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Personality Features and Personality Disorders in Chronic Fatigue Syndrome: A Populat

Discussion in 'Latest ME/CFS Research' started by V99, Jul 28, 2010.

  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Shiso,

    In the early years of ME, as you are in, it was very hard for me emotionally accept that CDC "CFS" program and NIH have been doing this intentionally to us consistently since the beginning. There is NO doubt the war on patients and science is intentional. The evidence is beyond overwhelming.

    This has been their strategy since day one. Once they misappropriated millions they had to cast us as crazy and lazy so noone will believe us when we point out their crimes. This is what it all boils down to.

    Feel free to PM me if you have any questions about this. I also really think you'd really enjoy Osler's Web (personally, it has helped me more than anything else).
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    A patient advocacy organization sounds like a good idea.

    I wonder if CFSAC has subpoena power to get people down there to explain why this persecution is occurring. I would suspect that most of the CFSAC members wouldn't really want to do this though. Even Klimas is kind of a 'get along' not rock the boat type. I suspect only Jason would want to do this and that's really probably not enough. But maybe they could push it a little and have not just Unger and Mike Miller, but their boss and Anthony Fauci there to answer some real questions.
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Honestly, I'm surprised CDC said we were too introverted as I'm sure they wish we were alot more introverted (and kept our views to ourselves)!

    These persecutor-people are so inventive! I have heard so many different (contradictory) unfounded explanations in the "literature" about psychology in ME. I read in one text on psychosomatic medicine that ME was very similar to somatization disorder, except that the personality type was very narcissitic and Type A; people who couldn't perform up to their own expectations so they blame doctors and insist there's something physically wrong with themselves though there isn't.

    It was funny to me that someone quoted in Osler's Web responded to this type of argument with "I'd like to see the expression on Cher's face when CDC tells her that her 'CFS' was caused by unmet goals and poor coping skills."
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I'm not looking into this at this point, since my priorities now are trying to survive, getting better and getting help for us in general.

    My off the cuff opinion is I doubt any lawyer would really take this on yet since it would be hard work to explain this to a jury and they might not want to believe that the government would persecute us. But someone posted that some lawyers had contacted Dan Peterson when the Lombardi paper was published, so i certainly could be wrong on this.

    I'm reading Betrayal of Trust and the Coming Plague- kind of an Osler's Web of emerging diseases and how CDC, WHO and other public health agencies are not preparing for them. Very interesting, definitely recommend. Anyway, the author, Laurie Garrett, wrote about the Swine flu scare back in 1976. A few hundred people got Guillain Barre (a neurological disease) from the swine flu vaccines and some died. They sued and between settlements and verdicts got i believe about $75M out of the Fed govt.

    This was a case that had more going for it than us since it was very easy to show causation. I think we can show causation, but this is certainly an issue for any case for us. Our other big problem is sovereign immunity; but we may be able to get around it like the Guillaine Barre people did. Anyway, these are just thoughts. My personal feeling is we need political advocacy now to get us help more than we need legal action; but others could certainly disagree.
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Personality Disorders are thought to be part of someone's 'character' so they are thought to usually last a very long time and be very hard to 'treat', so i'm not sure it would matter that much.
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Ha! That would be so refreshing!!
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    CAA response to study?

    Can CAA please write a brief critique of the study and post it to the website and send it to the journal and CDC? Any critique would of course include the most glaring fatal flaw- the invalid Reeves definition of "CFS" upon which the study is based.

    Sorry for posting one after another, just got to reading the thread.
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Guess not.

    Jennie- Any reason for not doing this? I'm talking about a two paragraph or so letter if time is pressed.
  9. Tammie

    Tammie Senior Member

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    First of all, that truly only applies to healthy people - many, many of the questions have been shown to be invalid for people with chronic illnesses.....and second, the DSM-III-R is very outdated - they have already had a Iv and a IV TR and are working on the 5th version rt now....not to mention that the statement above re false postives shows that it is not supposed to be used as the sole assessment
  10. Dolphin

    Dolphin Senior Member

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    Examples would be good for anyone trying to submit a letter (only person I heard of was CBS - don't know whether he has submitted anything, still seeing if he can see a particular questionnaire, decided not to do it, etc).
  11. Esther12

    Esther12 Senior Member

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    I alway get people's user-names mixed up, but I was trying to get the list of questions through a psychology academic I know. No luck unless we fancy coughing up the full commercial rate.

    I bet that there are loads of inappropriate questions hidden away in there, but we can't get at them.
  12. Dolphin

    Dolphin Senior Member

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    Well done for trying. Sometimes if one gets a question or two, if one googles that one can find more or even the whole questionnaire. I've done that and found lots of different questionnaires over the years - people doing projects, theses, or whatever and they leave in the questionnaires. So if we could even get a few questions, we might find a list online.
    But I wasn't thinking of you; CBS was going to try.

    Yes.
  13. Esther12

    Esther12 Senior Member

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    Sorry, I wasn't very clear.

    I could have been in contact with CBS myself. ComebackShane too?

    Cunning idea with google. I don't think we've got anything to get started on though.
  14. Dolphin

    Dolphin Senior Member

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    Although that poster referenced research on version iii, which is interesting, the paper itself used version iv (ref 20) and part of iv-tr (ref 21):

  15. Dolphin

    Dolphin Senior Member

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    Yep

    Starter questions would be useful so if anybody can help with that, it'd be great. One can still get there sometimes if necessary e.g. search around for where they talk about a particular questionnaire; sometimes they give sample questions. Then google these sample questions and then one may find the whole questionnaire. Or would might just find places where one finds a few more sample questions. Some sample questions can help more than others as sometimes a phrase can be used frequently in other contexts.
  16. Esther12

    Esther12 Senior Member

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    I did spend quite a lot of time on google trying to track down the questionnaire last time. Maybe I'll have another go, focusing on student projects etc this time. Last time it always seemed to lead back to being charged a fee for it.
  17. Dolphin

    Dolphin Senior Member

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    Good news: PDQ-4 questionnaire and scoring!

    One person (not sure they want to be named?) has sent me a PM to say they found the PDQ-4.
    Also the scoring (so one can see what one score oneself if one wants).
    This should help people, particularly novices like myself, to get a grip a bit more on the area of personality disorders:

    http://www.cure-international.org/PDQ4Test.html

    http://www.cure-international.org/f/PDQ-4_Questionnaire.pdf (105KB)

    http://www.cure-international.org/f/PDQ_Excel_Self-Scoring_Sheet.xls (23KB)

    As one can see, the files are quite small.
  18. Esther12

    Esther12 Senior Member

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    Excellent work whoever managed this.

    It could well be worth saving a copy, as I don't think that this are meant to be publicly available.
  19. Dolphin

    Dolphin Senior Member

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  20. Dolphin

    Dolphin Senior Member

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    Some questions that possibly might change because of ME/CFS?

    Here are a few that occured to me *might* change because of somebody's ME/CFS - there could be other ones and/or perhaps some of these wouldn't change anybody's answer for that question?
    3. I often get lost in details and lose sight of the “big picture.”- cognitive problems?

    7. Others have complained that I do not keep up with my work or
    commitments.
    - health/disability

    22. I would rather do things by myself than with other people.- can't cope with too much stimulation/don't have enough energy?

    24. I often wonder whether the people I know can really be trusted- invisible illness so they may not see how disabled you are in general or at any one point?

    28. I have many shortcomings.- some might say being disabled leads to shortcomings?

    32. I often wonder who I really am.- disabling illness makes one question

    34. Sex just doesn’t interest me.
    - fatiguing/pain illness with low testosterone etc?

    35. Others consider me moody and “hot tempered.”
    - illness probably doesn't do much for one's moods

    39. I am more sensitive to criticism or rejection than most people.
    - ME/CFS makes one more sensitive?

    40. I find it difficult to start something if I have to do it by myself.- if disabled?

    56. I worry a lot.- disabling illness with unknown prognosis that often leads to a lack of sufficient support

    57. I expect other people to do favors for me even though I do not usually do favors for them.
    - being disabled can cause that

    65. When alone, I feel helpless and unable to care for myself.
    - if very disabled perhaps

    68. Some people think that I take advantage of others.- if disabled with an invisible illness

    69. I feel that my life is dull and meaningless.- perhaps some people with a disabling illness

    74. By looking at me, people might think that I’m pretty odd, eccentric
    or weird.

    - sometimes people can have things to avoid stimulation e.g. dark glasses?

    77. I complain a lot about my hardships.- maybe people with a disabling, misunderstood illness?

    79. Some people are jealous of me.- ??because don't work??

    81. I see myself as thrifty, but others see me as being cheap.
    - because of a lack of money??

    88. I am terrified of being left to care for myself.- if very disabled?

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