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de Meirleir's involvement in 'catastrophisation' studies

Discussion in 'Latest ME/CFS Research' started by MeSci, Sep 14, 2014.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Sorry but this isn't new research, but I only found it yesterday when looking for other info, and I can't find any other suitable forums or existing threads about these studies.

    I was dismayed, to say the least, to find that one of the doctors/researchers most respected on PR was involved with these two studies, the later one having been published in June 2012.

    1. http://link.springer.com/article/10.1007/s10067-012-1946-z
    2. http://www.ncbi.nlm.nih.gov/pubmed/19086101

    I see that there is supposed to be a comment from @Tom Kindlon on the 2nd paper, but I can't find it.
     
    golden, snowathlete and taniaaust1 like this.
  2. alex3619

    alex3619 Senior Member

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    In case anyone is unaware, catastrophization is at the core of CBT theory.
     
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  3. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I am still feeling my way with trying to understand the psychologists' model of CFS but there seems to me to be a contradiction here.

    At first sight it would seem that pain and pain catastrophisation have to be correlated, if pain is subjectively reported and pain catastrophisation is the state of 'thinking pain is worse than it is'. So the correlation is in fact no correlation at all - just writing the same thing down two different ways.

    But that must be wrong, if pain catastrophisation is what the psychologists say it is. If pain catastrophisation is thinking pain is terrible when in fact it is not so bad, then pain catastrophisation must be inversely related to pain. Pain catastrophisation cannot occur in a situation where the pain really is bad because it would not be catastrophisation. So they cannot correlate - they should counter-correlate.

    Maybe I am oversimplifying but I sense muddled thinking in the psychology world. All they seem to have proved is that their way of measuring pain catastrophisation cannot be measuring that.
     
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  4. taniaaust1

    taniaaust1 Senior Member

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    Im shocked at seeing this.
     
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  5. daisybell

    daisybell Senior Member

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    So basically, this is research telling us that if you feel more pain, then you will feel bad about the pain, lower in mood and not exercise as much.... That's ground-breaking!
     
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  6. Gijs

    Gijs Senior Member

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    First: psychology is not an objective science! It is more theoretical philosophical. Psychologists make connections which have no connection to it. It is bla bla.... in 'normal language': BULLSHIT! Sorry.
     
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  7. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    That seems to be what the study actually shows, which would seem to contradict the researchers' conclusion that much of the pain is due to it not really being that bad (or something - I cannot quite work it out).

    But then I notice that the r value for catastrophising and pain is -0.70, which would mean the more pain there is the less people 'overreact' to it. Which would suggest that people with CFS are really stoical, or even unconcerned about their pain. I think I've lost the plot.
     
    Never Give Up, zzz, vli and 14 others like this.
  8. biophile

    biophile Places I'd rather be.

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  9. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Someone has, and I don't think it's you!
     
  10. Martial

    Martial Senior Member

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    Basically people should just leave certain things to specialists and stop trying to analyze and interpret it themselves. Misinformed research ouch..
     
  11. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    What kind of specialism would be appropriate?
     
  12. A.B.

    A.B. Senior Member

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    I think the idea that people with ME/CFS overreact to ordinary symptoms and problems is mostly nonsense. We're actually desensitized to pain, fatigue and other symptoms. Many of us are eerily optimistic considering the situation we're in.

    But psychologists can't see the obvious because they have preconceived ideas. and if they want to claim ME/CFS as psychological disorder, they have to invent some psychological problems. So they end up pathologizing behaviour that is completely normal in the situation we're in. When we rest and conserve energy they call it exercise phobia. When we suffer from fluctuating symptoms, they call it boom and bust behaviour. When we reject their psychological therapies (often because we've tried them with no benefit) they say we want to remain ill because we're gaining so much from being ill.

    How do we explain to psychologists that they're utterly out of touch with reality?
     
    Last edited: Sep 14, 2014
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  13. Esther12

    Esther12 Senior Member

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    I have found it helpful to look at the specific questionnaires being used and how they are scored. Very often these sorts of papers talk about measuring 'catastrophisation', 'fatigue', 'resilience', 'personality' etc, as if we have reliable measures of these things, and that can be confusing. When looking at the actual questions being asked I find that it's often totally unsurprising that groups of people facing particular difficulties will tend to have abnormal scores compared to healthy controls, or those facing different problems. Too often unjustified assumptions are then made about the nature and importance of these differences.

    When I started looking at psych research I was amazed at how much faith is seemingly put into questionnaires.

    edit: No idea about these papers though, not read them.
     
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  14. lnester7

    lnester7 Seven

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    I am one of the "lucky ones", that get some knots in my muscles sooo Big that my masseuses says she never seen anything like it, not counting the swollen lymphs, so when I am in pain, anybody can feel their way around my pain. I would love to have a session w this psy and see their rationalization then.
     
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  15. A.B.

    A.B. Senior Member

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    I have the suspicion that the psychologists who "explain" ME/CFS never actually see any patients, and base their opinion on questionnaires and imagination. That would explain why these theories are so out of touch.
     
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  16. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    It is difficult trying to convince therapists of all sorts that they may be out of touch with reality. I had this problem with physiotherapists and occupational therapists wanting to treat arthritis with unproven modalities because of irrational beliefs popular with their communities. It is easier for doctors because they also have the job of diagnosing and explaining. Doctors can retain self-esteem even if having to say they have nothing to offer other than sympathy and hope. But if you say to a therapist that everything they do is unproven and we might as well close down their department you cannot blame then for trying not to believe you. And over the years it has always seemed to me that there are some therapists who ARE in touch with reality and can help patients a lot by using their common sense and experience rather than trendy beliefs.

    There needs to be a forum where there can be open criticism of research in ME. Peer reviewed journals are not much use these days because there are journals that will publish anything and I do not actually approve of peer review veto of publication anyway. What is needed is debate once things are published. You get that at a professional organisation like EULAR for arthritis (which is really a 'European College of Rheumatology') but ME needs a forum not tied to a particular professional discipline like neurology or rheumatology (or psychiatry). Some scientific meetings are growing up but they may not yet be at the stage of much open debate on new research.

    The best forum for this may be something like PR, in fact. I suspect a lot more researchers read PR threads than let on. It would be good if they were prepared to defend their ideas on PR. Some people might feel a bit threatened by the prospect of not being protected by a gang of like minded chums, but then one might have to ask why they felt so threatened!
     
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  17. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I doubt if there are many of us who have not repeatedly pushed at our boundaries, having difficulty believing/accepting that we are now chronically ill, with all the sceptics we come across (e.g. doctor, psychiatrists, friends, family and the media) constantly telling us it's all in our minds and that we just have to try harder.

    I have done it myself, having doubted my own beliefs under the weight of such pressure and scepticism (not to mention the longing to lead a normal life). And of course, every time it has caused a crash.

    I remember in the early days lying on the floor after trying to clean out my fire grate, exhausted and weak, unable to get up, or having to go up the stairs on hands and knees, unable to stand up, wondering what the hell was wrong with me. I had no idea about pacing.

    I don't think any of us pace perfectly, but I rarely have to lie on the floor or go up stairs on my knees now, thanks to what I have learned from fellow-sufferers. It's such a hard lesson to learn, and has to be reinforced constantly.

    So 'experts' claiming the opposite, some even forcing people to exceed their limits, amounts to grievous bodily harm, as does using CBT to make people unlearn their coping strategies.

    I have never avoided going up stairs due to fear. I have sometimes avoided it due to exhaustion, whilst looking up the stairs in frustration, really really wanting to go up there.

    To see KDM linked with this nonsense seriously reduces his credibility.
     
    Last edited: Sep 16, 2014
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  18. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    The BMJ have invited patient reviewers, as discussed in this thread.
     
  19. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Interesting, although it seems that patients are not allowed to comment on the science (methodology and originality), just the 'patient focused aspects'
     
  20. Esther12

    Esther12 Senior Member

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    Absolutely. If there were more venues that allowed patients to publicly discuss problems with researchers on an equal footing, a lot of the problems around CFS could have been avoided imo.

    I could see some potential for problems when so many patients have had their lives made worse because of the work of certain researchers, but I'm sure that there could be a way of effectively moderating any discussion in a way that would be able to account for this.
     

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