Disability-Associated Deconditioning Sydnrome

[oceanblue]

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:

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):

we provide a conceptual framework for understanding how disability-associated conditions lead to high rates of physical inactivity, which in turn result in an accelerated physical decline in people with disabilities...

We propose that a certain percentage (and in some cases, a significant percentage) of the decline in physiological and musculoskeletal functioning observed in people with neuromuscular disabilities is related to a substantial reduction in energy expenditure leading to the clinical presentation of disability-associated low-energy expenditure deconditioning syndrome (DALEEDS)...

Building on clinical consensus that skeletal muscle-related declines in strength and exercise tolerance, accommodated by increases in fat mass, lead to dysregulated energetics, we hypothesize that these physiological changes can be ordered into one of two pathways: Pathway 1, fitness decline; and Pathway 2, increase in cardiometabolic risk factors...

We also hypothesize that either of these two pathways could become self-sustaining and act as independent contributors to the adverse health outcomes listed at the bottom of the figure and, in some cases, may even dominate the clinical presentation independent of its initial cause

the end result is reduced total energy expenditure, which creates a continuous cycle of health risk leading to metabolic/physiological changes that cause further advancements in physical decline across time

 

[August59]

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.

 

[Sparrow]

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.

 

[Ocean]

I dislike the implication that being out of shape could impose this level of limitations.

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]

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.

 

[Sparrow]

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.

 

[biophile]

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.

 

[WillowJ]

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).

 

[alex3619]

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

 

[GracieJ]

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.

 

[GracieJ]

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??

 

[Snow Leopard]

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)

 

[Valentijn]

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.

 

[Sparrow]

I wish someone would test the deconditioning theory of ME properly.

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.

 

[oceanblue]

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

So the supposed "vicious circle" for CFS [according to the CBT model] 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.

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

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

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

Valentijn

I wish someone would test the deconditioning theory of ME properly.

I do too.

Snow Leopard

In the CFS case, this deconditioning doesn't at all explain our brain fog, nor our activity related headaches

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