The CFS deconditioning hypothesis

Sean said:
The Goldilocks theory that patients just don't know how to balance their lives, and need an expert to help them re-learn how to do it all over again.

It is patronising, infantilising, demeaning, insulting, and very dangerous subjective authoritarianism, entirely to justify these 'experts' lust for control and fame.

Talk about complete lack of insight into their own behaviour. I mean, who is the psychologically deficient actor in this scenario?
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I'm not talking about pwME, but I would not be surprised if there are people whose only problem is deconditioning, but very severe, then there may be a tipping point beyond which it may be very difficult to work your way back out of it without help.
 
Barry said:
I'm not sure. Perhaps @PhysiosforME can answer this one? If someone's sole problem genuinely is severe deconditioning, possibly left over from some other physical ailment that has subsequently recovered, is there a level of deconditioning severity that might require extreme effort (rather than just hard work) to get back to a point where just normal hard effort will continue to recondition them? Or is it the case that most people, if only deconditioned - nothing else - can recondition with normal hard work, no matter how deeply deconditioned they are?

Would be interesting and useful to know.

Agreed.
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I have treated people who have been in intensive care for a prolonged period of time who definitely need specific help and guidance in order to return to normal function and people post Guillain Barre syndrome who are extremely weak but these people usually have specific areas of weakness that need specialist input. From my previous physical activity work, even really deconditioned people can usually start with a very small amount of exercise and very gradually increase with no problem. Everyone is an individual is very much my approach!
 
PhysiosforME said:
I have treated people who have been in intensive care for a prolonged period of time who definitely need specific help and guidance in order to return to normal function and people post Guillain Barre syndrome who are extremely weak but these people usually have specific areas of weakness that need specialist input. From my previous physical activity work, even really deconditioned people can usually start with a very small amount of exercise and very gradually increase with no problem. Everyone is an individual is very much my approach!
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[My bold]

Many thanks for this.

One more follow up to this if I may please @PhysiosforME.

Before you got to learn more about ME/CFS, how difficult (or easy) was it for you to distinguish between people who are deconditioned, compared to people with ME/CFS, of varying severities?

Since your having better insights into ME/CFS, how difficult (or easy) is it now for you to distinguish between people who are significantly deconditioned, compared to people with ME/CFS?

I'm especially interested in how superficially similar the two conditions might seem, and if so, what do you have to do to distinguish?

Many thanks.
 
It would also be helpful to have a view as to whether deconditioning could be a plausible explanation for a condition in which variability of symptoms is a major, possibly defining, feature.

If deconditioning were an element of the illness- the one that put the patient to bed- how could recovery ensue without measures having been taken to reduce deconditioning.
 
chrisb said:
It would also be helpful to have a view as to whether deconditioning could be a plausible explanation for a condition in which variability of symptoms is a major, possibly defining, feature.

If deconditioning were an element of the illness- the one that put the patient to bed- how could recovery ensue without measures having been taken to reduce deconditioning.
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Some personal thoughts regarding deconditioning:

  • Getting fit when healthy is achievable with a little motivation and effort:

    EG When I was a healthy (but unfit) school-gate mum, a group of us decided to do the Belfast/Dublin maracycle (200 miles over 2 days). Our first trial run out was only 6 miles and left all of us floored!!

    We trained for 16 weeks, and at the end of that achieved our goals. We trained only 2 or 3 times a week, and did only one long run each week of increasing distance. The final long run was two weeks before the big week-end, and was about 70 miles.

    At no point did we consistently do the same amount each day. On the big week-end, doing so much more than we had ever done before was not a problem. None of us took time off other duties to recover. None of us had anything like PEM after this big event!


  • PEM appears to be more damaging, the greater the severity of ME:

    At least this is my experience. When I was first ill, and also when I was at my worst doing anything requiring effort, caused PEM, which then caused a decline in my ongoing condition.

    Over time I re-evaluated the things that I regarded as being “an effort”. Bear in mind, I was well used to being able to push myself to achieve what I wanted to achieve, in the full expectation that the recovery process would actually increase my stamina and fitness.

    This new paradigm (make effort -> suffer PEM -> become increasingly incapacitated) turned my understanding of “getting fit” on it’s head, and effectively meant I could do nothing that required effort.

    In truth, I had to be so cautious about making any effort, that I rarely felt “tired”. At the first hint of effort, I learned to stop pushing on. Feeling “fatigued” was not the problem!


  • When my ME level improved, it was easy to reverse some of my deconditioning:

    It is no secret that I took a drug that changed my basic severity level. (I got lucky, so I’m not recommending.) Anyway, I had improvement, but not immediately. About 4 months in, and over the period of just a couple of weeks, something changed!

    PEM reduced dramatically, and I could once again do things requiring some effort, and not suffer afterwards.

    My time being being so physically restricted had obviously left me deconditioned, but as I started to use my increased physical ability, so my body adjusted and I became fitter. I was very excited about this, and the increase was “easy”, but sadly it quickly became clear that I had a new ME limit. That limit still remains (with some variations) to this day.

    I cannot get any fitter than I am now. Increasing effort above a certain level is “not a good thing”!! I am still “deconditioned” if compared to the healthy person I was prior to ME, but not as severely deconditioned as I was prior to my treatment.


  • An inability to increase fitness (condition) seems to define ME.

    Now I know we ME peeps can tweak little things and so spend our energy budgets more usefully, but I think changing our actual ME level is not attainable through valiant effort. (Actually we are only likely to make it worse, by trying to make it better!!)

    I think the GET paradigm suggests that some of us become too cautious, and therefore don’t notice when we have an increased capacity?

    Really? Is that actually likely? I think we all need to leave a little bit of a safety buffer between our usual activity and that which harms us, but I certainly “noticed it” when my condition improved! It was like a brake being released!! It was like being given a pay rise! And I was happy to “spend” it!


  • Now that I am mild/moderate, I feel more fatigue, even though I am in better condition physically.

    Basically, I can now make more effort, and although I still get PEM, it is less likely to also lower my ongoing ME level. And because of this, I now occasionally do things requiring effort. After effort I still reach a state where I have some PEM, but it is not as damaging long term, so I don’t actively avoid it as much.

    However I now experience fatigue, in a way that I didn’t when I was more severe. I suspect fatigue is my body warning me to be more careful!

    So in my view deconditioning is a direct result of reduced activity due to the problem of ME. Only a release of ME allows re-conditioning. (But you all agree on that! ;) )
 
Keela Too said:
Should have said - Good points @chrisb .... I know I didn’t really answer those points, but just went off on my own deconditioning ramble.

I agree though, the logic that ME is caused by deconditioning simply doesn’t hold up.
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From my own experience of brief bouts of childhood illness where I would be left too weak to stand and from playing seasonal sports where you have to train up at the start of the season I completely agree with the points you made.

The deconditioning argument never stacked up.

This situation where the onus is placed on a group of very ill, generally impovrished patients to refute a hypothesis that was never adequately proved by researchers who had good health and millions of pounds at their disposal is absurd.
 
Invisible Woman said:
The deconditioning argument never stacked up.
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This is the point. It is perfectly understandable that someone with insufficient general experience of such cases might come up with such a hypothesis. Any reasonable person would look at the cases displaying variability of symptoms and conclude that they should look for an alternative explanation. If Wessely and Sharpe et al were only seeing cases in which variability did not occur then their theories might have been excusable but they have always insisted that their patients were absolutely typical and they were not seeing a different sub-group. They cannot have it both ways.
 
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Barry said:
[My bold]

Many thanks for this.

One more follow up to this if I may please @PhysiosforME.

Before you got to learn more about ME/CFS, how difficult (or easy) was it for you to distinguish between people who are deconditioned, compared to people with ME/CFS, of varying severities?

Since your having better insights into ME/CFS, how difficult (or easy) is it now for you to distinguish between people who are significantly deconditioned, compared to people with ME/CFS?

I'm especially interested in how superficially similar the two conditions might seem, and if so, what do you have to do to distinguish?

Many thanks.
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This is a great question and I'm going to check with the other three. I actually think this is something we need to work into our information for physios. I'll come back to you v soon!
 
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