Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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New study finds factor that dictates level of pain and fatigue in ME.........*******!!!!!!!

Discussion in 'Latest ME/CFS Research' started by Countrygirl, Sep 5, 2012.

  1. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    On stigma, there is a difference between stigma toward specific mental problems, and ME in particular, in the community and by doctors, and a stigma issue from patients who fear being branded as having a mental disorder. I see no evidence of the latter. We just want answers. They cannot provide. That is our issue.
    SilverbladeTE and Valentijn like this.
  2. SOC

    SOC Senior Member

    Self-criticism? Aren't most of those reactions fairly normal (and even rational) for people who have gone from active and professionally successful to seriously disabled, unable to work, and dependent on others?

    Well, duh! :rolleyes: I would like not to be disabled, unable to work or care for my home. Who wouldn't? I don't sit around making myself miserable about it, but I'd be a fool not to want my life to be different than it is now.

    However, if we're just talking about psychological "how I am now", my personality and temperament are, like Mary Poppins', practically perfect in every way. :angel: ;)

    Well, since my poor hubby has to work full-time, do all the errands and shopping, and a lot of the housework and yardwork.... Sure, I feel guilty about that. Maybe not often, but I'd be pretty selfish if I didn't consider the impact my illness has on his life. I don't beat myself up over it, but I'm aware of it.

    Okay, not so much with this one. I don't swing to extremes like that. I do sometimes feel useless, because well, sometimes I am. Bedbound with severe cognitive dysfunction doesn't come under the heading of "useful" for most people, I imagine.

    Alright, maybe not often, but I'm aware my family has been disappointed because of things that couldn't or didn't happen because of my illness. Holidays are very low-key. Vacations don't happen. I can't help with most chores. Parties are nonexistent.

    If I were being very careful with my answer (And how many people are with these kinds of questionnaires?) I would think that no, I have not disappointed others, but we are all often disappointed by the limitations of my illness.

    Hmmm..... well, it's not my standard (and certainly not my ideal) to live in a dirty, cluttered house, or to have my yardwork only minimally done. It's not my "standard" to go too long between hairdresser or dentist appointments. But that's the way I currently live due to the limitations of my illness. Is it my ideal to be both physically and financially dependent on others? Not at all! But I don't blame myself for not living up to my standards or ideals. I don't control what this illness has done to my life and I don't hold myself accountable for it.

    IMO, psych questionnaires are sloppy, and manipulative, and generally fit for the cat box. :p
    L'engle, peggy-sue, Valentijn and 2 others like this.
  3. Tom Kindlon

    Tom Kindlon Senior Member

    Following the discussion here, I wanted to put a comment in a place next to the paper, so posted this comment on PubMed Commons:

    Unfortunately only people with entries in PubMed can post on PubMed Commons.
    Valentijn, Esther12 and SOC like this.
  4. Dolphin

    Dolphin Senior Member

    A lot of the discussion section in this paper is annoying. There is no sign of questioning the suitability of the questionnaire for CFS.
    peggy-sue and Valentijn like this.

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