CFS patients have no reason to accept the PACE trial results: Response to Keith J Petrie and John We

[Barry53]

Ah but in our culture lies have a life of their own, many think if you believe a lie strongly enough it becomes fact

And they indulge in that special form of lying, lying by omission. Partial truths can infer powerful lies. And they mix partial truths to conflate issues and compound their lies to create more confusion and create the illusion of truth. But such liars convince themselves, and confuse others into believing, that because what they have said insofar as it goes is the truth, they have not therefore lied. They do it over and over and it is another classic abusers' head-messing trick. I'm so looking forward to seeing these people having to eat their own ugly words. It's why if they ever get into a court of law or formal enquiry they will be utterly stuffed, where they will have to tell the truth, the whole truth, and nothing but the truth. The latter two clauses will completely flummox them.

 

[Dolphin]

https://twitter.com/i/web/status/889660660166127616

 

[Deepwater]

Strictly speaking, the results show that if patients are deconditioned, then CBT and GET are not effective treatments for that deconditioning.

Which is not the same as disproving deconditioning, though it certainly offers no support for it either.

Problem is that they have never properly tested that rather critical assumption of deconditioning, and empirically verified that patients are, in fact, deconditioned (significantly more than otherwise healthy sedentary people).

They could have saved themselves a lot of embarrassment and trouble if they had.

Exercise cures deconditioning because deconditioning is loss of strength and fitness due to lack of exercise. When people who are merely unfit exercise, they get fit. So if exercise fails to make people with CFS/ME fit there must be something else going on that is preventing their bodies from working properly. Hence I would agree that the results of PACE do warrant the rejection of the deconditioning hypothesis.

 

[RogerBlack]

Exercise cures deconditioning because deconditioning is loss of strength and fitness due to lack of exercise. When people who are merely unfit exercise, they get fit. So if exercise fails to make people with CFS/ME fit there must be something else going on that is preventing their bodies from working properly. Hence I would agree that the results of PACE do warrant the rejection of the deconditioning hypothesis.

Weeeel.

Taking the devils advocate position, I am unsure if the people in PACE actually did anything which would (from a classical exercise physiology point of view) condition them.

If during GET, you do not comply, or you offset other parts of your activity for the GET activities, then you can not in any manner be 'conditioned' from an exercise physiology POV, so the PACE trial is only useful for proving deconditioning is not a reasonable hypothesis to the extent you believe that the activities done during PACE should have conditioned patients.

 

[Deepwater]

Weeeel.

Taking the devils advocate position, I am unsure if the people in PACE actually did anything which would (from a classical exercise physiology point of view) condition them.

If during GET, you do not comply, or you offset other parts of your activity for the GET activities, then you can not in any manner be 'conditioned' from an exercise physiology POV, so the PACE trial is only useful for proving deconditioning is not a reasonable hypothesis to the extent you believe that the activities done during PACE should have conditioned patients.

Weeeel.

Of course I speak not having done GET, but should we not be distinguishing activity and exercise?

The activities done during PACE were intended to condition patients, even those doing nothing else at all, because these activities were forms of physical exercise and were being gradually increased throughout the programme.
I guess most members of the patient group who were working must have had sedentary jobs, so even if they had given those up right at the start in order to manage the GET exercise programme you would still expect to see an improvement in their physical condition. Same goes if they had not been working but had cut down on sedentary social activities in order to manage GET. Had there been improvement in condition, though, we would surely have been given measured results.
But it is unlikely in any case that patients would have given up other activities immediately in order to cope with the expected pressures of the programme, because they had been promised it was going to make them well. It is not usual for deconditioned people starting to get fit to have to give up their jobs, seeing friends or doing the laundry. This is an abnormal sign.
But yes, I take your point that maybe the whole programme was so haphazardly conducted that it would be impossible to demonstrate scientifically that the patient group - or many of them - were incapable of improving their energy levels and capacity through exercise.