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Disability-Associated Deconditioning Sydnrome

Discussion in 'Other Health News and Research' started by oceanblue, Jun 29, 2012.

  1. oceanblue

    oceanblue Senior Member

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    Effects of Disability-Associated Low Energy Expenditure Deconditioning Syndrome, Rimmer 2012

    The theme of this paper might sound familiar: how sedentary behaviour can lead to deconditioning, making activity harder and so a vicious cycle is set off leading to more disability.

    Actually, there are some interesting ideas in this piece, and I particularly the fact that it is clear this is a hypothesis and not a complete explanation for disability. It also proposes some novel ideas for very low-level activity using virtual reality games.

    Abstract

    People with neuromuscular disabilities have high rates of sedentary behavior predisposing them to severe deconditioning and significant health risk. We describe this as disability-associated low energy expenditure deconditioning syndrome and propose new approaches for promoting light-to-moderate intensity physical activity in people with disabilities.

    The easiest way to explain the basic idea, and it's similarity with some models of CFS, is this diagram summarising a model presented in an earlier paper by the same author:

    deconcycle.jpg
    reproduced with permission. The full original article with diagram (fig 1) can be found here.

    So essentially this is the same loop that some people (including the PACE authors) believe is responsible for perpetuating CFS - at least that was the explicit rationale for the GET programme. It looks very plausible and no doubt is true to some extent, but there is virtually no evidence out there that has demonstrated deconditioning has an important clinical effect.

    Some key quotes from the 2012 Rimmer paper (note the caveats throughout):
     
  2. August59

    August59 Daughters High School Graduation

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    I agree that there can be some deconditioning, but that should only lead the inability to do less than you could before. There should not be any pain or PEM generated by just deconditioning. Getting back in condition too should not be a terribly hard thing to do if you do not have ME/CFS. Muscles are much easier to recondition than they are to do the initial condiotioning, sort of like blowing up a baloon the second time as it is always easier. Now granted this does not take in to consideration someone being many years older and possibly developed some arthritis during those years.
     
  3. Sparrow

    Sparrow Senior Member

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    I can see why they're interested in this, but I don't believe at all that this is a primary factor for us. Honestly, I don't see anybody mistaking severe illness with lack of physical fitness. I think humans are pretty good at telling the difference between those.

    I dislike the implication that being out of shape could impose this level of limitations. The effects of being out of shape can be overcome and pushed through. I pushed to the edge of my fitness level plenty of times when I was well, and I (like most of us) tend to live far TOO much at the limits of my capabilities now. We all keep going when it's hard, don't we? I'm chomping at the bit to push further, harder, more, and to regain the activities I used to have in my life. Not being as fit as I once was has nothing to do with why I do less now than I did once. Symptoms or minor discomfort in the moment can be easily ignored.

    Personally, I don't do less because it takes "more effort" or is physically taxing in a "normal" way. I do less because if I don't, I get slammed the next day like a mack truck full of plague has run over me. ...And then backed up. ...And then run over me again, just to be sure.

    Granted, it's been a while since I was actively involved in an intense exercise program, but I don't recall that being a normal side effect of being out of shape. ;)
     
  4. Ocean

    Ocean Senior Member

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    I agree. Plus for those who suddenly became ill, deconditioning can't really be used to explain symptoms. Not really possible to become deconditioned overnight.
     
    WillowJ likes this.
  5. WillowJ

    WillowJ Senior Member

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    it's also odd to me that they include excess body fat in their rationale. Some people with musculoskeletal diseases become overweight, but some don't. Some of us are underweight (I know of people with other diseases who have fine or sub weights, too). I have to wonder how much data gathering they have done.
     
  6. Sparrow

    Sparrow Senior Member

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    Yeah. I'm definitely not overweight. Have lost weight since becoming bed bound, not gained it.

    As another obvious point against, why on earth would I have been vastly worse off last year when I hit bottom (suddenly, as Ocean brought up), and then now be getting gradually better with time, when I've been bed bound this whole time? According to their diagram, if my level of conditioning was responsible for keeping me ill, I should be getting progressively worse or at least be staying the same.

    I can see where their theory is coming from, but once you look at any of the details, it doesn't add up in the slightest. It feels to me like nobody bothered to look closely at the patients they're talking about.
     
  7. biophile

    biophile Places I'd rather be.

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    The above model is similar but places emphasis on perceived effort as the main limiting factor? However, the cognitive behavioural model of CFS, also outlined in the PACE manuals, places more emphasis on maladaptation to what we perceive to be PEM. It basically attributes PEM to the "normal" effects of unaccustomed exercise eg delayed onset muscle soreness (DOMS) etc, and even considers this to be a good sign of adaptation (if not overdone to the point of reducing function). Proponents claim that CFS patients become fearful of PEM and misinterpret it as evidence that all activity is harmful or a sign of disease pathology. So the supposed "vicious circle" for CFS is between initial symptoms > activity avoidance > deconditioning > increased symptoms and PEM > fear > further activity avoidance and boom-bust / all or nothing behaviour, and so on. Other factors are considered too but those are the main activity-related ones comparable to the model described above in oceanblue's initial post. This is why CBT/GET is aimed at first regulating activity to make it more consistent, then gradually increasing activity. Of course, there is evidence that the role of boom-bust is massively overstated, CBT/GET fails to increase activity, PEM is indeed an abnormal response to activity, while patients can distinguish between DOMS and PEM.
     
    oceanblue likes this.
  8. WillowJ

    WillowJ Senior Member

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    but we have some amount of evidence indicating pathologies which could be causing our perceived difficulty in exertion. meaning, it's more likely an accurate perception, and attempting to modify it could well be an exercise in constructing an alternate reality (something psychiatrists generally perceive as pathological).
     
  9. alex3619

    alex3619 Senior Member

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    Hi WillowJ, I think that many psychs are happy with altered reality as long as it solves a perceived problem. Look at massive overmedication with mood drugs in nursing homes. A quiet patient group means problem solved - for the psychs. Maybe they should bring back lobotomies? That would be consistent.

    The paper is on a site which has my security system light up like a Christmas tree - heavily red flagged. So I do not have the full paper. Deconditioning would be an issue for many with disability. In our case we the PEM/PENE from ME is known to induce problems that deserve special consideration. However once we understand more I are reasonably certain that carefully tailored exercise will be used to treat ME, though it will not be considered rehabilititative.

    It should be kept in mind that this paper does not seem to say exercise is rehabilitative, only that it prevents additional complications.

    Bye, Alex
     
    WillowJ likes this.
  10. GracieJ

    GracieJ Senior Member

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    I agree with parts of this, and then vehemently DISAGREE with the rest, but am glad to see someone thinking about the issue. Any conditioning activity has to be something that will build, not tear down. In our case, too many things tear down. At the same time generally speaking, it only takes three days for muscle tissue to begin to atrophy. (From clinical studies in massage therapy outcomes, sorry, do not have the exact reference.) My attitude early on with the illness while still not diagnosed became a somewhat facetious, tongue-in-cheek Move or Die, as I watched others diagnosed with either CFS or FMS fold up and get old way too quickly. My activity level, quite frankly, was often less than five minutes, sometimes only about 30 seconds. But I kept right on trying. I could tell when it was bad for me to do that, and would quit, wait a few months, and try again. I did this many times, trying to rebuild some stamina and strength. (This was before I trained in massage therapy.)

    I was working with the elderly at one point as a massage therapist, and was given the task of encouraging healthy activity for them. As some were stroke patients, others just very, very weak from old age, we did the most simple little exercises, rotating a foot, rotating a shoulder, just the barest little movements. The light bulb went off for me... and from there began the simplest, most basic rehab program for me that I had ever done. I do believe it has played a role in my functional level over time.

    I am very much against almost any extra, unnecessary physical activity in bad cases of ME/CFS, and even with massage, do not go there. Some things just plain hurt and the timing is wrong. I'm with Alex on his phrasing, "carefully tailored exercise." I've seen stroke patients improve with just the tiniest bit of movement daily, and would love to see a study on that. One woman who followed this regime regained her ability to dress herself. It was amazing, and she was so happy. Please don't go off on me now... just sharing an example of very low level rehabilitation work. I think CFS may prove similar, very slow, very low effort small movements, not to get anyone on their feet again, but to keep some level of healthy muscle tone. Also, that small success is such a boost to morale. I would see the very old break out into smiles that they could still wiggle their toes.

    The application of this theory to us, I believe, is to see that there are ways to prevent muscle atrophy and some secondary energy issues arising from CFS -- or any other withering disease -- without killing ourselves off trying to please someone else with an exercise regime.

    Simple oxygenation of the tissue is an important piece -- most can still practice deeper breathing.

    Then again... for worst-case scenarios, this is all just academic. I wouldn't ask some of my dear friends that are bedridden to even try wiggling their toes. Not worth it.
     
  11. GracieJ

    GracieJ Senior Member

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    Just to clarify... I do believe that inactivity can lead to deconditioning, but do not believe for a minute that that deconditioning then creates a snowball effect of symptoms and further deterioration as outlined. Just doesn't wash at all. Deconditioning is just one more piece of any chronic illness. Does anyone with cancer have worse cancer because they were bedridden for weeks or months??
     
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  12. Snow Leopard

    Snow Leopard Senior Member

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    In the CFS case, this deconditioning doesn't at all explain our brain fog, nor our activity related headaches. (and many of us have had a continuous headache for as long as we have had CFS)
     
  13. Valentijn

    Valentijn Activity Level: 3

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    I wish someone would test the deconditioning theory of ME properly. Maybe one group staying at their normal activity levels, and one group becoming almost completely inactive (only off the couch/bed X minutes per day, etc). Monitor both groups for a bit with actometers to make sure they're at the proper level of activity, then see how each group performs at certain physical activities after a while. Maybe even compare it to prior performance.
     
  14. Sparrow

    Sparrow Senior Member

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    I struggle with my opinions on this kind of thing a lot. On the one side, I feel like some decently conducted research into deconditioning, GET, etc. would put that side of things to rest for once and for all, and that would do us all a great service in speeding up research into other areas. But at the same time, I HATE the thought of one more penny going into psychological research into this condition. Part of me feels like even engaging in the argument lends it credibility that it really shouldn't have.
     
  15. oceanblue

    oceanblue Senior Member

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    I think it's worth repeating that this model is specific to those with neuromuscular disorders rather than CFS. However, as I said in the first post, this paper presents no good evidence presented that deconditioning has an important clinical effect.

    biophile
    Good point, though as you and others say, generally the reaction to exercise in CFS is different to anything most us have experienced either when healthy or ill with other problems.


    alex3619
    They are saying that exercise can improve function rather than simply halt decline, but not saying that it leads to recover

    Valentijn
    I do too.

    Snow Leopard
    Evidence on deconditioning and cognitive problems coming up shortly in the General deconditioning thread [in short, there isn't any].
     

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