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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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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. oceanblue

    oceanblue Senior Member

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    I emailed the first author about this. She said it should be seconds for stair climbing, not minutes. The response to my query about the low-looking fatigue catastrophizing score made no sense to me so I asked for clarification, but haven't received any yet.
    By my calculations that's a minimum total score of 1 and a maximum of 5, yet the mean score is given as 0.9.

    The stair climbing duration SD didn't look very big:
    Stair climbing duration (seconds) 85.2 20.0
    i.e around 2/3 of patients completed within 65-105 seconds. I'm not sure how that compares with the SD for healthy people.

    Similarly, the Fatigue Kinesiophobia figures weren't that big either:

    TS-fatigue 13.0 4.6
    (min 8, max 36, 13 average equates to an average between strongly disagree and disagree with Kinesiophobia statements)

    TSK-CFS 32.0 5.3
    (min 17, max 68, 32 equates to an average of 'disagree' with Kinesiophobia statements)

    So although the reported correlations are indeed strikingly high (albeit on a very small sample) it may be that rather weak levels of Kinesiophobia are correlating strongly with rather small differences in stair climbing times. Which isn't much to write home about.
    SOC and Dolphin like this.
  2. oceanblue

    oceanblue Senior Member

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    I'm not sure you can't have ME and be able to climb 2 flights of steps without physiological risk - unless you know of evidence to the contrary. Like most illnesses people can have ME at different levels, and indeed most patients experience the illness at different levels at different times. Personally, I couldn't climb 2 flights of steps now (or any time in the last 15 years), but I wouldn't automatically assume that those who can don't have ME. Presumably the study was at an outpatient clinic, so only the more ambulatory patients would have been able to attend.

    (The Pacific Labs study were maximal exertion; heart rates in this Nijs study show this was not the case for stair-climbing.)
  3. Dolphin

    Dolphin Senior Member

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    Jo Nijs is a man. Interesting, as they just thanked me.

    This is the task:
    So I'm guessing 104 steps (52 x 2).
    85 seconds would be too quick.
    I could be wrong - it's 17 since I would have done a similar task.

    General point (to all)
    Regarding the task:

    The "without resting" bit makes it a more onerous task.

    Perhaps the "without resting" bit reduced the variance/SD.
  4. Snow Leopard

    Snow Leopard Senior Member

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    I said this earlier, but the (low) mean levels of "kinesiophobia" suggest that it is not a problem for most patients.

    It is bizarre that the authors have not discussed this in the paper.
    Sean and Dolphin like this.
  5. biophile

    biophile Places I'd rather be.

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    After reading this thread, my feeling towards this paper has advanced from disappointment to disgust.

    The generalizations in "Conclusions" and "Implications for Rehabilitation" are irresponsible and go beyond the evidence.

    This paper gives the impression that all patients in a rehabilitation setting can not only easily walk up and down 2 flights of stairs without immediate symptom exacerbations but also should be able to do whatever other daily tasks the patients perceive as "threatening" in life (despite the test being once off for the whole week), while those that are reluctant to do so or perform badly during the task are merely suffering from an irrational fear of movement that can be overcome through cognitive restructuring to resolve the problem.

    These conclusions depend on patients who can climb up and down 2 flights of stairs without any symptom exacerbations whatsoever (what about those that can't?), which to me is still a major red flag these patients cannot be generalized to the wider community as the researchers have done. Judging from what I've read about and experienced with real physiotherapists and biopsychosocialists who treat ME/CFS and believe there is nothing pathophysiological stopping patients from resuming all normal activities, this paper would be dangerous in their hands.

    The sloppy errors passing peer review are unsurprising though, why is the peer review process in academia so poor?
    Firestormm and Dolphin like this.
  6. Dolphin

    Dolphin Senior Member

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    It would be interesting to see if the patients had reduced their activity before the test.
    Bazelmans et al (2005) found that patients did less than usual in and around the time of an exercise test:

    So it can be unnatural.
    Similarly, they may have cleared their schedule a bit so that they wouldn't have anything on later on the same day or the following day.

    And of course one can't extrapolate from doing a task once, to doing it several times.
    oceanblue and Firestormm like this.
  7. Firestormm

    Firestormm Senior Member

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    It's your last sentence that appealed to me Dolphin (though everything you and Biophile said I would agree with). This is the 'thing' with my condition - the ability to only do an 'exertion-related' task once or not be able to repeat it again until I have rested for a length of time disproportionate to the expenditure of energy.

    Then of course you have the 'payback'. Which is so damn unpredictable. Because I can't predict the payback doesn't mean I have a fear of engaging in the activity. I do engage. I do 'push'. I don't have a problem with the challenge. I just can't predict what the effect will be or whether there will be one as that's often unpredictable too (depending on the task and how I am feeling health-wise generally).

    Yesterday, it was reading. The day before it was a walk with stick round the garden. All depends on so many variables that I can't say 'No. That's too much.' Until I engage with said task and feel the effects afterwards, and the next day etc. Often I find 'exertion' will lead to increased sleeplessness or an inability to rest satisfactorily. But that isn't always the case either.

    My biggest complaint with this condition is the unpredictable nature of it. When I am in a period of relative stability it is so much easier to plan. At present it is just all over the place. 'Take each day as it comes' is reduced to 'Take each hour as it comes'. If I had to walk up and down stairs I would do it - not out of choice but because I had to. I just don't understand how they can measure 'fear' or 'avoidance'.

    Asked once in some assessment or other 'If you were in a burning building, would you be able to get out?' I said, 'I would certainly do my best even if I had to crawl.' But then I was relatively 'well'. I was at an assessment for heaven's sake and not stuck in bed. Relativity. So essential.
  8. oceanblue

    oceanblue Senior Member

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    That's a good point about it not being a natural test, and the importance of repeatability for real world usefulness. Also, the patients would presumably have to travel to and from the test location and depending on their levels of activity that itself can be pretty draining. So I'm not sure we are much wiser for all this.
  9. Firestormm

    Firestormm Senior Member

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    Am also not convinced about it being 'peer reviewed' either. It's an unusual publication. Well, all right, I admit it - I haven't looked. But it's not a conventional journal that I recognised that's for sure.
  10. Dolphin

    Dolphin Senior Member

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    I'm not sure there is much of a correlation, in the ME/CFS field anyway, between the impact factor (say) of a journal and the quality of the peer-review. It's interesting reading the open access pre-publication histories of biomedcentral.com journals how the standard can vary.
  11. SOC

    SOC Moderator and Senior Member

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    Is it worth writing to the journal and pointing out some of these glaring errors? Since it appears to be a very minor journal, they may not care, but who knows?
  12. Dolphin

    Dolphin Senior Member

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    The journal doesn't have a facility for e-letters which take less work/are easier to get published. So it would need to be a letter for publication. If it (a letter) gets published, it will be listed in PubMed (as is this article). Up to people individually if they want to do this - I've too much on at the moment.
  13. Firestormm

    Firestormm Senior Member

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    Yeah me too. Got to climb some stairs! :D
  14. Nielk

    Nielk

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    Time yourself, to make sure that you are not "catastrophizing".
    Firestormm likes this.
  15. SOC

    SOC Moderator and Senior Member

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    Bleah. A letter for publication would be much harder and they may not be interested in letters for pub that are not from professionals in the field. Oh well, it was a thought.
  16. biophile

    biophile Places I'd rather be.

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    Another irresponsible related study by some of the same authors?

    Gives the impression that daily functioning and chronic pain in CFS just depend on psychological characteristics such as depression and "catastrophizing". Didn't even bother to evaluate whether ME/CFS symptoms correlate with daily functioning and catastrophizing, so phrases like "strongest correlations" and "main predictors" are essentially meaningless.
    warriorseekspeace likes this.
  17. Dolphin

    Dolphin Senior Member

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    I've started a thread on this other paper: http://forums.phoenixrising.me/show...-daily-functioning-in-CFS&p=242629#post242629 .
    Of course, if it could still be discussed here, if it links in with the OP. I just sometimes get worried that insightful points on a paper might not be so easy to find if they're not in the thread for the paper.
  18. warriorseekspeace

    warriorseekspeace

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    I just shared this on FB to groups, and friends, A to Z who might be allies.
    I think I may have just found something to which I can direct my energies. Just found out about this article, via FB post, and have just been alerted to the existence of this thread of dicussion about it here at PR.
    I have not read all posts here, but am trying to channel my anger directly into action, for a change.
    Here are the words I put atop the share of the article on FB.
    "I want to find out what governing body for ethics is supposed to be the watch-dog against these sorts of crimes, and take ACTION to see that this sort of abuse is NEVER AGAIN allowed to be perpetrated, and also that those who have conducted this harmful pseudo-research, be appropriately punished! Can any experienced researchers or advocates help guide my efforts? I need help. Any non-ill, non-disabled would-be allies, this is an easy way for you to help us."
    And a comment under the post:
    It's worse than saying it's all in the mind: it's a circular redundancy of that stance. As in saying, "OK, I do not acknowledge that it is harmful to stress the joints of patients with rheumatoid arthritis past protective range of motion. Therefore, I am going to say that RA patients are insane if they are concerned or worried ("catastrophizing")when being made to have their joints stretched into harmful ranges.

    Seriously, how does "research" like this pass the ethics review to be allowed. In light of the fact that there is enough true, biomedical research now to at least suggest that ME/CFS patients experience different gene expression, proteins in cerebrospinal fluid, and that PENE (post-exertional worsening of symptoms and immune panel) is a real phenomenon and that pushing past the anaerobic threshold, which is markedly lower for PWC/ME, and goes lower yet after overexertion, is physically harmful for us, how can people be allowed to harm patients, and then to add insult to injury, to say that if the patients are wary of it (for good reason) they are crazy?!
  19. warriorseekspeace

    warriorseekspeace

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    So, how can whatever Institutional Review Board allowed this to be done, be held accountable? And could we put other IRB's which allow harm to patients in their "studies" to answer to the same inquiry?
  20. Dolphin

    Dolphin Senior Member

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    Note that there is a new paper with a title that is similar: Influence of Symptom Expectancies on Stair-Climbing Performance in Chronic Fatigue Syndrome: Effect of Study Context. I've started a separate thread on it.

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