Royal College's Report on CFS (1996)

[worldbackwards]

Does 'deconditioning' have any physical basis?

Whenever I've seen deconditioning come up, it's usually addressed in a vague way to dismiss biomedical findings eg deconditioning has physical effects that we don't know much about, ergo that must be it. There has, as far as I know, never been any attempt to address what these effects might be or how they might impact upon the illness.

My suspicion is that deconditioning is such a convenient place to hide anything you don't want to know about, that it remains convenient for little to be known about it.

 

[Valentijn]

Does 'deconditioning' have any physical basis?
Is the claim that this is purely due to physical inactivity as in someone who's been doing bed rest, and normal responses to exercise - delayed onset muscle soreness et al?

The effects which he's attributing to deconditioning are far too severe for the reduced level of activity experienced by most patients. To experience OI from deconditioning, healthy controls have to literally lay in bed all day for a month or more with minimal movement. Most ME patients can at least sit up much of the day, and mild patients can even work full time, but will often still have significant OI.

It also requires ignoring whether the reduced activity came before or after the OI. Most patients report that it's OI (and PEM) which force them to become less active, not that they became less active and suddenly developed OI. The egRegius Sir Wessely's hypothesis would also require that decreased activity results in greater incapacity - yet many patients report that when forced to be inactive due to OI flares, or engage in aggressive resting, their OI and PEM thresholds actually improve afterward.

Additionally, deconditioned healthy people very quickly regain their previous level of conditioning. We're talking about weeks, versus the months or years the psychobabblers claim "deconditioned" ME patients will need. And if it was merely deconditioning, GET would show increased activity - whereas actometers and other objective measurements show no such improvements.

DOMS (delayed-onset muscle soreness) is a different issue regarding PEM, but used by psychobabblers in a similar hand-waving dismissal. In that case, they are equating the entirety of PEM to a hysterical reaction to DOMS. To do that they are ignoring about a dozen symptoms and choosing to focus on pain. But even their focus on pain ignores that DOMS is localized to the over-worked muscles and only when being used again, while PEM pain is more of a fully body experience and doesn't require to use the muscle for it to hurt.

It's pretty rare for physical therapists to promote these ideas, especially in a research setting, simply because they don't make sense. Hence it's almost entirely psychologists inventing vague theories to explain objective physical signs detected in patients, such as OI and CPET results.

 

[A.B.]

The deconditioning hypothesis is already dead by the way. CPET research has objectively demonstrated that exertion results in decreased physical functioning, while the opposite would be expected, even in those severely deconditioned. But Wessely et. al. simply ignore biomedical research they don't like.

There was also this NASA experiment where they kept a person immobile for months, until he was seriously deconditioned. It took him a few weeks to get back to normal. In PACE, after 15 sessions with a GET therapist and a year of trying to improve their activity levels, patients still had no meaningful improvement on the six minute walking test. There was a little improvement, but that may just have been the result of the 30% drop out rate (the more ill patients were more likely to drop out, which would increase the average walking distance of the rest).

 

[Glycon]

Mostly he seems to acknowledge it exists in ME patients, but that it's solely the result of deconditioning. But I don't see anything about it after 2003 - maybe he found it more convenient to pretend it didn't exist, since he pretty blatantly didn't know WTF he was talking about

Say what you will about Wessely, but his chutzpah is truly God-Tier!

About deconditioning: It is obviously not the root cause of any ME-specific symptoms, but it is a real problem. It's not just that exercise is bad, but that there may not be a happy equilibrium that would allow avoiding the harm of deconditioning and the harm of exercise. I have a hunch that this has a lot to do with some people's condition deteriorating over time in spite of them carefully pacing themselves.

Just because something plays an exaggerated part in the psychological account of CFS people shouldn't ignore it.

 

[Valentijn]

About deconditioning: It is obviously not the root cause of any ME-specific symptoms, but it is a real problem.

Compared to PEM and OI, deconditioning is an insignificant problem. Trying to solve it with any exercise program simply makes everything worse.

Just because something plays an exaggerated part in the psychological account of CFS people shouldn't ignore it.

Ignoring it is the healthiest thing we can do until our condition improves enough that we can safely become more active.

 

[Glycon]

Compared to PEM and OI, deconditioning is an insignificant problem.

I never said that it wasn't.

Trying to solve it with any exercise program simply makes everything worse.

This is true, but irrelevant to the point I'm trying to make.

Ignoring it is the healthiest thing we can do until our condition improves enough that we can safely become more active.

Not necessarily. While it is best to err on the side of caution, it isn't clear that those who can maintain some level of activity witout going beyond their limits, don't benefit from doing so. I'm not talking about someone with severe ME pushing themselves. But if someone with mild ME confines themselves to bed out of excess caution, it could well be detrimental to their overall health. (Keep in mind that your health isn't just the severity of your ME symptoms and that ME, being a multisystem illness, can be expected to interact bidirectionally with many other health problems.)

 

[Valentijn]

But if someone with mild ME confines themselves to bed out of excess caution, it could well be detrimental to their overall health.

Except this is a completely hypothetical situation which does not exist in the real world.

 

[Glycon]

Except this is a completely hypothetical situation which does not exist in the real world.

You're mistaken, I'm afraid.

Just because many more people have the opposite problem, doesn't mean that the one I described isn't real.

 

[Valentijn]

Just because many more people have the opposite problem, doesn't mean that the one I described isn't real.

Where's the evidence of it?

 

[Glycon]

Where's the evidence of it?

Not sure what evidence you would like to see, but... Are you seriously suggesting that no one who has ever become ill with (mild) ME/CFS has over-reacted to their symptoms?

 

[Valentijn]

Not sure what evidence you would like to see, but... Are you seriously suggesting that no one who has ever become ill with (mild) ME/CFS has over-reacted to their symptoms?

I'm saying that I think it's extremely unlikely, and that no one has ever presented evidence of such a thing happening.

 

[Glycon]

I'm saying that I think it's extremely unlikely, and that no one has ever presented evidence of such a thing happening.

Ok... What about this makes it "extremely unlikely"?

What makes you confident in making extremely sweeping claims like "no one has ever presented evidence..."?

 

[Valentijn]

Ok... What about this makes it "extremely unlikely"?

Because there's been no reports of it happening. And people don't want to be that inactive - our bodies drive us to maintain some activity, which can be especially distressing when that activity will make us sicker.

What makes you confident in making extremely sweeping claims like "no one has ever presented evidence..."?

I can't prove a negative. If you want to argue that it has happened, it's on you to prove it.

 

[RogerBlack]

People respond differently to their CFS/ME.
This is due to many factors.
Being instructed that GET is a cure.
Being unable to avoid heavily fatiguing activities.
Being unwilling to avoid them.
Having someone encourage them to rest all the time (yes, it happens).
Doing that on their own initiative.

The notion that people with CFS/ME automatically know what will best result in their condition stabilising or improving is almost as silly as GET.

There have been limited to no proper studies on this - and it seems clear that some approaches are clearly bad (encouraging vigorous exercise, CBT for physical symptoms).

What you'd really need at minimum is unfortunately horribly complex - either a large observational trial with actiometers and a 'how fatigued are you', 'why did you stop moving' buttons, or a clinical trial lasting several months in-patient with challenges and various approaches with hundreds of people.

Self-reports may not be that useful, if you want to actually work out what is the best course for someone to follow. They may work somewhat for finding what causes crashes.

 

[FancyMyBlood]

Agree with Valentijn here. While in theory Glycon's hypothesis sounds plausible it baffles me that PACE's et al. results are that bad considering their loose inclucion criteria. Surely those kind of 'patients' should respond to these interventions yet even then the 'results' are piss poor.

 

[RogerBlack]

Agree with Valentijn here. While in theory Glycon's theory sounds plausible it baffles me that PACE's et al. results are that bad considering their loose inclucion criteria. Surely those kind of 'patients' should respond to these interventions yet even then the 'results' are piss poor.

The set of patients who are avoiding all exertion may be unwilling to try GET/APT, and may be more disconnected from their doctors, and less likely to be in ME/CFS clinics, hence not eligible for trials.

(whether or not this set of patients would benefit from more activity in some cases is an unanswered question)

 

[flybro]

If it was deconditioning, I should never have got ill, when I did.

Also I tried to eat, drink and exercise my way back to 'health' using 'mind over matter', and guess what? I got much worse, very quickly.

Nearly always feels like an immune response when i do push the envelope. I get increased flu symptoms, and often increased insomnia, which seems so counter productive.

 

[RogerBlack]

If it was deconditioning, I should never have got ill, when I did.

Quite. I was just wondering if there was any science behind the bald 'deconditioning' - which seems to be almost White et al thinking 'Oh - I got sore after a run once, that must be it', without any further research into actual deconditioning.

 

[Glycon]

Because there's been no reports of it happening. And people don't want to be that inactive - our bodies drive us to maintain some activity, which can be especially distressing when that activity will make us sicker.

So are you saying that no hypochondriac has ever become ill with mild ME/CFS? Like... Do you realize what the odds of that are?!?!

I can't prove a negative. If you want to argue that it has happened, it's on you to prove it.

Proving a negative is nowhere near as difficult as people on the internet often seem to think it is...

 

[A.B.]

I am very skeptical about the idea that anyone could truly harm themselves by deciding to rest far too much. Resting more than what your brain thinks is appropriate means going against your instincts every day. It is a form of abstinence from pleasure and takes a lot of willpower.

I constantly hear patients say they overdid. Patients that have independently (without CBT/GEt therapist planting this idea in their head) arrived at the conclusion that they did harm their health by resting too much basically are as rare as unicorns.