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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. Tammie

    Tammie Senior Member

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    Esther, very nice job picking out the specific questions and which person. disorders they correspond to......I found your comment re the last one about things being held against us comical (& all too true)....I agree, also, that there are actually probably quite a few more that could easily be skewed because of illness

    as far as the letter and co-signing, I would normally sort of feel like it's not rt to sign my name to something I didn't write myself, but in this case, if you get soemthign written and I agree with it, I would be happy to co-sign (I have an MA in community cousneling, so though it's not considered quite as good (by the Reeves of this world) as a PhD or PsyD,it still maybe at least somewhat helpful - it is definitelya grad degree in the field anyway)......I would write my own letter, but I have been in the middle of a horrid crash and am just not up to it at all
     
  2. Dolphin

    Dolphin Senior Member

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    Yes, I'd say that would be helpful.
    And I'm sure you will end up giving lots of useful input by the final version. ;)

    I think one thing that will help maybe is having at least a few references from somewhere. Just a long letter with only the initial article reference and maybe one reference might look a little amateurish. Get a few more if possible. I might be able to help if necessary. Same point probably applies of course if somebody had a PhD, PsyD, MD or whatever. Probably stating the obvious. At the same time, it's not necessarily a competition to have as many references as possible. My guess, based on when I looked through old letters to the journal that I could access and the fact journals generally don't want letters that take up too much space, is that won't want more than 15. 5-10 possibly optimum. All my "tight" letters have been accepted (excluding any rapid responses) (I sent a "rant" type one that wasn't - think it only had one reference): a letter doesn't have to be perfect to get in to journals.
     
  3. Dolphin

    Dolphin Senior Member

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    Personality Profile of Patients with CFS (Le Bon et al., 2007)

    Not sure if this has been mentioned or not:

     
  4. muffin

    muffin Senior Member

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    JustinReilly made the smartest comment

    "My personal feeling is we need political advocacy now to get us help more than we need legal action; but others could certainly disagree."

    I agree and that is exactly what the ME/CFS Worldwide Patient Alliance is trying to do. We are trying to be that political movement. First we hit the Washington Post with a striking 1/2 page AD. Next comes other newspapers, other media, down in the deep roots grass roots actions, and then we ensure we hit worldwide.

    MANY of us are working to turn this media campaign into a full-fledged political movement, much like the HIV/AIDS people did. And many billions later, the HIV/AIDS people did get their medications, vaccines, attention and validation. And so will we if you all join, donate, help and get YOUR voice out there.

    So once again...http://www.causes.com/causes/511536?m=f042604e
     
  5. Dolphin

    Dolphin Senior Member

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    Personality and social attitudes in CFS (Wood & Wessely, 1999)

    Another previous study:

     
  6. Esther12

    Esther12 Senior Member

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    Thanks Dolphin. There's also a paper comparin to MS, isn't there?

    I was thinking of talking aboutthe damage that can be caused by presenting data in a way which could create a misleading and exagerated perception of the role psychological factors play in CFS - there's this paper: http://www.bmj.com/cgi/content/full...s&searchid=1&FIRSTINDEX=10&resourcetype=HWCIT

    I remember a paper being posted here which you said was interesting - about doctors who believed psychological treatments were the most effective for CFS also tending to have more negative views of their CFS patients and see them as less deserving of help. I have looked for it - but apparently not hard enough yet. I don't suppose you happen to know what I'm talking about and have a note of it?

    I've not progressed at all on this so far, and I'm not expecting to spend much time on it over the next ten days, but if I manage to get sources together in that time it shouldn't take too long to then write something. Ta.
     
  7. Dolphin

    Dolphin Senior Member

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    Could be this be what you are thinking of:
    http://www.forums.aboutmecfs.org/sh...ent-on-mental-health-practitioners-attributns ?
     
  8. Esther12

    Esther12 Senior Member

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    I thought that I remembered one that someone else had posted and you then commented on. I also thought it was more recent...

    but I don't really trust my memory on these things. I've spent lots of time hunting for things I remembered reading on the internet only to eventually conclude it was probably just a mental mirage. Thanks for that - it's close enough to make me think that it could well have inspired my creation of the memory of another, more useful study.

    I've just had another look, and cannot find anything else. Thanks.
     
  9. Dolphin

    Dolphin Senior Member

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    Perhaps there is something else. Memory isn't the best with the ME. Also probably even without the ME, I doubt I would remember everything I read - it's not like studying where one might consciously revise stuff.

    Articles of the sort you are looking for may be out for. Sounds like a good angle.
     
  10. Dolphin

    Dolphin Senior Member

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    This review:
    Clin Psychol Rev. 2007 Dec;27(8):885-903. Epub 2007 Jan 27.
    Personality and chronic fatigue syndrome: methodological and conceptual issues.
    van Geelen SM, Sinnema G, Hermans HJ, Kuis W.
    gives the basic data up to then. Perhaps I shouldn't have bothered posting the Wood & Wessely one I found when reading other info (the Le Bon didn't show up - JoCFS articles are often missed).

    The Van Geelen review is at: http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0703C&L=CO-CURE&P=R3290&I=-3

    It can look like there are more personality problems until one starts looking at the comparisons with MS, RA, etc (see tables).
     
  11. Esther12

    Esther12 Senior Member

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    Thanks Dolphin.

    And thanks Tammie - I'll try to get a draft done in a couple of weeks (I know how slow that sounds) and then we can think about who would be best, and want, to sign off on it.
     
  12. Dolphin

    Dolphin Senior Member

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    Forgot to say. Here's one from the Van Geelen paper:
     
  13. Tammie

    Tammie Senior Member

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    doesn't sound slow to me at all.....I was just on the ph a couple of days ago with my father trying to explain to him why I still have not managed to do something that I had tlaked to him about a month ago....anything extra takes me forever to get done these days
     
  14. Esther12

    Esther12 Senior Member

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    I was just chatting to a psychology prof who has edited journals before (and still does I think), and they agreed with my criticisms of the paper, but also said that it's not unsual for researchers to take no account of the impact their work can have upon the groups they are studying. There's a sense that such considerations should be made with race, and to a lesser degree sexuality and gender, but that other groups are left to it, with a pretence that these sorts of trials produce reliable and objective data overcoming any possible objection.

    In the case of CFS the impact may be especially damaging but it should be recognised that this is widely seen as an acceptable approach.

    They also agreed that the presentation of sources in the first paragraph of the final page was misleading to the point of being virtually nonsensical - but again pointed out that the misleading or confused use of citations is not that unusual and not seen as terribly important either.

    The overall response seemed to be: "It's not a very good paper. Most papers aren't very good though, and not much thought goes into how this can harm patients. I agree that's bad, but it's not in the interest of those in authority to change things. It's not a problem limited to CFS."

    Academia's run by academics, for academics.

    I'll still try to work on a letter, but I think I'll have to tone it down a bit.
     
  15. oceanblue

    oceanblue Senior Member

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    I'm not surprised to hear that. A pal of mine who is a genetics Professor (and has regularly published in top journals like Nature) is scathing about most clinical research (including most ME research), which often appears to be about advancing the careers of clinicians rather than, er, finding stuff out. The big problem is that the current set up suits both clinicians and journals.

    I think some clinical research e.g. big international or multi-centre studies with thousands of patients are the real deal but a lot of the minor stuff is a joke (unless you are in the affected and denigrated patient group).
     
  16. Dolphin

    Dolphin Senior Member

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    Yes, I can't remember where I said this before but I think it's down to us to write letters and the like. Academics are unlike to do it, esp. in the ME/CFS area - there's plenty of rubbish that was published that was challenged by nobody. Everything bad doesn't have to be challenged, I hope, to have an effect i.e. "academics" get the message that they could be challenged.
     
  17. Enid

    Enid Senior Member

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    There are no Personality Disorders (what's that) and anyone who tries to tell that is ignorant.
     
  18. Dolphin

    Dolphin Senior Member

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    CBS has said on another thread that he won't be replying to this. He had hoped to but in the end it took too much out of him and he gave up. So it's a free run for anybody else.
     
  19. Esther12

    Esther12 Senior Member

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    I'm feeling slightly pathetic over my slow progress here. I've had a few other things to deal with recently (as we always do) - but it's mainly laziness. Maybe combined with a slight despondency about making any difference.

    I'll still try to get something done, even if it's just as an intellectual exercise for myself.

    I need to be more OCD about it. Maybe perfectionist all or nothing traits are combining with a depressive wold-view or problems with low self-esteem? Either way my limited work rate certainly shouldn't be stigmatised!
     
  20. CFIDScandy

    CFIDScandy

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    I just watched the video link you posted, then shared my opinion on Facebook. Had too much trouble attempting to send it to my friends- Big Brother watching? The video is a perfect watch for Halloween- rarely have I seen anything REAL that was any more frightening. To think CFS/ME has been noted, but not identified, since at least the 1930's? It may have been earlier, but my short-term memory problems from Brain Fog ---Oh, well, I am sure you can understand. Both my husband and daughter are physicians. My husband has yet to read anything about either CFS or Fibromyalgia. My Psychiatrist knows I've been diagnosed, but he was taught the "depression" hypothesis as fact in Medical School. My daughter doesn't understand how debilitating the fatigue is, so still tells me I'm lazy. It's useless to argue in these circumstances. I'm on Valtrex for (non-acute) Epstein-Barr titers being the highest (all three 8>, which means they don't even TEST higher than 8; >1 considered positive) of any patient my Immunologist has seen in 25 years of practice. I also was his first patient to have zero antibodies to every Strep. Pneumo strain for which they test. As middle of 5 children, and a former Pediatric Oncology R.N, I found that extremely odd. Looking back, it became evident to both of us I have an unnamed Immune problem. Mumps in Nursing School; no antibodies to Rubella with the pregnancy of my first child, even though I had solid antibodies present in my pre-pregnancy work up the year prior. Chronic Sinusitis for decades. Finally the rarest and most deadly form of Melanoma, resulting in the amputation of my L great toe. ALL IMMUNE PROBLEMS.
    Some very interesting reading about possible treatments for the Strep. Pneumo problems concern Biofilms. I don't have a link, but they are polysaccharide coatings on Bacteria, much like a Kevlar shield. The antibiotics cannot penetrate the layer without first breaking down this barrier. Bacteria continue to multiply inside the Biofilms. I may get a "new " sinus infection, but it can never be truly eradicated until the Biofilms are penetrated and destroyed. Meanwhile the ever-replicating bacteria keep my Immune system revved up, possibly not allowing other invaders to be properly attacked.
     

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