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CDC:Coping Styles in Chronic Fatigue Syndrome: Findings from a Population-Based Study

Discussion in 'Latest ME/CFS Research' started by Dolphin, Feb 4, 2012.

  1. Mula

    Mula Senior Member

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    What allowed them to conclude that those in bold were associated with CFS?
  2. Esther12

    Esther12 Senior Member

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    They got their CFS sample to fill in the questionnaire, and compared that to results from healthy controls.

  3. WillowJ

    WillowJ Senior Member

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    I would think that those bold items are not necessarily maladaptive, depending on circumstances.

    Confrontive coping, for instance, is very necessary in our particular situation This can be maladaptive, of course, but can also be useful - for crying out loud if most everyone in your life is trying to get you to do something that you well know is detrimental (exercise, perhaps?), then this is healthy!

    There is nothing wrong with self-controlling unless it's excessive (you have no one to talk to at all, or don't admit when things bother you even to yourself and this carries on over time). Still, it our bad social situation where we tend to be ostracised, criticised, and cast off by family can exacerbate this and some of us *don't* have anybody to talk to. Particularly those the psych school got to first and told not to join a support group or reach out on the internet!

    I don't know where they get off thinking 'accepting responsibility' is madadaptive. Clearly they want to have it both ways: we did this to ourselves by allowing ourselves to freak out and get deconditioned by our ridiculous worry over normal symptoms, but we aren't supposed to lecture ourselves? This is the one instance I think we probably shouldn't be using. Yes, it's too easy to overdo: life happens and we don't get to pace. Also disease has happened and we don't get to be the responsible, social people we used to be. But neither of those should result in lecturing ourselves. All other reasons for lecturing ourselves are probably a result of maladaptive advice from these very medical professionals & their good friends and society in general who has been informed by them!

    Escape-avoidance - I really don't know what's left to us. In a way we're all hoping for a miracle. Sure, we can make plans, but what we have to work with is not so much. Most of what we need depends on others (social support, doctors, and so forth) and even if we get all that, it's going to make us somewhat more functional but not necessarily all better. So I think it's pretty clear that this is being rational, not dodging reality. Clearly that question was written for contexts other than people with chronic uncurable diseases!

    ETA: there might be valid non-disease-related reasons to lecture ourselves/accept responsibility, of course. It's just that the disease and circumstances surrounding it are not a valid cause of self-blame.
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  4. Snow Leopard

    Snow Leopard Senior Member

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    Agreed, the conclusions are not valid as they stand. A chronically diseased control group with a matched level of disability would have revealed the problems in analysis, but unfortunately these authors were content with a more shoddy methodology.
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  5. Snow Leopard

    Snow Leopard Senior Member

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    Further, this questionnaire has been used in other groups and similar differences were found:

    http://www.ncbi.nlm.nih.gov/pubmed/7937172

    Abstract

    The purpose of this study was to examine the construct validity of the Ways of Coping Questionnaire in a clinical population. The questionnaire, designed to measure coping behaviors in a community-residing well population, contained eight empirically constructed factors. Confirmatory factor analysis with LISREL was used to validate this original eight-factor model with 655 community-residing adults with multiple sclerosis or a spinal cord injury. The hypothesized model was not a good fit to the data. Subsequent analyses, using both exploratory and confirmatory factor analysis procedures, identified three different coping factors: Cognitive Reframing, Emotional Respite, and Direct Assistance. These factors appeared to have greater applicability to people with chronic conditions. The kinds of coping behaviors used to manage stressful situations by individuals who are well may be quite different from those used by community-residing populations with long-term chronic conditions.
  6. biophile

    biophile Places I'd rather be.

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    We are nearly 25 years in from the CDC definition of CFS in 1988. The fact that sloppy papers are still streaming from the CDC are concerning and suggest systemic incompetence or even a prolonged intent to promote the psychological problems of CFS patients.

    Due to their work on CFS, my opinion of the CDC has been tainted to the point where I cannot watch a movie like "Contagion" without a part of me cringing inside at the idea of the CDC being the first line of defense in such a situation. Obviously there is a difference between a serious CDC effort while people are dying, vs something poorly funded that they never cared about and even made fun of ie CFS, but still.
  7. Dolphin

    Dolphin Senior Member

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  8. Dolphin

    Dolphin Senior Member

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  9. Dolphin

    Dolphin Senior Member

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    Seems plausible:

  10. Esther12

    Esther12 Senior Member

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    Ta SL. Does anyone know if they mentioned escape/avoidance in the full paper?

    Thanks for the questionnaire Dolphin.
  11. Snow Leopard

    Snow Leopard Senior Member

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    I don't have access to the full text, sorry.

    I also saw this paper which questions the 'coping models' models used:
    http://psycnet.apa.org/journals/pas/5/3/361/
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  12. Esther12

    Esther12 Senior Member

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    I was being bugged by this last night.

    Patients responses to CFS is often affect by the psychosocial quackery which encourages them to believe that they have control over their symptoms and recover by managing their activity and cognitions. If those beliefs are not accurate reflections of reality, then it will lead to abnormal cognitions elsewhere, and also promote prejudice and stigmatisation from other sections of society.

    58: That seems a sensible desire, particularly if one is being encouraged to believe that this is a plausible outcome.
    11: Why not?
    59: Positive thinking? Focusing on recovery?
    33: Tried to make oneself feel better? Oh-oh (and don't CFS patients tend to drink, smoke and eat unhealthily less than is normal? Since I've fallen ill, I know that I've put much more effort in to trying to make myself feel better by adopting a healthy lifestyle).
    40: Socialising is really tiring, but I prioritised it for the first 5 years of being ill... it was made more difficult by the prejudices which surround CFS, and which I had helped promote through my own trust in the claims of quacks early in my illness.
    50: What had happened? What is it CFS patients are meant to be coming to terms with? That they're deconditioned, but this can be reversed? That they have an unreasonable fear of exercise which they can change? Or that they are profoundly disabled and unlikely to recover without there being some future medical breakthrough? Refused to believe that it had happened, or were 'managed' in to believing that it had not?
    47: Given the number of quacks making money from CFS, there are plenty of people to take it out on. It pr5bably would be worth trying to account for the level of quackery which surrounds a particular condition, in order to try to understand whether the greater levels of anger and resentment from those diagnosed with CFS are reasonable or not.
    16: Slept more than normal? With Chronic Fatigue Syndrome? How perfectionist.


    Ta SL. A lot of the questionnaires used in psychiatry seem pretty dodgy to me, and it's weird how trusted they often seem to be. Whenever I look at an actual questionnaire, the way in which results from it are used look dodgy.
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  13. Dolphin

    Dolphin Senior Member

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    It could be useful at some stage. However, money is generally tight in the ME/CFS field so think it would be difficult to do with the first study or two as it might half/similar the sample size of ME/CFS patients.

    Also, one would want to be pretty sure the controls don't have ME/CFS, either along with or on top of any other condition, or it would defeat the purpose.
  14. Dolphin

    Dolphin Senior Member

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    You mentioned Wichita more than once. This was the Georgia cohort - prevalence 2.54%.
  15. Dolphin

    Dolphin Senior Member

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    The PhD Thesis:
    "Coping with Chronic Fatigue Syndrome: Sufferers and their Carers"
    Susanne Ax (1998)
    Birkbeck College, University of London.
    also used this questionnaire.

    I don't have the time/interest to look through it now to compare and contrast.
    It can be downloaded for free from: http://ethos.bl.uk/OrderDetails.do?did=17&uin=uk.bl.ethos.299935


    Not sure how relevant the following is but came across this piece summary the above PhD (in Brocki's PhD)

    Ax also published some of the results in:
    Ax, Susanne(1998)
    'Coping Differences Between Chronic Fatigue Syndrome Sufferers and Their Carers',
    Journal Of Chronic Fatigue Syndrome,5:2,27 — 62

    ABSTRACT.


  16. Esther12

    Esther12 Senior Member

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    Ta D. Edited. Not sure what I was thinking - I can't really remember this paper now. Must have got my wires crossed though.
  17. Dolphin

    Dolphin Senior Member

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    Another PhD that used it, for what it's worth. Not sure where I found it but I didn't pay for it.


  18. Dolphin

    Dolphin Senior Member

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    Another study to use the questionnaire is:
    Again they made their own factors.
  19. Dolphin

    Dolphin Senior Member

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    Another study to use it:
    The numbers look quite different:


  20. Dolphin

    Dolphin Senior Member

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    This is the earlier CDC study. Full text at: http://cfids-cab.org/cfs-inform/Cfsliving/nater.etal06.pdf.
    Figures are in Table 1.

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