Protocol: Persistent physical symptoms reduction intervention: a system change and evaluation (PRINCE), 2015 onwards, Chalder, Moss-Morris, et al

[dave30th]

Here's page 3 of the CBT Patient manual introduction to the online program:

"There are a number of clinical trials showing that Cognitive Behavioural Therapy (CBT) to help people with IBS manage their lifestyles and symptoms better, leads to a significant reduction in IBS symptoms and the impact the symptoms have onpeople’s lives (1, 2).

This self-management programme is based on an approach that has been shown to work in a smaller research trial with people with early onset IBS (3).

We now want to test the intervention in a larger trial with people who have had IBS for longer, with some telephone support from a therapist."

 

[rvallee]

Linkies:

Therapist Manual -- ACTIB Trial

Patient Manual -- ACTIB Trial

I had a quick look and it's identical to PACE, just for IBS. Literally identical and with all the regular fluff from Chalder about perfectionism, emotional processing, boom and bust and all that other crap (pun very intended). Easy work when you just copy-paste and do a search-and-replace for a few words, now gimme millions.

Literally PACE for IBS:

Just as there are many factors involved in triggering IBS, there are also many factors that are involved in sustaining it. According to this model, the symptoms of IBS are perpetuated predominantly by unhelpful illness beliefs and coping behaviours. These beliefs and behaviours interact with the participant’s emotional, physiological and interpersonal state/situation to form self-perpetuating vicious cycles of negative patterns ofthoughts, emotions, behavioursand symptoms.

I note a frankly disturbing inability to understand the experience of literally shitting your pants in public. Again, a very testable hypothesis, let's load these researchers with laxatives and have them pretend to function normally. Then for good measure scold them for being concerned about walking around with pooped-out pants, which they should do proudly, I guess? Weird how people who touched the very hot stove show a distinct lack of interest at touching it again. So odd, truly inexplicable behavior.

We even have our familiar loopy cycle that has been around for well over a century, identical by itself, just slightly moving target.



The same all-or-nothing nonsense. Notable that literally all of this stuff is "may be" and "could be", some people are, some people may. Funding this is misappropriation of public funds, to be honest. This is not serious.



Do these people even interact with other people? At all? This reads like it came from aliens grown in a vat who are trying to wrap their around human behavior. It takes a serious inability to have insight into human consciousness to seriously write this tripe. Reminds me of how the various European empires would describe the local populations in their colonies, with which they do did not interact or even speak to.

Lots of the document focuses on persuading the participant. It seems to be the main theme, actually, how to persuade the participant that they are experiencing things they are not actually experiencing (i.e. "unhelpful" thoughts and beliefs"). As usual, this is a common theme: why are the patients rejecting an explanation that does not fit their actual experience and how to convince them otherwise.

Frankly, CBT appears even more ridiculous looking into this. This is simply not serious in this context. Exactly no part of this is meaningful scientific research and funding this nonsense is egregious misppropriation of public funds, bordering on fraud. What nonsense.

 

[Amw66]

I had a quick look and it's identical to PACE, just for IBS. Literally identical and with all the regular fluff from Chalder about perfectionism, emotional processing, boom and bust and all that other crap (pun very intended). Easy work when you just copy-paste and do a search-and-replace for a few words, now gimme millions.

Literally PACE for IBS:


I note a frankly disturbing inability to understand the experience of literally shitting your pants in public. Again, a very testable hypothesis, let's load these researchers with laxatives and have them pretend to function normally. Then for good measure scold them for being concerned about walking around with pooped-out pants, which they should do proudly, I guess? Weird how people who touched the very hot stove show a distinct lack of interest at touching it again. So odd, truly inexplicable behavior.

We even have our familiar loopy cycle that has been around for well over a century, identical by itself, just slightly moving target.

View attachment 9690 View attachment 9691 View attachment 9692

The same all-or-nothing nonsense. Notable that literally all of this stuff is "may be" and "could be", some people are, some people may. Funding this is misappropriation of public funds, to be honest. This is not serious.

View attachment 9694

Do these people even interact with other people? At all? This reads like it came from aliens grown in a vat who are trying to wrap their around human behavior. It takes a serious inability to have insight into human consciousness to seriously write this tripe. Reminds me of how the various European empires would describe the local populations in their colonies, with which they do did not interact or even speak to.

Lots of the document focuses on persuading the participant. It seems to be the main theme, actually, how to persuade the participant that they are experiencing things they are not actually experiencing (i.e. "unhelpful" thoughts and beliefs"). As usual, this is a common theme: why are the patients rejecting an explanation that does not fit their actual experience and how to convince them otherwise.

Frankly, CBT appears even more ridiculous looking into this. This is simply not serious in this context. Exactly no part of this is meaningful scientific research and funding this nonsense is egregious misppropriation of public funds, bordering on fraud. What nonsense.

This on so many levels

 

[dave30th]

We even have our familiar loopy cycle that has been around for well over a century, identical by itself, just slightly moving target.

Yes I was going to comment a bit on the "vicious cycle" they have for IBS as well as "CFS."

 

[Mithriel]

"There are a number of clinical trials showing that Cognitive Behavioural Therapy (CBT) to help people with IBS manage their lifestyles and symptoms better, leads to a significant reduction in IBS symptoms and the impact the symptoms have on people’s lives (1, 2).

I can just about believe that CBT could help manage lifestyles so reduce the impact on someone's life. My eye problems are not curable but I have reduced the distress of living with them by wearing special glasses and things but also by keeping a record of attacks so that I could see how often they happened. I had been getting panic attacks about them but these reduced.

However I do not see how CBT could help the number of bouts of diarrhoea. They are not claiming it is stress reduction but that it is thinking about the symptoms that is actually causing them.

My eye doctor never said my behaviour was causing the disease. In the opposite to a CBT position we started with how I thought and felt and the changes to my behaviour are not to become more normal but to do things that healthy people do not have to.

The benefit that could be got from psychological help is turned on its head by CBT ideology.

 

[rvallee]

Yes I was going to comment a bit on the "vicious cycle" they have for IBS as well as "CFS."

Really becoming clear that the CBT-GET behavioral model has nothing at all to do with ME. It's a generic MUS concept with CFS simply being one of the manifestations. Chalder had a talk with all those talking points on the topic of MUS in general, the personality fluff, all or nothing, whatever that means and not that there's any evidence whatsoever, just a vague "some people". It's the same thing to them, the assumptions, the model, the mechanism, the treatments. CFS=IBS=MUS=FND=FMS=POTS=BDS=PPS, add all you like it's all the same thing and all the various models of somatic syndromes and persistent this and recurring that is all conversion disorder based on some imaginary, and never actually observed, emotional thing.

So when they talk about having a model of ME, or even CFS, it's not even true. They don't have a specific model of it, it's all generic MUS, aka psychosomatic something something. Vague, non-specific, devoid of actual substance, entirely built on assumptions presented as a series of "may be"s and "could be"s. The current paradigm, safe and effective, but still needs more research to figure out to make it effective. All on some imaginary philosophical split about mind-body that absolutely nobody with any of those illnesses cares in the slightest.

And guilty without charge, we can't even object or dissent without being labeled as anti-science anarchists, or whatever. Against something that has the exact same level of evidence as astrology and just as much speculation. Good grief what nonsensical destruction of human life on nothing more than an idiotic belief system.

 

[Snow Leopard]

Literally PACE for IBS:

At first I thought you were joking, but well, here is more evidence of a cut and paste job:

Over-vigorous activity alternating with resting for long periods. This is also known as “boom or bust” behaviour. People with IBS may tend to expect a lot of themselves and can get over-committed, trying to look after everybody else’s needs before their own. This can cause a boom or bust cycle. On a good day when IBS symptoms seem to be under control, individuals may over-exert themselves to catch up on things. This inevitably exacerbates symptoms, causing them to slow down or rest completely. The result is that they get behind on their commitments and as soon as they feel a bit better they push themselves really hard to catch up on things again.

Search and replace "CFS" with "IBS"...

 

[rvallee]

At first I thought you were joking, but well, here is more evidence of a cut and paste job:



Search and replace "CFS" with "IBS"...

Also notice the "may tend to", "seem to", "individuals may", "can cause". That's all this is, a bunch of "may be"s and "could be"s and the like. Nevermind it doesn't even make any freaking sense while still maintaining the black box explanation where "things occur".

I'm sorry but this is pure garbage. It's completely unprofessional to make such off-hand comments and base an entire illness model along with arbitrary treatments based, at best, on "I guess some people do be like that, maybe".

The fault here isn't even on the authors, they are a lost cause, but that this nonsense was reviewed, approved, funded, steered, peer-reviewed, published and actually promoted as headline news shows a completely broken system that rewards pseudoscience completely detached from objective reality.

 

[Invisible Woman]

I suffered IBS for years and years.... Eventually I got it under control. It turns out for me too much sugar and refined carbs are the issue. Limit those and I'm fine, no cramps, no mad dashes to a loo, no medication.

I discovered IBS was often worse on holiday, when I was relaxing and having a lovely time. This is because I was also more likely to wander into a nice restaurant and order what I fancied off the menu rather than thinking about what else I'd eaten earlier in the day.

Sure, in hindsight sudden work emergencies might coincide with it, but that was because in my case it also coincided with not getting home for the planned meal and eating a carb heavy but convenient sandwich.

If I watch my carbs then stress makes virtually no difference to my gut function.

Yet again, just like the BPS theory behind ME, there is just the same unproven idea with vast sums of public money being spent.

 

[James Morris-Lent]

Really becoming clear that the CBT-GET behavioral model has nothing at all to do with ME.

It's the same thing to them, the assumptions, the model, the mechanism, the treatments. CFS=IBS=MUS=FND=FMS=POTS=BDS=PPS

It seems to me like the strategy has been to establish a nice little kingdom in the vacuum of CFS and these other conditions, and then expand the empire into virtually everything chronic or recurring - MUS or not - that brings people to the doctor's office.

-(post-)Cancer fatigue
-Sharpe's bizarre aging thing
-claiming MS patients commonly have functional neurological symptoms on top of MS. (Not to mention that fatigue that they complain about that we can't see). (Why are people always picking on MS patients?? They are the Poland of this whole phenomenon)
-etc.

Honestly it seems like their goal is to be able to get their hands on anybody who has any sort of persistent complaint or impairment. Which is everybody eventually. It doesn't matter how bad the disease is, just say that they are over-complaining, or experiencing unreasonable levels of anxiety or sadness. Not to mention playing the rest of us by raking in those secondary benefits.

 

[lansbergen]

Honestly it seems like their goal is to be able to get their hands on anybody who has any sort of persistent complaint or impairment.

yep

 

[dave30th]

Search and replace "CFS" with "IBS"...

yes the boom and bust stuff. where do they get that from related to IBS? I mean, I'd never heard of that at all in this context.

 

[dave30th]

Sharpe's bizarre aging thing

What's this about?

 

[James Morris-Lent]

What's this about?

This is what I was remembering re Sharpe - the HOME study:

https://www.s4me.info/threads/the-home-study-michael-sharpe-s-cbt-for-the-elderly.2499/

I think there's something else that was discussed here that I must be conflating with that study. Something about elderly people acting young and energetic again when they're are in a space with music/memorabilia/etc from their youth/young-adulthood. Maybe somebody else remembers the specifics. It probably doesn't have to do with Sharpe.

 

[Snowdrop]

Apologies if this has already been posted here or on another thread.

This is an October 2019 version of TC's PPS:

https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-019-2297-y

 

[Sly Saint]

Correction to: Persistent physical symptoms reduction intervention: a system change and evaluation in secondary care (PRINCE secondary) – a CBT-based transdiagnostic approach: study protocol for a randomised controlled trial

Correction to: BMC Psychiatry 19, 307 (2019)

https://doi.org/10.1186/s12888-019-2297-y

Following publication of the original article [1], the authors identified a typographical error in the proposed sample size section. The correct sentence is given below.

‘The sample size calculation (Stata command sampsi) suggests that 161 patients per arm (322 in total) are needed to detect this effect size or a larger one with 90.14% power allowing for a deflation for including baseline measures in the analysis model (factor 0.84 assuming a correlation between baseline and 52 weeks WSAS of 0.4) and an attrition rate of 25%’.

https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-020-02811-w

 

[rvallee]

Correction to: Persistent physical symptoms reduction intervention: a system change and evaluation in secondary care (PRINCE secondary) – a CBT-based transdiagnostic approach: study protocol for a randomised controlled trial


https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-020-02811-w

Those numbers are so completely made-up it's ridiculous, like the most aggressively blatant version of "lies, damned lies and statistics" ever. They are pretending to calculate 10-digit precision entirely out of guesstimates. Just straight up name the experiments GIGO-X while they're at it. The entire edifice is made entirely out of cardboard, Potemkin science.