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Kinesiophobia, catastrophizing and anticipated symptoms before stair climbing

Discussion in 'Latest ME/CFS Research' started by Firestormm, Feb 14, 2012.

  1. CJB

    CJB Senior Member

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    I'm trying to think of an elegant way of saying what a load of sh*t. It's not fear of stairs, it's conditioned terror, and the harm is real. Stairs may as well be a wall for me. Personally don't do 'em. Since they set out to prove it's all in our heads, they must have heard a lot of patients talk about stairs. It's perverse. God bless the Pacific Fatigue Lab.
    Enid and biophile like this.
  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    Have a link?

    GG
  3. Dolphin

    Dolphin Senior Member

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  4. Hope123

    Hope123 Senior Member

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    My suggestion would be that people, regardless of whether you are a professional or not, send a letter into a journal if they have the energy. Letters have been published in medical journals by non-professionals, including a letter to the Lancet about PACE from a layperson with ME/CFS living in Japan. Ideally, letters are judged by the astuteness of the points made and supporting references rather than who is writing it. As patients, you will give a point of view different from professionals and make them consider things they might not have considered. This is why the best professionals continue to listen and learn from their patients. Even if the letter is not published, reviewers have to look through them and it might make them re-consider things.
    Dolphin likes this.
  5. Dolphin

    Dolphin Senior Member

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    And outside of the PACE Trial, there are only a handful of letters published each year, I believe because "nobody" is writing in (rather lots of letters being written but not being published). Most "bad"/questionable paper/claims never get challenged in print in the ME/CFS field. I think this can encourage more dubious claims as authors think they can get away with them.

    There are people around who may be willing to help with wording if people try their hand at writing a letter.
  6. Hope123

    Hope123 Senior Member

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    Also, a principle I learned during my education and work was that it matters WHO you direct your comments or complaints to. It's very well to vent to people who already understand your points and agree with you but sometimes, more can be accomplished by educating those who are open-minded but not knowledgeable OR challenging those with opposing views in their own arena. Not saying that this will be easy or necessarily pleasant but all stripes of people have been known to change their minds.
    WillowJ and Dolphin like this.
  7. Doogle

    Doogle Senior Member

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