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"Unraveling the role of perfectionism in chronic fatigue syndrome"

Discussion in 'Latest ME/CFS Research' started by CBS, Oct 22, 2010.

  1. CBS

    CBS Senior Member

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    I honestly could not find an appropriate section on the forums in which to post this article. I seriously questioned whether or not it has any place on these forums. I have posted it because of the potential damage it will do and the need to challenge the article's premise and draw attention to the real harm it will do.

    Kempke, S., et al., Unraveling the role of perfectionism in chronic fatigue syndrome: Is there a distinction between adaptive and maladaptive perfectionism?, Psychiatry Res. (2010), doi:10.1016/j.psychres.2010.09.016

    The authors claim to be studying and writing about CFS and if the article were not so horrifying in its potential to do serious harm, I would have thought it to be a satirical piece put together by some of the more clever amongst us. I doubt that collectively we could have come up with a more perfect piece of satire.

    The authors do an absolutely flawless job of capturing the danger of the diagnostic/cohort issues perpetuated by the CDC as they confound depression with CFS. They then gleefully run headlong down the CBT/GET road with recommendations on how one may refine CBT (apparently we need to lower our standards and expectations - I'd suggest we start by lowering our expectations of the psychiatric community even further - as if that was possible).

    Please understand if I don't participate much in the discussion of this article. After having slogged my way through it, I'm feeling like I need to go take a shower.

    Someone needs to respond to this. It is published in the journal Psychiatry Research. People's lives will be impacted.

    Jennie, I know this question is likely to ignite another CAA flare up but I have to ask, what is the CAA's policy on responding to articles like this? If the CAA has no policy, does the IACFS/ME have a policy?

    I tried to respond to the CDC's article on CFS and personality this past summer and simply I couldn't sustain the effort/went into a prolonged crash. I have a pdf copy of this entire article if anyone who is interested.
     
  2. shannah

    shannah Senior Member

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    I agree CBS that it needs challenged by one of our more clear thinking and articlulate members here. Hopefully someone can take it on.

    This drivel really makes me feel ill. Imagine people with their high priced salaries getting paid to spew out such rubbish. (I see it's from Belgium and not Britain.)
     
  3. Snow Leopard

    Snow Leopard Senior Member

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    Can anyone explain how this SEM stuff is cooked up? The questionnaires given were Checklist Individual Strength-20, Beck Depression Inventory, Frost Multidimensional Perfectionism Scale. Note that they had no healthy or depressed controls to which a comparison could be made. I thought the point was to demonstrate a statistically significant difference between groups.

    One of the primary problems with this sort of research is the patient selection biases, even restrictive cohorts won't fully control for this. You really need to identify factors such as depression and perfectionism BEFORE the onset of the disease to demonstrate whether it has etiological consequences.

    How does this work exactly? It seems more like cherry picking to me since the direct path was not significant.
     
  4. franktwisk

    franktwisk

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    Could someone supply me with the full-text version of this study?

    We would like to submit a comment to Psychiatry Research.

    Thanks in advance.

    Frank
     
  5. jace

    jace Off the fence

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  6. Snow Leopard

    Snow Leopard Senior Member

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    Hi Frank, please Private-Message me your preferred email address so I can send a PDF. A google search reveals one at hetnet.nl, but I'm not sure if that is current.
     
  7. Dolphin

    Dolphin Senior Member

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    CIS-20 questionnaire

    If one really wants to get deep into these studies, I think it helps to have the questions.

    The 20 questions are on page 90 of the file at:
    http://arno.unimaas.nl/show.cgi?fid=5389

    Here's a description from another source:
    http://www.biomedcentral.com/1471-2474/11/142
     
  8. jspotila

    jspotila Senior Member

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    Hi Shane,

    The Board has not set any policy on the Association's role in responding to research papers like this one. That decision is delegated to the staff. In turn, the staff must assess whether to publicly respond to such articles in light of the many other demands on time and resources. The Association's strategy is "To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment." So the staff must constantly ask what activities best operationalize the strategy.

    I think everyone, Board and staff, would agree that this paper richly deserves criticism, and it is certainly not the kind of research we think should be funded. The question for the staff is whether the time and effort required to draft and submit a response to the journal should take priority over other tasks, such as designing the next phase of our own research program or working on the two XMRV task forces or advocating for positive action at NIH (etc etc etc). The staff must also consider where our expertise lies and what we can do best. On the issue of responding to these sorts of papers, the Board is comfortable delegating that choice to the staff.

    I think it would be fantastic, and probably more successful, for the IACFS/ME to take this issue on. Their membership has substantial expertise and qualifications for this type of work. I think it likely that Psychiatry Research might consider a letter from the IACFS/ME as having more gravitas since that's the association of researchers and clinicians in our field.

    To my reading, the article is sloppy and surprisingly divorced from what is really going on in CFS research these days. As I said, the Board believes the decision of whether and how to respond to such articles is best made by the staff, and I've sent them a copy of the article.
     
  9. Dolphin

    Dolphin Senior Member

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    Beck Depression Inventory

    Beck Depression Inventory
    They didn't use the ones in italics for this study.

     
  10. Dolphin

    Dolphin Senior Member

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    Frost Multidimensional Perfectionism Scale (MPS-F)

    From paper:

    https://kb.osu.edu/dspace/bitstream/1811/32206/1/FinalThesis.pdf

    Frost Multidimensional Perfectionism Scale (MPS-F)
     
  11. gracenote

    gracenote All shall be well . . .

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    Not helpful enough.
     
  12. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    A little off track, but I don't know how it ever came to be that ME/CFS patients were dubbed "Type A Pefectionists".......? Does it go all the way back to the Tahoe outbreak, because it was in a wealthy area? It is complete rubbish that all, many, or most ME/CFS patients are Type A personalities, or perfectionists, or highly motivated, etc......It doesn't discriminate. Totally chill laid back people get CFS too :) And what about kids who get this disease?
     
  13. Snow Leopard

    Snow Leopard Senior Member

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    That is an interesting question. I'm not sure what the history is, but one of the reasons why medical practitioners may get that impression is because people with "Type A" traits are simply more likely to be visible and demanding answers about their condition. Of course that is not universally true, as many of us on this forum are not typical type A personalities.
    Such stereotypes are an excellent way for an incompetent investigator to shift attention from their own lack of ability and towards blaming the patient.
     
  14. Berthe

    Berthe Senior Member

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    One of the authors is Boudewijn van Houdenhove, the Wessely from Belgium. He was my physician for ten years. Way to long! He is just retired, but now professor emeritus. Recently he told on the radio that although he was rertired, he would continue with his work in CFS. I know this professor very well. I actually wrote one column in my blog about the devestating effect of CBT and GET on me.
    At my very first appointment he made clear to me that because of my perfectionism I was in this mess. I did it to myself. The thing with perfectionism is that you can never live up to your own standards. You are always dissapointing yourself. Now I guess that in front of this professor every patint looked perfectionistic. We weren't mentally ill. Hair groomed, nice make-up, well dressed and despite the symptoms willing to overcome the disease. In comparison with his other psychiatric patints we all looked perfectionistic.

    Love,
    Berthe

    http://www.onwilliglichaam.blogspot.com
     
  15. Dolphin

    Dolphin Senior Member

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    Thanks for the background, Berthe.

    I hope they start doing spot checks at home on me and I might pass!
     
  16. alice1

    alice1 Senior Member

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    Personally,if I weren't a type A I don't know if I would of survived all these years.
     
  17. urbantravels

    urbantravels disjecta membra

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    I've long believed that you have to have a pretty high baseline level of ambition/drive/whatever to keep from completely disappearing after you contract this disease. I suspect a lot of people who have it just slide out of sight - into homelessness, or living on a relative's couch, or drug addiction, or some other barely-there level of existence. Or, of course, suicide.

    I am a HUGE perfectionist and admit it freely. I no more think this is to blame for my illness than I think it was to blame the time I broke my ankle, or any of the times I got the flu. I struggled with my perfectionism when I was healthy and I have a whole different set of problems with it now that I'm sick. It definitely heightens, in some ways, the anguish of being sick, disabled and in pain.

    I have to struggle against it in order to better manage my disease - I have to be willing to let things slide, let tasks remain unfinished if they're not essential, take extra time to do things, be willing to break my promises to others sometimes, etc. I certainly think perfectionism might be a contributing factor when people have trouble pacing, or a contributing factor to situational depression because a terribly sick person can't begin to measure up to her own exacting standards.

    I'm sure perfectionism makes it hard for people to live with other chronic illnesses and disabilities, too. But I'm pretty sure perfectionism doesn't get *blamed* for people being injured, or falling ill with genetic diseases or autoimmune diseases. Or, for that matter, for their failure to recover.
     
  18. Wayne

    Wayne Senior Member

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    Hi Berthe,

    Thanks for sharing your experience with this character. All I can say is, "bizarre"!

    This reminds me of an account that was shared by one of the members here, [Rrrr - Rivka] if I remember correctly. She related how Jacob Teitelbaum (the guy that claims to understand ME/CFS) said some very similar things to her after only meeting her on the spot at a conference. You just have to wonder where the arrogance comes from that would lead to this type of behavior.

    Thanks CBS for posting about this. It's good to keep at least somewhat aware of what continues to transpire "out there" that has the potential to affect us all.

    Wayne
     
  19. jspotila

    jspotila Senior Member

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    This is all very well said, urbantravels! Where are the studies telling us the role of perfectionism in MS/TB/AIDS/insert disease here? Oh, right. :eek:
     
  20. Dolphin

    Dolphin Senior Member

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    (saying a similar sort of thing) They don't tend to start talking about such factors if they have good treatments. As Orla has pointed out to me, one never hear them talking about such psychological factors for anemia/anaemia for example.
     

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