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

Yes, I suspect this may be right. I think they are so focused on the notion of 'fatigue' as a key symptom, and how its subjective nature apparently fits into their BPS world, that to them it eclipses all else. Religious zealots are never convinced by reality, and I really think there is an element of that, seduced by their own BS.

 

Career preservation

 

I think the fall out would be way too catastrophic for all the therapists and academic departments.

 

A not entirely authentic outward optimism with doubts that are never expressed?

They want to believe, but testing CBT/GET in a properly controlled clinical trial is too scary because they know it might not actually work.

 

I think that's called 'doublethink'. According to George Orwell.

"To know and not to know, to be conscious of complete truthfulness while telling carefully constructed lies, to hold simultaneously two opinions which cancelled out, knowing them to be contradictory and believing in both of them, to use logic against logic, to repudiate morality while laying claim to it, [...] to forget whatever it was necessary to forget, then to draw it back into memory again at the moment when it was needed, and then promptly to forget it again: and above all, to apply the same process to the process itself -- that was the ultimate subtlety: consciously to induce unconsciousness, and then, once again, to become unconscious of the act of hypnosis you had just performed."

 

I suspect that some have just latched onto a career cynically but a lot believe their treatment works wonderfully but those pesky patients keep listening to doomsayers and joining organisations or are just too lazy/obstructive/weak to do the work involved.

 

Unfortunately, although that may be true, what these treatments work on, ie their concept of ME, is very far removed from the illness I have. In fact it is a concept which they seem to have invented without reference to me or any other ME sufferers. They also have their own concept of "work", which doesn't seem to cover "cure" or "improve".

If their beliefs weren't doing any harm, ie if they were just useless, and we could choose to ignore them as we can homeopaths and pendulum swingers, then their good intentions and well-meaning eagerness would merely be irritating. But it's much worse than that, they are consistently causing harm whilst keeping their fingers firmly stuck in their ears. Preventing progress whilst I've been stuck on my sofa for 5 years, and leaving others to rot for a couple of decades before that.

So I don't care what they believe or don't believe. They are just in the way.

 

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

published 22Oct 2019
BMC Psychiatry volume 19, Article number: 307 (2019)
https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-019-2297-y

 

I don’t understand how these people can continue presenting our avoidance of activity as somehow a fault and a targetable behavioural treatment factor in an illness now globally recognised as with genuine physical basis, with demonstrated exertion abnormalities etc. It’s like presenting people with diabetes as sugar phobic or something.

trudie chalder is an absolute disgrace. And the frustrating thing for me is I know that if she consented to challenge from anyone informed her arguments would be intellectually destroyed within 5 minutes. Yet because she remains safely detached from the General community, minus The unfortunate fatigued victims of her London service, she seems still untouchable and influential, financed to endlessly produce these papers from her ivory tower.

 

€ £ $ ¥

And so on. That's it. Some people see the savings and fund research that bring them more savings. Mostly motivated by the insurance industry, which is humongous. Nevermind that it's vastly more expensive overall, but that never stopped anyone from making selfish choices.

 

Mahana Therapeutics Enters Into Licensing Agreement With King’s College London for Innovative Digital Therapeutic to Treat Gastrointestinal Condition
January 10, 2020

full article
https://apnews.com/Newswire/a4e152a95184a4c855903ff2f29a4765

kerching for R.MM

eta: several threads on the trial referred to
https://www.s4me.info/threads/answe...verage-of-new-chalder-moss-morris-trial.9030/

is one

 

There was a big media splash a few months ago about their "innovative" program, it consisted mainly of "don't think about it" and "don't poop every time you need to poop", which anyone who knows anything about IBS understands is useless advice. Those were the two main findings.

I'm sorry these people are delusional. This isn't old wine in new bottles, it's snake oil in refurbished paper bottles. This is exactly as innovative as astrology through the Internet, which actually has been going on for over 18 years so... "innovative".

Is there seriously no standard for what can be called a controlled trial? No one's bothered at the fact of calling clearly non-controlled trials as controlled? Why is this subfield exempt from all normal standards?

 

Of course, at 24 months there were no statistically significant differences between the web-based CBT group on the IBS severity scale. And the non-statistically significant difference was 12 points lower on the web-based group. A difference of 50 points on the scale is considered clinically significant.

 

Can anyone find the CBT manuals for IBS on the IAPT website? Supposedly they're posted--at least the patient one--but I've been looking around and can't find it. I'm curious if it contains all sorts of messages about how CBT has been proven to be effective for IBS, like the PACE manuals do.

 

So this is why the BMJ is casting doubt on the need for blinding this week.
What a shabby circus medicine has descended to.

 

Linkies:

Therapist Manual -- ACTIB Trial

Patient Manual -- ACTIB Trial

 

Thanks so much!