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Pacing in ME/CFS: a literature review

Discussion in 'Latest ME/CFS Research' started by Ember, May 25, 2012.

  1. Ember

    Ember Senior Member

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    Disability and Rehabilitation, 2012, Vol. 34, No. 13 : Pages 1140-1147

    Pacing as a strategy to improve energy management in ME/CFS: a consensus document

    by Ellen M. Goudsmit, Jo Nijs, Leonard A. Jason, and Karen E. Wallman

    http://informahealthcare.com/doi/full/10.3109/09638288.2011.635746

     
  2. Anne

    Anne Senior Member

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    A question: I would need a brief explanation of how the type of "pacing" used in the PACE trial differs from the pacing normally recommended by ME experts and associations. Could someone help me specify the difference?
     
  3. Hope123

    Hope123 Senior Member

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    I haven't read this article but some experts recommend doing no more than 50% of what you could do to conserve energy and reduce PEM. The PACE trial uses a 70% figure instead. That's as much as I remember.

    This is the official PACE website with the two versions of the Pacing manual -- one for their therapists and one aimed at patients, with the latter written in more lay language.

    http://www.pacetrial.org/trialinfo/
     
  4. alex3619

    alex3619 Senior Member

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    Hi Hope and Anne, the main difference between traditional pacing and adaptive pacing (if I recall correctly) is the traditional pacing has a low limit which you stay under, and adaptive pacing has a high limit which you stay over. Bye, Alex
     
  5. EllenGB

    EllenGB

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    Hi all,

    Since this thread began with my paper, herewith some thoughts:

    Pacing is defined as the self management or regulation of activities aimed at preventing an increase in symptoms. That's it. The problem is that it's also a colloquial term but here is the scientific, defined one. Adaptive pacing is a mystery to me (who would have a strategy called maladaptive pacing?). PACE trial apparently tested an intervention with it included and it doesn't work but adaptive pacing as they tested it is a million miles from pacing as described in the paper above.

    Re the scientific pacing: there's no 50% rule. Why should there be? No one has shown in all these years that functioning well below what you can is helpful. To the contrary (Jason). It can make you worse. I like symptom-contingent pacing (you stop or rest when you begin to feel unwell) and others use time contingent pacing (e.g. 15 minutes activity followed by 15 minutes rest). Jason's research indicates that keeping within one's limits/envelope, i.e. doing what you can, is helpful. Stabalises you. We don't know about any other type of pacing that's been tested. As far as evidence is concerned, symptom-contingent pacing is helpful, to a point, and safe.

    PACE did have a 70% rule (how do yo work that out?). The version they tested came from AFME (devised by an OT, very complex and it had elements taken from conditioning theory. Not applicable to a neurological disease but then, I don't think the OT saw ME as one).

    BTW, Jo Nijs who co-authored the paper appears to have changed his mind and has gone over to GET without advice to push. Doing a RCT to see if that works.

    Hope the above clarifies.

    Bye

    Ellen
     
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  6. EllenGB

    EllenGB

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    thanks for the likes etc
     
  7. biophile

    biophile Places I'd rather be.

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    I have not read this paper yet but would like to do so in order to further analyze differences between pacing and APT. Personally I try to do as much as reasonably possible without reducing overall function or quality of life. It is an intuitive balance one learns after years of observation. I'm not perfect and sometimes for various reasons I do too much and pay the price. How many moderately affected patients can claim the management of their condition is so perfect that they never experience any activity-related consequences at all?

    Pacing helps to avoid the consequences of too much activity. However, it is important to point out that CBT/GET as conducted in the PACE Trial does too, it is not strictly time-contingent nor strictly anti- symptom-contingent. CBT/GET does "consider increase symptoms as natural response to increased activity" and expects patients to tolerate a degree of temporary post-exertional symptoms, but only as long as it does not interfere with function etc and it also does "prioritize what you can / cant do within energy limits".

    I need to examine it further because I don't remember if "perceived energy limit" means what will induce an overall worsening of health vs what will trigger any transient exacerbations at all. However, when considering that CBT/GET are presented as gently pushing the boundaries vs APT always staying within them, and CBT/GET does not encourage pushing boundaries to the point where function declines, this suggests the "boundaries" in APT are leaning towards any symptom exacerbations whatsoever.

    So if APT is about generally avoiding exacerbations and staying under 70% of perceived capacity (or even worse, 70% of what they believed will trigger any symptoms at all?), then no wonder their self-reported physical function was reduced at the end of the PACE Trial when compared to the SMC-alone group. How many real-world pacers avoid all exacerbations whatsoever? Doing so would be impractical and lower function, especially if aiming for 70%!!! The aim is to not induce them too much nor too severely nor let them accumulate to the point where they reduce overall function or lower quality of life (I suspect that severely affected patients are that way in part because the mere idling of brain and body is contributing to a perpertual state of "post-exertional" symptomatology so it is much easier to overdo it).

    Does several hours of symptom exacerbation and possible delayed PEM after grocery shopping mean the APT 70% rule (and pacing in general) has been violated and grocery shopping should be avoided or reduced? "Mal-Adaptive Pacing Therapy" indeed! (MPT or MAPT). An interesting implication is that PACE found APT to be "safe" and had no negative effect on fatigue, it did not apparently lead to evidence of "deconditioning" either. APT is called "adaptive" for "allowing gradual increases in activity as the participant feels able", but how can a patient know what their boundaries are if these are never experienced?

    Does this mean all transient symptom exacerbations whatsoever too rather than just overall condition? Obviously patients should not "push through symptoms" too much, but, would it be wrong to state that those who use pacing, also tolerate a practical degree of post-exertional exacerbations in order to get on with their lives and also use this feedback to adjust their "perceived capacity"? Would be ironic if "adaptive" pacing therapy was less adaptive than regular pacing. If regular pacing avoids exacerbations in general but does not have a 70% rule, could it be said that pacing therefore aims for maximum capacity ie 100% before symptom exacerbation sets in?

    The underlined text suggests to me a degree of post-exertional symptoms are indeed tolerated, although perhaps not as much as PACE style CBT/GET which attribute these symptoms to the consequences of unaccustomed activity after "deconditioning". The cognitive behavioural model of CFS seems to think many patients are constantly scanning for the slightest increase in symptoms and then either avoiding all symptom exacerbations altogether or become stuck in a perpetual boom-bust cycle or all or nothing behaviour.

    Have White et al in part set up a false dichotomy between CBT/GET vs pacing in terms of tolerating symptom exacerbations? Although it is promoted as "pushing the boundaries" as opposed to staying within them, CBT/GET as in the PACE Trial does not aim to force through symptoms nor disregard an overall worsening of the condition. It aims for gentle increases in activity, expects toleration of temporary activity-related exacerbations which supposedly go away as the body gets used to it, then attempts another increase and so on. What PACE seem to regard as state of the art management (tolerating a lower degree of post-exertional exacerbations) may already a fact of life or consequence of living for many patients, including those that "pace" (except those in the PACE Trial!).
     
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  8. biophile

    biophile Places I'd rather be.

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    I also noticed Jo Nijs' name on the recent systematic review, "How to exercise people with chronic fatigue syndrome: evidence-based practice guidelines". I became concerned about it when I realized that the authors make claims about what patients can supposedly do without exacerbating symptoms, but usually relied on studies which do not require compliance to the durations and intensities described, drawing recommendations based on the intended goals of these studies rather than what patients actually did.

    Only self-reported fatigue and self-reported physical function is considered in the outcomes, no objective data to help distinguish genuine improvements from perceptual conditioning due to encouragement/expectations. They mention common shortcomings of the evidence reviewed (including lack of data on compliance), but these limitations severely undermine the recommendations. The paper also lacks effect sizes and apparently misinterprets the FINE Trial as showing significant improvement for physical function.

    These recommendations might be OK for highly active or mildly affected patients, but they seem ridiculous to me and many other patients. They state that "The exercise intensity can be determined by using the individually derived target heart rate [(220 minus age). 0.75]. Target heart rates can be used to avoid overexertion." This means that I can supposedly do exercise up to 140bpm without exacerbations, which is untrue. Yes, I know, just anecdote +1, but still.

    On the good side, they state that even with CBT/GET recovery is rare, and point out that time-contingent approach cannot be too strict and must account for post-exertional symptoms ie adapt to the exercise tolerance of the patient and recommend rests after exercises/activities "to account for the delayed recovery following physical activity". However, even the PACE therapy manuals for CBT/GET have similar recommendations, it is not strictly time-contingent either, they expect the patient to tolerate a temporary degree of increased symptoms while adapting to the new activity level but not if it interferes with function.

    PACE is a classic example of how this systematic review makes recommendations based on presumed increases in activity rather than actual increases in activity. The mere goals of PACE style CBT/GET are incorporated into the actual recommendations, despite the fact that PACE did not require participants to increase activity as presumed nor did it publish evidence of increases in activity (if anything, the dismal average 6MWD scores suggest that the GET group never came remotely close to the goal of 30 minutes exercise 5 times a week despite having 12 months to do so).

    Apologies if I sound overly critical, but anything presented as "evidence-based practice guidelines" may have serious implications on patients. I've already been through enough physio-rehabilitation-babble in real life.

    Deconditioning has been pretty much debunked as a major factor in ME/CFS, and the notion of major boom-bust cycling as a common pathological feature of ME/CFS has been recently challenged in another systematic review on activity, which included the issue of activity variation. Since CBT/GET does not seem to increase activity much anyway it cannot be assumed that lofty exercise goals are being reached. The implication is that patients test their limit, feel worse, and then go back to their baseline level. Although some patients may increase exercise, there is also the problem of activity-substitution to consider.

    There must be other mechanisms for the supposed self-reported improvements for the minority of patients, some of these may be genuine improvements due to reasons other than what the underlying rationale for the therapies assume, but it is also possible that a large degree are methodological artifacts which are difficult to distinguish. For example in the PACE Trial, APT group were told that improvement/recovery was unlikely while the CBT/GET groups were told improvement was likely and recovery was possible and even aimed for. The APT group were encouraged to do less and listen to their body while the CBT/GET groups were discouraged from doing that and encouraged to do more and probably instructed on how to perceive symptoms as less obnoxious.

    I also take issue with the prevailing attitude in the medical community that ME/CFS patients by default "aren't doing enough" and need to exercise for the sake of exercise. This never helped me, and exercise should never interfere with basic living, there are far more important activities to do first, such as housework. In fact, unless it has a specific purpose which the patient really needs, exercise should not be a "priority". The activity ceiling is real and is not primarily "deconditioning", but I personally find the ceiling is not a fine line between black and white, it is more like a padded translucent rubber band, although sometimes it does snap back suddenly as if a threshold has been triggered, and further symptoms are much easier to manifest during states of relapse.
     
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  9. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    additionally, APT was based on stabilising an assumed 'boom and bust' or 'push-crash' model, which is actually a model assumed by GET. This model assumes an all-or-nothing/catastrophising approach and is not supported by evidence, as shown here and here (and probably other places, but those were the two I found right off).
     
  10. EllenGB

    EllenGB

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    A short point as I'm pacing: CBT is aimed at increasing activity while pacing is not. The CBT protocol for CFS is based on theories relating to pain which in turn are based on the operant conditioning model. Thus the aim is to break the (learnt) association between stimulus (symptoms) and response (rest). Ergo, the patients are encouraged to ignore symptoms and plod on. This is the opposite of pacing (no theoretical model but evidence of PEM).

    Systematic reviews on CBT alone or pacing have not been done and there’s only one (by Larun) on GET. There’s one on exercise (Edmonds et al) but pacing is not exercise. There are one or two on combinations, so we don’t know if one or the combination works, when it does, and for who. All are of dubious quality. (Authors tend not to read abstracts).

    We humans will go beyond our limits once in a while to have a life, but then we tend to suffer for ti afterwards. And overactivity isn't the sole reason for PEM. The weather can make you feel worse.

    I see ME more as like meningitis or MS so the whole CBT protocol and GET are just illogical to me. APT comes across as overly complicated and lacking in a theoretical basis. And without any but anecdotal support, it's hard to take seriously. As long as people realise that APT is not pacing, there's no problem.
     
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  11. EllenGB

    EllenGB

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    Sorry to be so straight talking: feel very off after dentist on Monday. So very minimalism.
     
  12. biophile

    biophile Places I'd rather be.

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    No worries. Took me 3 days to write the post, so I don't expect rapid detailed replies on this forum!
     
  13. EllenGB

    EllenGB

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    There appears to be no way I can pace through dentist and doctor's appointments. Always feel ill later. All those chemicals? That and wifi from neighbours. Brain feels fried. NB. Find most colleagues relatively inadequately trained. Did note this to BPS. As a psych, I can't get on well with colleagues, for that reason. But it's lack of knowledge. If they knew what I knew, life would be easier. Can't make excuses for PW. He knows and ignores. As a scientist, I find that unacceptable. If you check PACE trial and study numbers, you do wonder why he included those with inadequate treatment and the drop outs. Don't we need to know the effect of those who actually completed and adhered to the programme? We don't. Am I being a bit elementary? A table in the appendix has data for a smaller group. One day, when I feel better, I'll compute Cohen's D for them. Mind you, who had ME? (He did not use any version of the London criteria). The LC ME group could not have had any psych disorder, they are excluded, so that would have been one major difference between them and the others. He doesn't mention differences, ergo: he did not use criteria for ME (new ones better.) That and he lists the criteria and I don't recognise them. they ain't anything I had to do with. Bad science to hijack terminology for something different. Glad I retired, sort of. Just want to write up subset who tend to die. Docs don't know they exist. Seeing more and more though numbers still very small.
     

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