Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
Never heard of Invisible Illness Awareness Week? You're not alone. Jody Smith sheds a little light to make it more visible
Discuss the article on the Forums.

Charles Raison (part of CDC CFS "team") on PACE Trial

Discussion in 'General ME/CFS News' started by Dolphin, Feb 24, 2011.

  1. Dolphin

    Dolphin Senior Member

    This came up on the PACE Trial thread. As I didn't want the discussion to get side-tracked, I thought I'd set up another discussion.

    One can also post comments on the website which might influence him (if that's what you want to do):

  2. CBS

    CBS Senior Member

    Coming from a guy in my position, Raison's position is self-serving, short-sighted and dangerous self-stimulation:

    Patients did not get "much better" on CFS and GET. Whoever they were (they sure don't look like ME patients to me), they had marginal improvement but the p values were supposedly impressive because of the size of the (depressed?) sample, not because of the size of the treatment effect.

    Go ahead, push yourself. Sometimes you need to do something besides sitting around waiting for the researchers and advocacy groups to do something meaningful. A decade from now when you can't think straight EVER, you can thank Raison, the CDC and everyone else who thought they knew so much about this disease.

    I've come to the conclusion that the real danger in ME is that it develops so slowly (yet relentlessly) that small temporary improvements have shaped everyone's perspectives but few, if any, of these "scientists" will follow someone who took their advice over the course of decades. My guess is that the PACE trial participants who weren't simply depressed will be spending their last decade drooling all over themselves, being spoon fed and having their diapers changed and their assess wiped by that cute nurse who's name they'll never be able to remember.
  3. SOC

    SOC Senior Member

    I am: intelligent, well-educated, perseverant (even stubborn), and tough-minded. I am not: lazy, complaining, whining, and weak-minded

    I WANT to be out and about, working, participating in a world outside my house.

    I volunteer to quit my (supposedly unnecessary) Valcyte right now and enter an intense exercise and CBT research study under the supervision of any biopsychosocial researcher who believes ME/CFS is only about poor coping AS LONG AS that researcher will
    1) do regular routine tests of measures of health such as CBC, cardiac testing, etc
    2) do regular tests of certain tests ME/CFS medical specialists have found to be abnormal in PWCs -- herpesvirus and other infections, immune function tests, etc
    3) use established OBJECTIVE measures of functioning -- both physical and cognitive -- and take the data frequently to account for PEM
    4) do beginning and end testing of other measures of possible physical abnormalities, such as MRI, to detect permanent/long-term effects of the "treatment"
    5) have statistical analysis of the data done by an outside, objective statistician
    6) publish EXACTLY AND COMPLETELY the data taken in the study (including the health data) and the statistical analysis of that data

    If ME/CFS is a false illness belief, then I should be able to achieve 100% functionality if I dedicate myself to their treatment plan without any other treatments. I don't want to hear anything about achieving the walking pace of a sickly 80yo. If I'm not really sick, then I should be able to achieve, by objective measures, the physical functioning of a healthy person my age.

    I understand the risks involved, and I'm willing to take them to put an end to this false illness belief nonsense so that the world can get on with real research.

    How about it, Dr Raison?

    [off to burn my false illness belief corset]
  4. urbantravels

    urbantravels disjecta membra

    Los Angeles, CA
    I wrote a long screed in the comments to that article, but it apparently got eaten by the comments system and was never seen again. I HATE when that happens.

    I may try again. One of these days, I will actually remember to compose longer comments in my own word processor and save them before trying to post them. I've gotten spoiled by the writing setup I have for my own projects where my writing software (Scrivener) automatically backs up to Dropbox on a continuous basis, so I never have to think about saving stuff.
  5. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    To be fair, he did say this:
    To bad he never read the protocol and noticed the changing of the goalposts.

See more popular forum discussions.

Share This Page