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

Michiel Tack said:
I'm confident that GET/CBT proponents believe that these treatments work. I see no reason to think otherwise.
Click to expand...
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.
 
Jonathan Edwards said:
Maybe something like that.

I sometimes wonder what it is to pretend to honestly believe. Maybe it is to believe and not believe at the same time.
Click to expand...

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.
 
Jonathan Edwards said:
I sometimes wonder what it is to pretend to honestly believe. Maybe it is to believe and not believe at the same time.
Click to expand...
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.
 
Michiel Tack said:
I'm confident that GET/CBT proponents believe that these treatments work. I see no reason to think otherwise.
Click to expand...
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.
 
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.

Research indicates that PPS conditions share similar cognitive and behavioural responses to symptoms, such as avoidance and unhelpful beliefs. This suggests that a transdiagnostic approach may be beneficial for patients with PPS.
Click to expand...

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.
 
Cinders66 said:
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.
Click to expand...
€ £ $ ¥

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.
 
Sly Saint said:
RM-M


so that's the online CBT sorted then
https://www.mahanatherapeutics.com/

european operation get redirected here https://www.himssanalytics.org/europe/home

company formed in 2018 and MM has stock options...........hmm

a link on the mahana therapeutics home page takes you to this
https://www.mobihealthnews.com/content/depth-defining-burgeoning-field-digital-therapeutics





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

Mahana Therapeutics, a digital therapeutics company reimagining the treatment of chronic diseases, today announced that the Company has entered into a licensing and collaboration agreement with King’s College London, a leading research university and one of the oldest and most prestigious universities in England. Mahana has acquired a worldwide exclusive license to an innovative digital therapeutic for the treatment of irritable bowel syndrome (IBS).

Professor Rona Moss-Morris, Head of Psychology Department, Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London led the development of the digital program in collaboration with Trudie Chalder, Professor of Cognitive Behavioural Psychotherapy and Dr. Alice Sibelli both also from King’s, Hazel Everitt, GP and Professor of Primary Care Research, Faculty of Medicine, University of Southampton, and a broad multi-university team.

“We spent over 18 years developing and clinically testing a personalized digital CBT program for adult IBS patients,” said Rona Moss Morris. “We believe our multi-center, randomized controlled trial (RCT) of 558 patients is the largest clinical trial ever conducted demonstrating the clinical safety and efficacy of a digital CBT product for IBS.”

The trial, with results published in 2019 prestigious medical journal Gut[1], demonstrated that web-based CBT showed substantial and durable IBS symptom severity improvements versus treatment as usual (i.e. doctors visits alone) and also led to reductions in anxiety and depression in patients over three, six and twelve-month time periods.
Click to expand...

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
 
Sly Saint said:
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
Click to expand...
We spent over 18 years developing and clinically testing a personalized digital CBT program for adult IBS patients
Click to expand...
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.
 
You must log in or register to reply here.
Back
Top Bottom