Investigating the origins of GET (graded exercise therapy)

[Barry]

Deconditioning is not common in ME anyway. While all this was going on, none of them actually asked patients if they were deconditioned (or even what their coping styles were). It was assumption after assumption. They said what they assumed to be true about patients, then stated what they assumed would fix it.

Yes, I've realised for a long time that whatever my wife's problem is, it most certainly is not normal deconditioning. Even if ME does turn out to be anything related to deconditioning, then it will be a form that cannot possibly be exercised out of, though I very much doubt it will be that anyway.

 

[Dr Carrot]

Deconditioning is not common in ME anyway. While all this was going on, none of them actually asked patients if they were deconditioned (or even what their coping styles were). It was assumption after assumption. They said what they assumed to be true about patients, then stated what they assumed would fix it.

Can we really say that deconditioning isn’t common in ME?

Anyone who is bedbound will have all the negative effects of deconditioning, and it’s likely that most people with ME who are anything except mild are incredibly unfit and sedentary.

Deconditioning has nothing to do with why I’m sick and I can’t prevent it, but I’m surely suffering the ill effects anyway.

 

[Barry]

Can we really say that deconditioning isn’t common in ME?

Anyone who is bedbound will have all the negative effects of deconditioning, and it’s likely that most people with ME who are anything except mild are incredibly unfit and sedentary.

Deconditioning has nothing to do with why I’m sick and I can’t prevent it, but I’m surely suffering the ill effects anyway.

Agreed. My wife is mild/moderate ME and able to do enough I believe to have forestalled any deconditioning. She is also highly motivated to always push her limits, whilst sensible enough to pace herself (almost ) sensibly. She is actually quite physically fit, except she does not have the available energy needed to make best use of that.

 

[Webdog]

Here's what the Workwell Foundation says about deconditioning and ME/CFS:

ME/CFS is not deconditioning nor are its symptoms explained by inactivity. It is a complex, multi-system disease involving neurological, immunological, autonomic, and energy metabolism impairments. The debility in ME/CFS is much greater than is seen with deconditioning.

http://www.workwellfoundation.org/w...T-Letter-to-Health-Care-Providers-v4-30-2.pdf

 

[Snow Leopard]

Can we really say that deconditioning isn’t common in ME?

Anyone who is bedbound will have all the negative effects of deconditioning, and it’s likely that most people with ME who are anything except mild are incredibly unfit and sedentary.

Sure, but the key is that deconditioning does not explain the symptoms of most patients.

 

[Barry]

Here's what the Workwell Foundation says about deconditioning and ME/CFS:

http://www.workwellfoundation.org/w...T-Letter-to-Health-Care-Providers-v4-30-2.pdf

Which was why I said "anything related to deconditioning", not "deconditioning". I'm no expert, but I do know that some serious illnesses have close similarities to other much less severe illnesses. I was just pondering (nothing more) if, when the underlying cause(s) of ME are understood, it might be found that the physiology of it may share something with deconditioning, but of a form that makes it impossible to exercise out of. I am confident my wife does not have any conventional form of deconditioning.

 

[Dr Carrot]

Sure, but the key is that deconditioning does not explain the symptoms of most patients.

Yes - I was just saying that it seems wrong to say that ME patients are not deconditioned and likely suffering the adverse effects of that, in addition to the symptoms of ME.

 

[Mithriel]

Only 25% of sufferers are house or bedbound and I agree that their illness will be exacerbated by inactivity, but for the rest it is different.

To overstate it a bit, if you have a very inactive lifestyle you are unlikely to get PEM and that does not fit with most people with ME who continually do more than they should. During the epidemics, it was the active people who became ill. One was in a teacher training college set in a convent. The students became ill, the contemplative nuns did not. There is a certain truth to the idea that people who get ME are the ones who push themselves.

My experience of moderate ME may not have been typical of sufferers now as we did not know so much then but I found it much easier to walk than to make the complicated actions to use public transport and could not drive a car because of sudden onsets of paralysis. I did much more than the government guidelines. Friends with ME at the time also lived an active enough lifestyle in that they worked but spent the evenings and weekends resting.

I seem to remember reading somewhere that people with ME do not show the muscle wasting that would be expected - it might have been during the outrage over the DWP description that severe ME could be identified by muscle wasting since it is so uncommon. Fitness in the muscles comes because damaged mitochondria give a signal when there has been too long spent in anaerobic respiration (the burn). It is possible that this signal is given in ME so we are fitter than might be expected.

 

[Barry]

Only 25% of sufferers are house or bedbound and I agree that their illness will be exacerbated by inactivity, but for the rest it is different.

To overstate it a bit, if you have a very inactive lifestyle you are unlikely to get PEM and that does not fit with most people with ME who continually do more than they should. During the epidemics, it was the active people who became ill. One was in a teacher training college set in a convent. The students became ill, the contemplative nuns did not. There is a certain truth to the idea that people who get ME are the ones who push themselves.

My experience of moderate ME may not have been typical of sufferers now as we did not know so much then but I found it much easier to walk than to make the complicated actions to use public transport and could not drive a car because of sudden onsets of paralysis. I did much more than the government guidelines. Friends with ME at the time also lived an active enough lifestyle in that they worked but spent the evenings and weekends resting.

I seem to remember reading somewhere that people with ME do not show the muscle wasting that would be expected - it might have been during the outrage over the DWP description that severe ME could be identified by muscle wasting since it is so uncommon. Fitness in the muscles comes because damaged mitochondria give a signal when there has been too long spent in anaerobic respiration (the burn). It is possible that this signal is given in ME so we are fitter than might be expected.

My wife is mild/moderate. We met in 1977 and she went down with ME around 2007. So I knew my wife a long time before her ME started and have known her a long time after. You are right, my wife always strives to do as much as she can, not as little as she can; that is as true now as ever was, it is only the limits of what she can do that have drastically reduced.

She is able to do enough physical activity that to me seems more than enough to prevent deconditioning. She just cannot do it with the intensity and duration she once could. There must be an activity threshold at which you start to risk deconditioning, my guess is that threshold might be fairly low; I suspect most people with mild/moderate ME operate above that threshold. I think my wife is above that threshold. But of course people who have very limited mobility must risk decoditioning as a secondary complication. You cannot be so severely incapacitated by illness over such a long time and not become secondarily deconditioned surely, it's physically impossible.

 

[Sean]

During the epidemics, it was the active people who became ill. One was in a teacher training college set in a convent. The students became ill, the contemplative nuns did not. There is a certain truth to the idea that people who get ME are the ones who push themselves.

Only relative to their newly acquired reduction in activity capacity. They just have not yet adapted to that new and lower state of health.

There is a difference between people overdoing it because they are too driven, and overdoing it because they are still learning about managing a new health problem that limits activity (and in a rather opaque way).

Also, for cases that start out at the mild or moderate section of the spectrum and still have some capacity, a lot of that over activity is no doubt due to being pushed – and sometimes very hard and unreasonably indeed, to the point of extortion, intimidation, and straight cruelty – by the surrounding medico-psycho-social-economic-political environment, independently of any pre-existing psycho-behavioural traits or imperfections in the patient.

 

[WillowJ]

Yes - I was just saying that it seems wrong to say that ME patients are not deconditioned and likely suffering the adverse effects of that, in addition to the symptoms of ME.

Probably depends which ones. In one study, the ME patients were deemed more fit than their sedentary controls.
Other patients are likely deconditioned as a complication. I expect I am at this point.