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Dr. Enlander tackles a poor paper "Fear of movement and avoidance behaviour..."

Discussion in 'Latest ME/CFS Research' started by snowathlete, May 31, 2013.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    But in quoting Dr. De Meirleir to support your theory, you are distorting what he said. Quoting someone to support your argument when he/she was talking about something entirely different calls to question the integrity of your argument. It is neither good research or good writing.

    Sushi
     
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  2. WillowJ

    WillowJ Senior Member

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    the question is whether said fear is justified, in which case it's an appropriate caution and "adaptive", not a "maladaptive" response requiring therapy addressing said fear. Cure the underlying problem (if you can) and the fear will resolve.

    I am sure there are people who are severely allergic to peanuts who fear peanut exposure. This doesn't constitute a problem; this is an appropriate fear because the consequences are indeed detrimental.

    Similarly if people are having relapses due to activity (whatever their diagnosis: ME, FM, EDS*, CHF**), that level/type of activity is inappropriate and it's correct to avoid it. Trying to correct their fear (whether or not they have a genuine emotional fear) of activity is dangerous. This concern/fear about activity which is relapsing them is appropriate.

    *Ehlers-Danlos Syndrome
    **Congestive Heart Failure
     
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  3. alex3619

    alex3619 Senior Member

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    WillowJ [Satire.] Warning: many people fear the humble peanut! We propose a study in which people who fear peanuts are force fed them till they cry uncle. This is clearly an irrational fear that makes people even afraid of products that might have been near peanuts. This is clearly delusional. Some people claim they get an allergic reaction to peanuts. Of 100 patients seen in our behavioural clinic, not one was proven to have a peanut allergy.

    [Not satire.] Fear and anxiety are there for a reason. We should be concerned about PEM/PENE. It is only if that becomes excessive that it might be a problem. In most patients I think we want to do stuff so much that I think any fear or anxiety is trivial compared to that desire, and we go out and do too much.

    [More satire.] Maybe we should be researching how to make ME patients more afraid and anxious, and giving drugs to promote anxiety and fear? They appear to be doing too much and over-riding reasonable caution.
     
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  4. Bob

    Bob

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    I'm sure that there is an element of 'fear' involved in many severe illnesses, including ME.
    But I think we need to be meticulously careful when using words like 'fear' because it can be (purposely) misinterpreted.
    And we need to be especially careful when talking in terms of a 'fear' of activity, or a 'fear' of symptoms.

    Actually, I do fear my illness, and I fear having a relapse. And this is very rational.
    As you all know, it's a ghastly, deeply distressing, incapacitating illness, and it shuts down my brain, robs me of my life, memories and personality, and it causes me pain and exhaustion.
    It makes sense that anyone would want to avoid this experience.
    So it wouldn't be surprising if there was an element of fear involved with ME, just like many other illnesses.

    And it is the case that I constantly monitor my levels of exertion, and I rest when necessary, and I minimise my levels of activity when necessary, and I increase my levels of activity when safe to do so. (So, sometimes I avoid activity, and I sometimes increase my levels of activity.)
    This behaviour is not the result of an (irrational) fear of exertion.
    It is a rational, continously adaptive behavioural strategy that I employ as a symptom management technique, based on the fluctuating nature of my illness, and in response to the symptom known as 'post exertional malaise', or PENE.
    (I use an adaptive pacing strategy.)

    This adaptive modification of my behaviour is very different to an irrational, maladaptive and pathological avoidance/fear of exercise that the psycho-social model of illness promotes.

    I think it's worth emphasising, repeatedly, that we have lower levels of activity because we are ill; We are not ill because we have lower levels of activity.
     
    Last edited: Dec 5, 2013
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  5. Bob

    Bob

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    That's an excellent example.
    Actually, I'm one of those (mythical?) people who suffer from severe nut allergy, and I only have to lick a peanut and I end up with full-blown anaphylactic shock.

    And, yes, I do fear peanuts!!!
    It's not surprising seeing as they are poison for me.
    It's much like anyone else keeping a bowl of arsenic on their coffee table.

    So I employ an adaptive peanut avoidance behavioural strategy.
    It is an adaptive fear, not a maladaptive fear.
    The fear is a rational self-protecting mechanism.

    To attempt to rid me of my peanut-avoidance behaviour would be dangerous, misguided, ignorant and inappropriate.
     
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  6. Bob

    Bob

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    :eek: Yikes! I don't like the sound of that study!!! :( :cry: :ninja:
     
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  7. WillowJ

    WillowJ Senior Member

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    thanks, but it didn't originate with me. both a sugar/diabetic and a peanut/peanut allergy illustration have been floating around for a while now. I think the peanut one is really clear.
     
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  8. alex3619

    alex3619 Senior Member

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    Exactly, Bob. WillowJ is right, these analogies are floating around the web. Anyone looking at fear-avoidance behaviour in ME faces many problems. First, does anyone in the study even have ME? Second, is there real evidence of fear-avoidance? How do you know its not something else? Third, is it adaptive or maladaptive? Without looking closely at other issues including a deep look at the biomedicine, there is no way to be sure its maladaptive. In the case of ME we clearly have severe physiological reactions to doing too much, that is no longer in dispute by anyone who knows the science. So the prevailing hypothesis should be that any fear avoidance is adaptive behaviour, and if any therapy is considered its how to enhance that process in new patients - which opens up a whole new field of research for psychs that they are ignoring, though frankly I would rather see more research from exercise physiologists, at least their findings are objective.
     
  9. Bob

    Bob

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    Another possible useful comparison is with the natural & adaptive activity avoidance behaviour that every mammal engages in.
    When mammals (including humans) are low in energy, tired or exhausted, they have a (natural, inbuilt, adaptive, protective) activity avoidance mechanism, that protects them from damage. The protective mechanism is known as fatigue.

    When a marathon runner finishes his/her race, they are exhausted and dangerously low on energy reserves.
    It would not be wise for them to attempt to run another marathon without resting for a long period.
    The severe fatigue is an adaptive activity avoidance mechanism.

    ME patients experience pathological exhaustion as a symptom.
    Just like a marathon runner, it's not wise for them to ignore their exhaustion.
    We know this all too well from bitter experience.
    Any physician who doesn't know this, is entirely ignorant of the nature of the illness, and shouldn't be involved in it.
     
  10. snowathlete

    snowathlete

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    I take it you havn't tried CBT for it then? Works wonders apparently...so the nuts say anyway! ;)
     
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  11. Bob

    Bob

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    Yes, I experienced a 'recovery'! ;) (PACE style)
     
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  12. biophile

    biophile Places I'd rather be.

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    I have not looked at the science on this yet, but there have been claims of successful graded peanut exposure:
    http://en.wikipedia.org/wiki/Peanut_allergy#Treatments

    The maladaptive fear avoidance theory in ME/CFS reminds me somewhat of geocentrism. To a casual observer, the Earth does appear to be the center of the solar system or universe, so people took it at face value. Similarly to a casual observer, ME/CFS patients appear to fear activity and therefore avoid it, so people take that at face value and (without understanding the characteristics and processes of post-exertional symptoms) assume that it is maladaptive by default.

    To those with greater understanding of how things operate, the Earth is not the center of the solar system or universe, and the apparent avoidance of activity in ME/CFS is not usually maladaptive. It is certainly possible that in some cases it is maladaptive or could be improved, but where is the evidence that it is prevalent enough to characterize ME/CFS? The last fear avoidance related papers I read had limited design and biased assumptions. There is also no objective evidence that the proposed "treatments" (CBT/GET) results in sustained increases in total activity levels anyway.

    Fear of fire is rarely maladaptive, and many of us have been repeatedly burned with activity. As Bob and the ICC points out succinctly, fatigue and pain (etc) are bioalarms to help prevent further damage. I think that over time, patients usually and naturally attempt to find their own balance between tolerating symptoms and maximizing activity.

    Proponents of CBT/GET however tend to believe that patients by default have significant maladaptive problems which need fixing, are often swinging between extremes of activity, are either too passive or too active, have erroneous views about activity and struggle to find an optimal balance without intense help from outside "experts" (amateurs), etc. I have seen enough sloppy science in the cognitive behavioural approach to ME/CFS to become very suspicious of any claim in relation to it and be very weary of their grandiose sense of overriding insight into our lives and illness.
     
  13. John H Wolfe

    John H Wolfe Senior Member

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    If you are talking about the YouTube clip then not at all, unless I missed something?- he wasn't exclusive in his comments re: sources of inflammation. It's one or two of his principals I employ, not an open and shut full pathophysiological model - that much is patently clear from the overtly mixed bag that is a conceptual multiple source chain of relations

    It's certainly not a strictly 'scientific approach', more attempting to join the dots/thinking out loud. Some of us like to try to reconcile certain interconnected issues that way, appreciate it's not everyone's bag :)
     
  14. John H Wolfe

    John H Wolfe Senior Member

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    Aye, that shouldn't even be an issue, clearly it is. I suppose where "maladaptation" comes in is where the response is deemed less/un- justified

    Absolutely agree, tackling such fears is best approached as part of a joined up strategy that actually delivers on the promise of proving that certain fears (obviously not all fears) in this regard are unnecessary

    When we fully understand the illnesses noted I will be happy to fully agree/disagree

    As it stands, I can conceive of conditions in which activity, particularly certain types, is reasonably well tolerated and it is my sense that this tolerance often grows in relation to recovery, not just because of anecdotal evidence to support this notion but also what I see in the PWME I know (one or two have been down at 40%/50% and are now able to make it to support group meetings on foot/by bike etc without significant PENE)

    I myself have recovered/maintained relatively normal levels of (sustained/tolerable) physical activity in the past (although admittedly I didn't manage my lifestyle very diligently and alcohol/diet/NSAIDS/poor sleep discipline/overdoing it in terms of work/posture and late nights/viral infection eventually got the better of me!)

    Agreed, unless/until you address the underlying issues

    Agreed
     
  15. Valentijn

    Valentijn Activity Level: 3

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    Even better: http://www.cfids-cab.org/rc/Wiborg.pdf (done by the hardcore CBT/GET group in the Netherlands) showed that CBT with GET as a core component (following the manual at https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1009C&L=CO-CURE&P=R1774&I=-3 ) in three of their previous trials was completely ineffective at increasing objective physical levels as measured by actometers.

    But questionnaire scores said everyone felt so much less fatigued! So CBT/GET must work, right? :rolleyes:

    John H Wolfe - the above study, and the three studies which it reviews, are an excellent illustration of 1) the ineffectiveness of CBT/GET when outcomes are measured objectively, and 2) the way that proponents of these treatments will go to great lengths to cover up and spin the results.

    First, negative actometer results were not mentioned in the initial three studies - only positive results from questionnaires. This is a fundamental academic dishonesty, yet it is pretty much par for the course when it comes to CBT/GET research in ME/CFS.

    Second, it demonstrates that questionnaires are not a reliable measurement of physical functioning, yet in many cases, these questionnaires are the only measurements used. Likely the Dutch study was forced to use/publish them eventually, whereas the British researchers are free to stick to subjective measurements.

    Thirdly, it demonstrates why abstracts and reviews absolutely cannot be trusted. If you conduct several studies of a therapy and the objective measurement shows no improvement, how would you summarize the results? I'd go for something like "CBT/GET is ineffective at increasing the sustainable activity levels of CFS patients".

    Yet somehow they end up with "The effect of CBT on fatigue in CFS is not mediated by a persistent increase in physical activity." Okay, well I guess that's sort of true, if we assume that the questionnaires are a better measurement of fatigue than the activity levels are. So let's read the Discussion - maybe there's a better explanation in that part of the paper: "In the light of these findings, changing illness related cognitions seems to play a more crucial role in CBT for CFS than an increase in physical activity."

    So if increased physical capacity didn't make the patients do better on questionnaires, then it must be their changes in thinking! It wasn't really the activity after all, just becoming more positive thinkers. Of course, this doesn't solve the problem that the patients for whom CBT/GET was a "success" are still just as incapacitated as they were before treatment. And it relies on the rather baffling assumption that getting better questionnaire answers from patients is more relevant than getting them to a higher level of physical functioning.

    This sort of spin illustrates the crux of the CBT/GET "success" issue: do you want to give better answers on questionnaires, or do you want to be more functional? Because CBT/GET has been extensively demonstrated (by its own proponents) as only doing the former, and never the latter.
     
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  16. Valentijn

    Valentijn Activity Level: 3

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    My mistake ... I've edited my post to specify that no one is inappropriately fearful of activity. Though personally I prefer to avoid words with strong emotional content like "fearful" when describing a completely rational behavior.
     
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  17. alex3619

    alex3619 Senior Member

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    biophile There is indeed research showing that repeated exposure to peanuts in very controlled amounts (much less than a single peanut) can lead to loss of the allergy. This is because food allergens also invoke a tolerance response. What they do, and I have not seen anything on this in years so my comment is purely from memory, is giving a dose small enough to not provoke an allergic response, but large enough to provoke a tolerance response. Its a dose in micrograms I think. Then they slowly increase the dose. So long as they keep it in the response window tolerance increases and an allergic response declines. This is not an easy process, and if they get the dose wrong the response will be a full allergic reaction. I also do not recall the success or failure rates.
     
  18. John H Wolfe

    John H Wolfe Senior Member

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    Ah ok. Yes, certain terminology does rather feed into certain unfortunate/unfortunately common beliefs concerning mindset/character, although it's a little tricky to come up with an equally succinct alternative way of characterising the fear that underlies our wariness to varying degrees. I guess it helps if you use: "legitimate fear"
     
  19. Richie

    Richie

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    On PEM.
    This is often presented as diagnostic for ME/CFS. I have always been concerned about its specificity.
    Is the PEM of ME/CFS different from that which would be experienced in active incl chronic infection e.g. Lyme's, chronic lung probs, micronutrient deficiencies impacting on mitochondria etc?
     
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    So very very true. I wish I could 'like' ten times!
     

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