Michael Sharpe skewered by @JohntheJack on Twitter

Whatever you call it whether its a model a theory or testing of a hypotheses (which is supposed to be designed to challenge the theory) therefore making it falsifiable, the BPS are busy claiming there is a functional component to every single disease anyway so that they can add MUS onto MS or cancer or arthritis etc.

They are actually lobbying for that via the ICD. The idea goes like this......

Got MS? We think you are over reacting to it. Therefore you have MUS on top of your MS.

By design the whole thing together is unfalsifiable. They just plan well ahead for when one model is knocked down so that they can just keep themselves on the gravy train. The next obvious unfalsifiable move is "chicken and egg".

What came first the disease or the behaviour/personality type?

They are shifting the game to, "you have to falsify our unfalsifiable model or you are wrong".

Sharpe has now moved onto, "all we did was compare treatments and showed CBT and GET are the best treatments by doing a comparison".

And so on and on. Its science but not as we know it!

 

Great question, @strategist. Could you ever disprove those ideas? I can't imagine any finding that would enable us to say for sure these ideas were wrong.

We can cite studies that suggest exercise has a negative effect on PwMEs' physiology. So that shows there's may be some basis for our fear. So its not entirely pathological. But they could still say that the fear exceeds what is jusitified by the consequences. And so the long day wears on.

 

Yes, of course it was. How they have tried to distance the trial from the appalling ideas that inspired it!

 

If they are forced to acknowledge that the current fear avoidance narrative has been disproved by PEM & CPET literature, then they might change their position to patients experiencing postexertional aggravation of symptoms as result of believing that exertion will aggravate symptoms.

Sounds crazy but these people are from a milieu where it's acceptable to seriously consider that standing in magical circles and telling your illness to stop can be curative.

 

Some preliminary thoughts about how to categorize the PACE trial in scientific terminology -- and why this could be important.

I thought that the ME patient community and their advocates pointed to some contradictory and unlogical elements already in the underlying assumptions of the previous research and publications inspired by the BPS approach to ME/CFS, prior to the PACE trial -- (e.g. the boost and crash circle of activity)

These underlying assumptions perhaps can be described as the "BPS narrative of ME/CFS" -- a narrative does not have to be logical and can consist of different interwoven sub-narratives that, again, don't have to back each other logically.

As somebody else (sorry don't remember who and where) pointed out, the idea of the PACE trial then was a further contradiction to a fundamental part of the BPS narrative, namely that anybody who is denying an actually existing, pathological fear of exercise or anyone who believes that exercise detoriates his condition severley, would voluntarily take part in a trial testing the benefits of exercise. [edited - thanks, @Carolyn Wilshire !]

Since the trial's underlying implicit assumptions, its political and scientifical presentation (also "framing", perhaps) are part of the BPS narrative, it is difficult to seperate the trial's underlying hypthesis/ theses/ premises from the narrative.

Hm, don't know if this helps to clarify anything.

Certainly the critisism brought up by so many scientists and journalists presented theoretical sufficient arguments to revise the PACE paper and the BPS narrative of ME/CFS alike. However, it continues to be relevant in the medical practice. [ETA: see the latest example from Denmark:https://www.s4me.info/threads/danish-recommendations-on-funktionelle-lidelser.4645/ ] Why?

Perhaps it would be helpful to put all this in the wider frame of the BPS approach. IMO, to put any BPS approach in a "model" by which it would be possible to describe how the relevant spheres interact, is hubris. It is impossible to create a model, where all relevant data of the biological system, the psyche and the social milieu of a human being can be considered. It is already impossible to decide which data would be relevant.

This would be a topic for another thread, though: Is the BPS approach used as a model already a paradigm in medicine? In the rehabilitation facilities I got to know, it certainly is (e.g. for conditions such as MS, "established" neuromuscular diseases and Rheuma). As a trivial concept which just tries to acknowledge that in many illnesses psychological and social factors are relevant, and that, most notably, chronic diseases strongly affect the patients in many aspects of their life, "BPS" would be of much better use, IMO.

 

Actually this may not be true. The use of willow bark for fever was not based on any theory about prostaglandin synthase inhibition. Similarly for foxglove leaf. Gold for rheumatoid arthritis was used originally because it was thought to be useful for TB but the Empire Rheumatism Trial of gold in the 1960s was done at a time when it was accepted that it was useless for TB and nobody had any idea why it seemed to help some people with RA. If I remember rightly phenylbutazone was subjected to formal trials because somebody discovered that the benefit of another drug, that happened to be solubilised using phenylbutazone, was probably due to the phenylbutazone - with no theory attached. Chloroquine is used for rheumatic disease because by chance people using quinine in the tropics found their arthritis improved. And who knows why quinine was used for malaria.

 

I'm not as sure as others of this argument. So for example, there are people with a pathological fear of spiders, sometimes so bad they avoid going anywhere outdoors, of even into cupboards. But these folks often choose to go into therapy to fix it. Even though they know that they'll probably have to meet a spider head-on at some point in the process.

 

And most certainly not respected.

 

I know this seems pedantic but precision of language is important, as the PACE/BPS crowd so often pick up on it as a way to divert from the valid criticisms of their research. As far as I’m aware – and as Sharpe has pointed out on Twitter – the PACE authors do not refer to “false beliefs”. They refer to “unhelpful beliefs”. Of course, it is reasonable to infer that an unhelpful belief which needs to be challenged by a therapist in order to effect recovery is false. But they don’t use the term, as far as I’m aware.

Again, I agree with your point but I’m not sure “pathological” is the right word.

Exactly. This illustrates that at least some of their beliefs may be unafalsifiable. Just as a creationist can claim that God created the evidence of evolution to make it looks as though the earth is more than 10,000 years old, whatever evidence of organic illness is found in ME, there may remain some BPS beliefs that can only be discredited by demonstrating their unfalsifiability.

One of the difficulties seems to be in pinning down exactly what it is that they believe. Their framework appears to be able to change without being acknowledged to have been wrong – a bit like the SMC factsheet which was updated to remove falsehoods about the CDC without any acknowledgement of the error (https://www.s4me.info/threads/cdc-responds-to-false-smc-factsheet-claim.4355/page-2#post-76922)

 

anyone mention Camelford yet? Maybe this could be Wessely's Law.

http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.738.9135&rep=rep1&type=pdf
https://www.theguardian.com/society/2012/mar/14/camelford-water-poisoning-inquest

 

Trouble is, their approach to trialling only has some tenuous credibility if you know absolutely for sure beforehand the underlying condition is very definitely attributable to false illness beliefs. So you cannot magically extend that trialling approach to supposedly prove the illness is due to false illness beliefs; like trying to pick themselves up by their own bootlaces. Especially, as @Mike Godwin says, if you have biased out the possibility of proving it is not due to that.

 

Thank you, @Carolyn Wilshire. It's more precise to say:" anybody who is denying an actually existing, pathological fear of exercise" - At least I think that this is what the BPS approach implies. (Have edited my post accordingly)
What do you think?

 

This is why their is an important difference for me. Fear of spiders is fear of a nasty feeling that you know has no long term consequence and have reason to think might go away if you practiced being with spiders. We all see children overcoming fears all the time and as adults we overcome fears - of booking airline flights or getting in to a not so warm swimming pool or whatever.

But fear of exercise for PWME is fear of harm - including long term harm. And there is absolutely no reason to think that the harm will not happen if you do more exercise. PWME do not think they are being squeamish about exercise. If they have found it unpleasant, as you say, then they have evidence of a problem that is not just due to a squeamish reaction. And even if their fear is based on reading internet forums there is no reason to think that exposure to exercise would change that.

As I said before, if PWME could be persuaded by a booklet or a chat that really exercise may seem frightening but does not make you feel ill if you try it and does not harm then they do not need CBT or GET, just a pat on the back and some encouragement. If they need CBT with all the 'cognitive' paraphernalia in the Wessely and header 1989 article they must be pretty convinced that doing exercise might be a bad idea after all - which nobody thinks when it comes to tiny harmless spiders or harmless snakes.