Trial By Error: CBT and Irritable Bowel Syndrome

[Eagles]

Trial By Error: My Letter to One of Mahana’s Gastroenterology Advisors

http://www.virology.ws/2020/02/05/t...-to-one-of-mahanas-gastroenterology-advisors/

5 February 2020

By David Tuller, DrPH

On its website, Mahana Therapeutics has listed sixteen gastroenterology and psychology advisors from prominent academic and medical institutions. Companies often add such names to their rosters as a way of signaling their significance and their access to great minds. Sometimes these people are compensated; sometimes not. In many instances, these advisors play little role in day-to-day company activities.

In the case of Mahana, that means those advisors not directly involved in the development of the web-based cognitive behavior therapy program for treating irritable bowel syndrome might have little knowledge or awareness of the details of the matter. However, that doesn’t mean they have no responsibility to express their thoughts on the company’s promotional strategy–especially because Mahana itself has so far failed to respond to my questions…

 

[Andy]

@dave30th , a couple of typos.

As a Mahana gastroenterology advisor, you might or might not have alreaduy..

A rogue "u" in "already".

It is of frustrating when a company disseminates unwarranted claims..

I don't think "of" should be there.

 

[dave30th]

@Andy, thanks! I will mark them [sic] since they were in the letter as sent!

 

[rvallee]

Indeed it does appear that IAPT is targeting IBD, Crohn's and ulcerative colitis, with iCBT.


And it appears to be the same exact same tripe: 'It's about willpower in the end. You've got to keep going': a qualitative study exploring the experience of pain in inflammatory bowel disease.

Pain is a widely experienced symptom of inflammatory bowel disease (IBD), which has significant psychological and functional impacts on patients. Understanding the aetiology and management of chronic pain is a poorly understood area of IBD research. This qualitative study aimed to explore the experiences of individuals with IBD and pain, the pain management strategies they use and any needs for future pain management interventions.

Themes identified were 'vicious cycles', 'findings solutions' and 'attitudes'. The experience and impact of pain were rarely viewed in isolation, but rather within the context of a cycle of IBD symptoms. Other 'vicious cycles' identified included anxiety, avoidance and inactivity, and poor understanding and communication. Pain management included short- and long-term strategies. Searching for a solution for pain had an emotional impact on individuals. There were contrasting attitudes from participants, including defeat, tolerance and acceptance.

 

[shak8]

I'm having a moment of CBT-induced diarrhea...back in a moment or so.

 

[chrisb]

Who makes up the names? After Windgassen, we get KLou. I think a study on nominative determinism is needed.

 

[Jonathan Edwards]

Windgassen seems an unfortunate name for anyone who wants to be taken seriously. Especially if they are in the business of bowel trouble. And they specialise in hot air.

 

[Jonathan Edwards]

I suppose you might want to deliver CBT at a bit of a distance if there is bowel trouble about.
Maybe that's why they have invented this.
The Monty Python script writers would have died for this stuff.

 

[Snowdrop]

'It's about willpower in the end. You've got to keep going': a qualitative study exploring the experience of pain in inflammatory bowel disease.

With regards to Moss-Moriss and the rest of the cabal:

If facts were scenery CBT is a bullet train straight to the destination. No need to complicate things. Everything en route to destination is irrelevant. Any contrary thing is just an obstacle to overcome (they have right the strong mental attitude so they use it).

One imagines they no doubt perceive themselves as hard working and relevant. What seems more likely to me is that they are very busy people juggling lots of things in their full lives. Not the same thing as relevant. And being hard-working in the sense of very busy is not the same as doing the hard work that requires the correct skills, tools and learning, patience and a willingness to exert one's mind beyond the comfortable confines of one's preconceptions. They seem to have mastered persistence even as they make haste directly to the wrong station.

Also, testing how to disprove one's theories (as MS has pointed out on twitter apparently--intelligent people doubt). So you'd expect that to apply to their theories.

From everything I've read from this lot hard working in the second sense is not their strong suit.

But they are likely very busy.

 

[FMMM1]

I suppose you might want to deliver CBT at a bit of a distance if there is bowel trouble about.
Maybe that's why they have invented this.
The Monty Python script writers would have died for this stuff.

Thanks for the humour.

Great bird image - is it an albatross (which one)?

 

[Sean]

'It's about willpower in the end. You've got to keep going': a qualitative study exploring the experience of pain in inflammatory bowel disease.

Short version: It is all your fault if you don't get better.

 

[James Morris-Lent]

Short version: It is all your fault if you don't get better.

It may be worse than that in this case. Inflammatory Bowel Diseases are not MUS by any definition. So now they are projecting catastrophization or whatever bogus ideas on top of diseases in which pain may well signal an urgent problem. It would be a tad irresponsible if they were to, perhaps, discourage people from utilizing healthcare resources for symptoms which may indicate critical intestinal damage.

 

[Sean]

It would be a tad irresponsible if they were to, perhaps, discourage people from utilizing healthcare resources for symptoms which may indicate critical intestinal damage.

It is utter madness. The early signs of many serious diseases are vague and non-specific.

All they are going to achieve with this drivel is to increase morbidity and (where relevant) mortality in most if not all disease groups by delaying and/or diluting diagnosis and treatment.

Does the rest of medicine really not understand what is happening here, and its consequences?

This stuff is nothing more than naked empire building, cowardice in refusing to admit they are wrong, and corruption in offering excuses to governments and the insurance industry to not provide proper health services.

This is very depressing stuff.

 

[Sly Saint]

A blog from James Coyne in 2016
No, irritable bowel syndrome is not all in your head.

Previous explanations for IBS focused on it being an expression of unconscious conflicts. Psychoanalytically oriented explanations suggest anal conflicts in which the patient struggles with hostility that she cannot express directly. IBS can been seen as a conflict between retaining in expelling fecal contents. Diarrhea or loose bowel movements can be seen as symbolically crapping on somebody in a situation where anger cannot be directly expressed.

Such explanations are creative and even literary, but they are testable hypotheses about an individual patient. Such ideas just do not hold up in research studies, often because the hypotheses cannot be coherently expressed with key variables assessed with validated measures.

But if I or a family member developed what looked like IBS, and it could not be brought under control in primary care. I would not recommend referral to a mental health professional as the next step.
In the UK, IBS is considered a medically unexplained symptom (MUS). IBS patients are likely to be referred to psychological interventions for which there is only weak evidence.

A segment of CBS This Morning Saturday News showed the view of Irritable Bowel Syndrome (IBS) as “all in your head” is outmoded.

https://www.coyneoftherealm.com/2016/05/21/no-irritable-bowel-syndrome-is-not-all-in-your-head/

 

[Kalliope]

Trial by Error: My Follow-Up Letter to Professor Rona Moss-Morris

Ten days ago, I sent a letter to Professor Rona Moss-Morris of King’s College London, seeking information about the licensing deal involving her web-based program of cognitive behavior therapy to treat irritable bowel syndrome. Since I have not heard back, this morning I made a second attempt to reach out to her and obtain some answers to my questions.

http://www.virology.ws/2020/02/10/t...QkloVuvTetgDQxbHEYfdxFYdnCBzYrb3bwU3XM4K_aBJ8

 

[Snowdrop]

Not surprising she has not answered. What answer can she give? She must know by now that non-sequiturs are not going to help her bluff through as a legitimate answer to valid questions.

 

[Sean]

Link without the FaceBook identifier:

http://www.virology.ws/2020/02/10/trial-by-error-my-follow-up-letter-to-professor-rona-moss-morris/

 

[Cheshire]

Trial By Error: My Letter to Two More Mahana GI Advisors

I’ll soon post a blog on why I’m spending so much time on this IBS issue when I’m supposed to be focused on ME (or CFS, ME/CFS, CFS/ME, or whatever term is being used to refer to this illness or cluster of related illnesses). In the meantime, here’s a copy of the letter I sent this morning to two more of Mahana Therapeutics gastroenterology advisors, after the one I sent to a UCSF guy last week. (I received an auto-response, which informed me that the doctor was currently out of town.)

This time I wrote to Dr Peter Lu and Dr Carlo di Lorenzo. Both are well-regarded gastroenterologists at Nationwide Children’s Hospital in Columbus, Ohio. Mahana has more than a dozen gastroenterology and psychology advisors. I guess that means it is likely I will send additional letters while I continue to wait for answers.

http://www.virology.ws/2020/02/11/trial-by-error-my-letter-to-two-more-mahana-gi-advisors/

 

[Kalliope]

Trial By Error: My letter to Mahana's CEO and CO-founder

Venture capitalist Robert Paull is listed on the Mahana Therapeutics website as the company’s co-founder and CEO. I have no idea how he got involved with this group of UK researchers and King’s College London. Given my own experiences, I would certainly have advised him against getting in bed with them, had he asked me–which he didn’t.

As it is, Mr Paull’s company has now licensed a product that generates minimal and transient reported benefits in reducing symptom severity in irritable bowel syndrome–yet is promoting the product based on its purported success in long-term reduction of symptom severity. I pointed out this dilemma in the letter I sent Mr Paull earlier today.

 

[Trish]

I hope the end result is the company collapses.

I can see the point of @dave30th pursuing this, even though his funding is for ME/CFS, not IBS. Rona Moss-Morris is heavily involved in doing the same sort of crap research and treatment for ME/CFS, and undoubtedly she and her colleague Trudie Chalder have plans in place to set up a similar company to sell their crap on-line CBT for ME/CFS as well, which I'm sure would be taken up with enthusiasm by the NHS.

If this IBS venture can be stopped in its tracks before it fully launches, not only will it help patients with IBS, there should be a knock on effect for patients with ME/CFS too - I hope.