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Kinesiophobia, catastrophizing and anticipated symptoms before stair climbing

Discussion in 'Latest ME/CFS Research' started by Firestormm, Feb 14, 2012.

  1. Nielk

    Nielk

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    Why is it that they always pick on CFS patients to try to prove that our limitations are self fulfilling due to either laziness or some convoluted mental warped reason?
    For these type of studies, they have resources and money? What did they accomplish with this study besides proliferating a picture of a mental, lazy CFS model?
    It just helps solidify the way the world looks at us as mentally backward and in some twisted way wishing to be ill? No wonder no one takes us seriously.
    Dolphin and justinreilly like this.
  2. Snow Leopard

    Snow Leopard Senior Member

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    If you look at the questions, and the results, the level of catastrophizing and kinisephobia is actually very weak.

    Note that *pain* was apparently substituted with fatigue/'my symptoms' and so I have substituted below.

    The above questions were scored from 1-4, 1 being strongly disagree, 2 being disagree, 3 being agree and 4 being strongly agree.

    The mean score was 13, SD=4.6. EG most patients did not have Kinesiophobia, since they disagreed with those statements.

    These were the questions of the 'TS-fatigue-S'. It is clear that the above questions were interpreted ideologically by the authors. Without actually measuring inflammation, doing long term studies there is no factually correct answer to the above.

    What the study probably shows is that the level of Kinesiophobia is proportional to severity - which is actually what I'd expect hypothetically. They didn't measure activity levels before, nor do a proper analysis of symptoms and fatigue after so there is no other logical conclusion.
    justinreilly and oceanblue like this.
  3. Dolphin

    Dolphin Senior Member

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    No. It's a pity they didn't for the reason you give.
  4. Dolphin

    Dolphin Senior Member

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    More studies of the role of kinesiophobia and catastrophizing in CFS to follow

    I'm sure everyone will be pleased about this:
    They talk about a Dutch study. But I'm guessing it wouldn't be called "international" and "multicentre" if it was just studies in two centres.
  5. Kina

    Kina Moderation Team Lead

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    This research is useless and stupid.

    What are they studying? Kinesiophobia which is an "excessive, irrational and debilitating fear of
    physical movement and activity resulting from a feeling of vulnerability to painful injury or reinjury".

    I suppose before you study kinesiophobia and CFS, you really should do a study that identifies people with CFS as actually being kinesiophobic. Has any researcher anywhere performed any research that shows the people with CFS have "excessive" and "irrational" and "debilitating" fear of physical movement and activity? These researchers seemed to have performed three studies related to kinesiophobia and CFS without actually researching whether people with CFS have some phobia rather than a rational and normal fear that is associated with their level of health.

    This is a bad study related to design, lack of definition of variables, researcher bias etc. I honestly don't know how these things are allowed to be published.

    When I decide not to do something during my day, it's not because I have an irrational, excessive, debilitating fear of doing it, it's because I choose what I want to use my energy on etc, etc.

    There are no words I can use to describe what I really think of this study.

    Kina.
    SOC likes this.
  6. SOC

    SOC Moderator and Senior Member

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    Isn't it fundamentally unsound to use a set of questions carefully designed to identify responses to something specific (pain, in this case) and arbitrarily substitute a different primary measured symptom (fatigue, in this case)? What is reasonable to do when you are in pain is entirely different from what it might be reasonable to do when you are exhausted (let's forget this "fatigue" crap), at least when you have ME, and possibly in other circumstances.

    Then we have to consider the bias of the questions. For example,
    Is a positive answer to this question automatically assumed to be catastrophizing, whether they're asking about pain or exhaustion? Certainly it's not safe for people with some conditions that include pain (late stage cancer, for example) to be physically active (depending on the definition of physically active, which is not clear from the question). It's been established that what most people consider to be physically active is not safe for many ME patients. So a realistic answer could be interpreted as catastrophizing?

    Or how about,
    Pain or exhaustion could mean there's something dangerously wrong. It does not necessarily mean something is wrong. How are they evaluating answers to this question?

    Is the fundamental assumption of this test (used for pain or exhaustion) that exercise is not risky so the test merely evaluates how severe is the patient's imagined sense of risk? I can see this test improperly used for any number of pain situations in which exercise is counter-indicated. Is this test actually designed for a situation where there is pain, but exercise is beneficial such as RA (I think) or fibromyalgia?

    Maybe if I read the test itself, with all it's questions and caveats, I might have a better understanding of why this crazy-sounding study got past reviewers. Sadly, I can't read very much at a time with my cognitive dysfunction. :(
    Snow Leopard likes this.
  7. Dolphin

    Dolphin Senior Member

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    Nice paragraph

    Nice paragraph:

    Besides all the psychobabble, they do have the following paragraph in the discussion - it stands out a lot:

    Who knows why they included it. Theories might include: (i) a reviewer nudged them (ii) they didn't want one of those letters from those awkward letter writers listing the abnormalities so they thought they would pre-empt it.
    Firestormm likes this.
  8. SOC

    SOC Moderator and Senior Member

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    And I have a problem with the word "fear". I have no fear whatsoever of exercise or physical activity. In fact, I love it. I do know that when I exceed the (low) level of physical activity my body tolerates, I will have a severe exacerbation of my symptoms and a long-term degradation of my baseline. I've tested it many times. I choose to work within my envelope and under proper guidance hope to expand my envelope. I'm far from "afraid".
  9. SOC

    SOC Moderator and Senior Member

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    Betcha anything some reviewer made them acknowledge that research, so they did it in a a half-hearted, kick it into the corner way. "Fine, we'll add a paragraph recognizing that data, but we won't consider it in our conclusions or results."
  10. Valentijn

    Valentijn Activity Level: 3

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    Why not? They stretch everything else :p I wouldn't be at all surprised if only two countries and two centers were involved.
  11. oceanblue

    oceanblue Senior Member

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    I'm always amazed at how medics seem to ignore the fact that the body's two main signals to slow down and cut back are pain and fatigue. These signals have evolved over millenia (well, much more than that) as protective mechanisms in many species.
    Dolphin likes this.
  12. Firestormm

    Firestormm Senior Member

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    Yeah but if they can't 'find' or don't know the 'cause' then they figure you're making it up either consciously or not. Plus saying 'I don't believe you' costs a lot less than long term medication/benefits etc.

    Part of me wishes I hadn't posted this 'research' now. Then again I suppose it helps to see the crap that's being written about 'us'. Apparently, the full paper wasn't available because it had such a low impact when I tried to get a copy. Figures.
  13. Dolphin

    Dolphin Senior Member

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    (I can't remember now everything that was posted so I'm not sure if this point was made)
    I think an important point is that all the participants did the task. This, to me, means the beliefs don't necessarily translate into true avoidance. It's hardly the end of the world if one takes a little longer* to do a task which is seen as reasonably onerous or taxing. So if one does a task, even if it takes a little longer than for other people, I'm not sure whether "kinesiophobia" (fear of movement) is a good word.

    * I'm not sure what the mean and SD are - they made an error in Table 2 as I presume the mean wasn't 85 minutes - I think that was the baseline heart rate).
  14. Dolphin

    Dolphin Senior Member

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    Random thought:
    I wonder would it have been better if they had tested kinesiophobia or catastrophising at another time rather than just before the test.
    It seems possible to me that they might vary at least a little (which might be sufficient for correlations) based on how somebody was feeling e.g. their energy reserves.

    This study tested to see if one of the measures varied over time:
    but testing appears to have been only 24 hours apart.

  15. Valentijn

    Valentijn Activity Level: 3

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    I live in a country where doctors and therapists I deal with have a very good chance of reading this research, and where it might impact government policies and services. By reading about it here, and the problems with it, I'll have an answer ready if someone brings up the K-word. Much better than a blank look!
  16. oceanblue

    oceanblue Senior Member

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    Yes, 24 hours is far too short a time to measure test/retest reliability. Also, they many not have used the same test in the repeat:
  17. Snow Leopard

    Snow Leopard Senior Member

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    85 minutes to go up two flights of stairs!

    The result for "Fatigue catastrophizing" also doesn't make any sense to me as the score is lower than what is possible due to the range of scoring.

    Bad editing or sloppy peer review...
  18. Dolphin

    Dolphin Senior Member

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    Well spotted - should be a number between 1 and 5. I've seen people mess up scales that are scored 1 to x by starting at 0 (and vice versa) but not sure that's the case here as would expect a higher score than 0.9 off the lowest score.

    Pity it doesn't have an open access pre-publication history (like the articles on biomedcentral.com) as then we could tell for sure whether the reviewers were shown a version with errors or not.
  19. oceanblue

    oceanblue Senior Member

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    How threatening an activity was stair climbing?

    The whole premise of this experiment is that stair climbing is threatening:
    but I'm not sure they've shown that stair climbing is threatening:
    But the issue isn't do patients expect more fatigue/pain than other activites in their abritary list, but do the find it threatening. One way to evaluate this is to look at the anticipated fatigue/pain after stair climbing (though this won't account for PEM):

    So that's only a small anticipated increase in fatigue and no anticipated increase in pain, which hardly demostrates that stair climbing is threatening, as the authors repeatedly claim:

    Another approach available to them would have been to analyse the answers to the SF-36 Physical Function question:
    "Does your health now limit you in these activities? If so, how much? Climbing several flights of stairs"
    [yes, limited a lot/yes, limited a little/No, not limited at all]

    The answer "Yes, limited a lot" would indicate the activity is arduous, though even then not necessarily threatening.

    At the very least, they should exclude any subjects who answered either 'limited a little' or 'not limited at all' (it's possible there were no patients in these categories but as some patients had an SF-36 PF score of over 70, there probably were).

    Finally, as the authors themselves point out, there was no proper control in the study:
    I don't think they've quite demonstrated the points they claim.
  20. alex3619

    alex3619 Senior Member

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    I would argue that stair climbing poses a physiological threat to anyone with ME rather than the more innocuous chronic fatigue. Patients may well be aware of that. It is not an irrational conclusion. So this study starts with a faulty presumption, and therefore its conclusions are probably wrong. (As a point of logic they might be correct even with faulty presumptions, and logic does not have rules for determining validity with false premises.) Since we know the premise of no harm from stair climbing is wrong, then entire notion they base this is on faulty. They need to go back and rethink their science.

    As an example of recent research about potential risks, read:

    http://iopscience.iop.org/0967-3334/33/2/231/pdf/0967-3334_33_2_231.pdf

    There are altered peripheral blood flow characteristics (though this was based on Fududa CFS definition) which is consistent with low blood volume, a small heart, or faulty autonomic regulation of blood flow. All three hypotheses here may be relevant. Exercise using stairs could produce harm in all three conditions. This is just one study, Pacic Labs research shows that we are metabolically damaged as a result of exercise - there are several studies to back that now using well understood objective testing.

    Bye, Alex
    Snow Leopard likes this.

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