfare", and deadly bloody dangerous.
    The pen that writes a well crafted, malicious lie, is mightier than the sword
  7. Enid

    Enid Senior Member

    Is the likes of Chalder (et al) in their disregard of biology (research/findings) of any use/consequence - clutching straws this lot probably/undoubtedly self interest regardless. Or why play (don't ask me I'm not into psychoanalysis).

    But there is hope - 4 junior Docs at the end of my bed in A & E schooled in "imagined" illness and producing a psychiatrist came eventually to stand with sort of sorry "you know when you are ill". (B..... passing out at the time)

    Physicians heal yourselves. (So as not to misgiude too).
    justinreilly likes this.
  8. biophile

    biophile Places I'd rather be.

    In a previous post (#22) I highlighted the discrepancies between the 11-item Chalder Fatigue Scale/Questionnaire in the original Chalder et al 1993 paper versus the one which appeared in the complete unpublished protocol of the PACE Trial. The Lancet has since published a clarification on the issue so now we know what happened (I don't claim credit for the coincidence):


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