'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

It could be that the illness model is correct but the therapists are incompetent!

If deconditioning was a key factor in the perpetuation of CFS I think it's reasonable to expect much better results for GET. The cognitive models all seem more amorphous and harder to say anything much about. I don't see any good reason to think that they're a valuable way of understanding CFS.
 
strategist said:
Do we know if the PACE authors believe that mere bias (placebo effect) is enough to cause improvement in health?
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Given the PACE authors believe the illness is wholly due to people's unhelpful beliefs needing to be changed, then absolutely anything that helps modify those beliefs will be deemed effective treatment. Based on that illness model, then what normal scientists call bias, psychs will consider as treatment. If they were right about the illness mechanism being a psychological one, then they might have a point ... but they are of course ludicrously wrong. To me it illustrates what a world of difference there is between medical science and psychiatry.
 
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Esther12 said:
It could be that the illness model is correct but the therapists are incompetent!
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Well, it's always possible to find a reason why the test you failed was unfair. That's not difficult to do. But the fact that the PACE-authors were allowed to set up the conditions of the experiment (Oxford criteria, Chalder fatigue scale etc.) and were given exceptional resources to do so (5 million pounds, a multi-center trial, 640 patients etc.) will make such post-hoc explanations very unconvincing.

Also: the PACE-authors aren't making this excuse, quite the contrary, they wrote (Cox et al. 2013)
"It is acknowledged that the amount of training and supervision provided within the PACE trial was expensive and time consuming, and would be unlikely to be available in routine clinical practice."
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I also think it is fair to say that this was part of their model; the idea that the deconditioning and false illness beliefs that are perpetuating disability in ME/CFS patients, are reversible with exercise and psychotherapy.

They could argue that ME/CFS is perpetuated by deconditioning and false illness beliefs that are not reversible, not even with specialized psychotherapy and exercise therapy by trained therapists at an intensity that is unlikely to be available in routine clinical care. I would say, good luck with that...
 
strategist said:
PS: I probably took the opposite view on this a while ago. It's hard to wrap one's mind around it. That the illness model is not well defined doesn't help either. Do we know if the PACE authors believe that mere bias (placebo effect) is enough to cause improvement in health?
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I'd just like to point out that the placebo effect is much more limited and specific than the range of biases that can affect subjective self report outcomes. A "placebo controlled trial" is blinded to control for more than just the placebo effect.
 
Lucibee said:
It's a good article.

One issue for me is the use of the term "consumer". I know this is a Cochrane thing (well, that's me told anyway), but part of the issues stem from terminology that divides people into groups or "camps", when in reality these groups are fairly fluid.

It is also the fact that a self-appointed authority group gets to decide what other parties are called, without much in the way of negotiation on the issue.

Do you feel like consumers (even healthcare consumers)? Or is the lack of access to adequate healthcare in this field a disqualifying factor here?

I'm not a "consumer". I wasn't initially an "activist" either. I can't even be a proper "advocate" - you're all perfectly able to speak for yourselves!
I'm no longer an "academic" or a "researcher" - although I'd like to get back to that - if any institution would ever have me back.

Guess I'll have to stick with the term "unemployed troublemaker"!
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How about being called a client instead of ‘patient’? Client terminology is used in psychiatry. It also implies a transaction where the ‘client’ requests a service and the service is delivered. In the smorgasboard of services, you have access to a physio, group therapy, acupuncture, dietician, naturopath and more group educational sessions, none of which the said ‘client’ requested.

It gets complicated to access care.
 
Esther12 said:
Surprised to see Trish Groves promoting this. Shows that Bastian is able to reach people that would normally reject us out of hand.
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Very much this - Bastian have an out-reach to people we normally can't get to listen. Still didn't expect anyone from "the outside" to promote this. There are som rather harsh judgement of people that usually have closed ranks.

I'm sure Bastian is in for a busy week with private communications - and she knew very well what she was getting herself into. And did it anyway

Others that re-tweeted without own comment:

PLOS
deborah pm - Editorial director evidence based healthcare at Wiley, 'cochranite'

Wiley have the plattform for the cochrane library
 
Michiel Tack said:
I also think it is fair to say that this was part of their model; the idea that the deconditioning and false illness beliefs that are perpetuating disability in ME/CFS patients, are reversible with exercise and psychotherapy.
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The more I learn the less clear I become about what is meant by "deconditioning" in this context. The concern is that those who use the term may be equally unaware and switch between uses without any understanding of what they mean in any particular statement. It would help if ambiguity could be eliminated by careful definitions.

To the general public the word may mean that someone has spent too much time idling and is, as a result, suffering a level of "unfitness" readily reversible by a change of exercise regimen. Clearly someone with an illness may or may not suffer from this but they may also suffer changes brought about by the illness, and to fail to make any attempt to distinguish between the states may look negligent. To use the word in this sense indicates the probable outcome for a healthy person, but says nothing generalisable about an ill one. But there is an alternative meaning.

I have been reading (purely for purposes of education and criticism) Science and Practice of Cognitive Behaviour Therapy by Clark and Fairburn. This uses the word conditioning in the behaviourist and Pavlovian sense.

(It also makes the interesting statement that "The Maudsley Hospital did not cater for patients with chronic psychiatric problems, but provided a selective in-patient service. Many of the patients using these services had neurotic problems, notably anxiety and depression. Hence the British concentration on the neurotic problems of adults was determined partly by circumstances and partly by intrinsic interest." This rather confirms the view that was held from the time that Wessely et al first emerged (There was always something of the knight about him)

It seems that the basis is "All of the anxiety disorders were considered to be result of unfortunate conditioning events"." Traumatic conditioning or repeated sub-traumatic episodes were thought to be responsible for anxiety. As a result , the person experienced conditioned fear in response to conditioned stimuli that were adventitious and the conditioned responses were inappropriate. Particular attention was focussed on agoraphobia...."

It is most instructive to see the words used in these contexts and see clearly where they originated.



What is the conditioning that is lost in the "deconditioning"? Is it the level of fitness or is it the behavioural response.

It sometimes might appear that the problem is not with the deconditioning of the patients but the conditioning of Maudsley psychiatrists.
 
There is also the belief that " deconditioning" occurs in any chronic illness, and patients need to be " encouraged" to exercise. I think this completely misses the point that most people with any chronic illness operate at their maximum capacity. What usually limits activity is fatigue and it's time doctors and scientists made a massive effort to research fatigue.
 
chrisb said:
The more I learn the less clear I become about what is meant by "deconditioning" in this context. The concern is that those who use the term may be equally unaware and switch between uses without any understanding of what they mean in any particular statement. It would help if ambiguity could be eliminated by careful definitions.

To the general public the word may mean that someone has spent too much time idling and is, as a result, suffering a level of "unfitness" readily reversible by a change of exercise regimen. Clearly someone with an illness may or may not suffer from this but they may also suffer changes brought about by the illness, and to fail to make any attempt to distinguish between the states may look negligent. To use the word in this sense indicates the probable outcome for a healthy person, but says nothing generalisable about an ill one. But there is an alternative meaning.

I have been reading (purely for purposes of education and criticism) Science and Practice of Cognitive Behaviour Therapy by Clark and Fairburn. This uses the word conditioning in the behaviourist and Pavlovian sense.

(It also makes the interesting statement that "The Maudsley Hospital did not cater for patients with chronic psychiatric problems, but provided a selective in-patient service. Many of the patients using these services had neurotic problems, notably anxiety and depression. Hence the British concentration on the neurotic problems of adults was determined partly by circumstances and partly by intrinsic interest." This rather confirms the view that was held from the time that Wessely et al first emerged (There was always something of the knight about him)

It seems that the basis is "All of the anxiety disorders were considered to be result of unfortunate conditioning events"." Traumatic conditioning or repeated sub-traumatic episodes were thought to be responsible for anxiety. As a result , the person experienced conditioned fear in response to conditioned stimuli that were adventitious and the conditioned responses were inappropriate. Particular attention was focussed on agoraphobia...."

It is most instructive to see the words used in these contexts and see clearly where they originated.



What is the conditioning that is lost in the "deconditioning"? Is it the level of fitness or is it the behavioural response.

It sometimes might appear that the problem is not with the deconditioning of the patients but the conditioning of Maudsley psychiatrists.
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Interesting. Semantics is always interesting in the world of ME.

I always find it kind of sad reading studies that has to underline the obvious, - that the disease is something completely different than deconditioning, of course it is. Reading such always thinking, we are way beyond this nonsense, do we even have to state this. But given the history I do understand that this part always have to be underlined, when we know the crazy BPS-idea that the disease is only a result of deconditioning.

But as pointed out, what is the conditioning in deconditioning? It seems like they double up. Patients have false illness beliefs, as a “decondition”, and as a result decondition in the sense of loosing physical capacity. So in fact patients have to sets of deconditioning. It’s a shame, these people are so completely wrong and not even close. We’re living the consequences of this nonsense.
 
chrisb said:
The more I learn the less clear I become about what is meant by "deconditioning" in this context. The concern is that those who use the term may be equally unaware and switch between uses without any understanding of what they mean in any particular statement. It would help if ambiguity could be eliminated by careful definitions.

To the general public the word may mean that someone has spent too much time idling and is, as a result, suffering a level of "unfitness" readily reversible by a change of exercise regimen. Clearly someone with an illness may or may not suffer from this but they may also suffer changes brought about by the illness, and to fail to make any attempt to distinguish between the states may look negligent. To use the word in this sense indicates the probable outcome for a healthy person, but says nothing generalisable about an ill one. But there is an alternative meaning.

I have been reading (purely for purposes of education and criticism) Science and Practice of Cognitive Behaviour Therapy by Clark and Fairburn. This uses the word conditioning in the behaviourist and Pavlovian sense.

. . . . ..
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Yet if the problem is inappropriate “conditioning” of the patient’s behaviour to certain adverse stimuli, then surely “deconditioning” (or reconditioning) should be the aim of the treatment? In other words if inappropriate conditioning is the problem then deconditioning would be the desired outcome, and not the target for reversal?

I think the usual understanding of physical deconditioning is actually their target during CBT and GET.
 
Roy S said:
good comment-

"I was on the Pace Trial allocated to cbt."...

"What annoys me is the way that my data and that of the other participants was twisted to fit their narratives"...

https://blogs.plos.org/absolutely-m...ercise-dispute-matters-so-much/#comment-33155
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Thanks for pointing this out.

I really appreciate this PACE participant sharing their experience, it would be great to hear from more in the patient community who volunteered for PACE.

This participant has explained that at the time of enrolement they were relatively treatment naive and their post-exertion malaise was relatively benign, such that they hadn't recognised a pattern to it. I expect this was the case for many who signed up to the PACE proposition of a 1:4 chance of graded exercise: that's worse odds than Russian roulette.

In other words, whether intentional or not, and without forcing patients to participate, these BPS studies recruit a self-selecting sample of patients that aren't necessarily representative of the wider ME/CFS population. It's not just severely affected housebound patients who aren't represented, but perhaps the vast majority of cases with the defining symptom of post exertion malaise.
 
chrisb said:
The more I learn the less clear I become about what is meant by "deconditioning" in this context
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It's hand-waving. Details don't matter, the idea is to have an explanation, any explanation, and convert the "illness beliefs". There is no such thing as fluctuating deconditioning. People don't get deconditioned in a few days. Healthy deconditioned people usually recondition within a matter of days. Most of us aren't bedbound so it's all a ridiculous argument anyway. No one is confused about that, the actual explanation is irrelevant and will move over time onto other hand-wavy ideas like CSS, "functional" disorders or any other trendy explanation that can't be tested for and has no basis in evidence.

They know this argument is crap. Nobody cares, the actual explanation isn't relevant, it's all about managing complaints and people dislike us just enough not to bother taking the process seriously.
 
rvallee said:
It's hand-waving. Details don't matter, the idea is to have an explanation, any explanation, and convert the "illness beliefs". There is no such thing as fluctuating deconditioning. People don't get deconditioned in a few days. Healthy deconditioned people usually recondition within a matter of days. Most of us aren't bedbound so it's all a ridiculous argument anyway. No one is confused about that, the actual explanation is irrelevant and will move over time onto other hand-wavy ideas like CSS, "functional" disorders or any other trendy explanation that can't be tested for and has no basis in evidence.

They know this argument is crap. Nobody cares, the actual explanation isn't relevant, it's all about managing complaints and people dislike us just enough not to bother taking the process seriously.
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this
 
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