Trial By Error: CBT and Irritable Bowel Syndrome

They are already forging ahead with a similar product for IBD
A New Way to Treat IBD
Mahana is currently developing a personalized digital treatment for adolescents and adults with Inflammatory Bowel Disease. This product will be tested in a series of research studies and randomized, controlled trials. This treatment will tap into the power of Cognitive Behavioral Therapy (CBT) to help patients living with IBD.
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https://www.mahanatx.com/treatments/ibd-research

"tap into the power of Cognitive Behavioral Therapy"

wtf
 
strategist said:
Is this venture capitalist unable to assess claims of treatment efficacy and a little gullible or does he not care whether it really works or not?
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I would imagine he would be relying to a large extent on advice from other people about technical or medical aspects.

If in turn those people have fallen for the "expert" opinion currently in favour he may not know or understand anything at all about it.

This could go a couple of ways-

- He is just interested in making money. Even if he makes enough from the health service in the short term he may not care. He'll already have moved on to the next thing.

- If his or his company's good name become tainted by association - that might cost him. Therefore he will care and will pull the plug.

If this goes wrong the CBT brigade could make themselves pariahs to business people and it can be a very small world indeed.

If it goes the other way it will accelerate the use of CBT for everything until eventually the craze passes and the next one comes along. Massive amounts of public money spend on wasted hot air.
Don't we have a regulatory body to ensure that doesn't happen? [sarcasm]
 
Last week, I wrote to Rob Paull, the co-founder and CEO of Mahana Therapeutics, regarding the company’s misleading claims about the web-based cognitive behavior therapy program for irritable bowel syndrome it recently licensed from King’s College London. I have also written to Professor Rona Moss-Morris, the co-lead investigator of ACTIB, the study that road-tested the program, as well as three of Mahana’s prominent gastroenterology advisors.

So far, no one has responded or attempted to explain why Mahana is making unwarranted statements about the efficacy of the program. Presumably the company would like to have regulators in the UK and the US approve the product for public use. If so, it would be smart for Mahana and Mr Paull to be honest in describing what the findings do and do not show. So far, they have failed that test.
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http://www.virology.ws/2020/02/17/trial-by-error-my-follow-up-letter-to-mahana-therapeutics-ceo/
 
Irritable bowel syndrome (IBS) is a common gastrointestinal condition characterized by cramping, bloating, gas, and diarrhea or constipation. It likely has multiple causes, and many patients continue to suffer despite taking medication. Cognitive behavioral therapy (CBT) has sometimes been recommended as a treatment based on the notion that it can help patients reduce stress, change their eating patterns, and modify how they think about the illness. But now the largest study to date of CBT for IBS has shown that it has little impact in reducing symptom severity.

The UK study, conducted by investigators at King's College London and the University of Southampton, included 558 people with unresolved IBS. Participants were randomly assigned to receive telephone-delivered CBT, web-based CBT, or no intervention. All three groups continued to receive their usual medical treatment. The study did not test in-person CBT. The 12-month and 24-month results were published in 2019 in, respectively, the journals Gut and Lancet Gastroenterology & Hepatology.
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https://www.berkeleywellness.com/healthy-mind/stress/article/cbt-ibs-worth-try
 
Trish said:
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.
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I agree. If they can get away with this with IBS, it will have an impact on ME/CFS. Although the ME/CFS community is a lot more outspoken than the IBS community.
The difference is that we know that IBS is happening in the gut, so it's less vague. There is a ton of research that the microbiome has something to do with it and there are even already successful treatments, biomarkers being tested etc.

That means that the CBT brigade is never going away, not even when ME/CFS is more explained than it is now. Not even when it is pretty much fully explained (see IBD, MS and HIV). So I think it is necessary to expose the CBT crowd, because it's just really bad science. It doesn't really matter if they stop doing research on ME/CFS, I want them to stop doing this to everyone. To existing diseases, to potential new diseases, this nonsense has gone on for way to long in the history of medicine.
 
Trial By Error: Another Letter About Mahana; BerkeleyWellness on IBS Study
24 February 2020
By David Tuller, DrPH

I have been trying to find out why Mahana Therapeutics, a San Francisco-based start-up, has chosen to disseminate misleading information about a web-based cognitive behavior therapy program for people with irritable bowel syndrome. Because Mahana’s co-founder and CEO, Rob Paull, has not responded to my letters, I have contacted some of those listed as science advisors on the company’s website.

Earlier this month, I sent one such letter to Dr Mel Heyman, a pediatric gastroenterologist at University of California, San Francisco–one of Berkeley’s sister UC campuses. I received an automatic e-mail response that Dr Heyman was out of the office for a period of time. Last week, after his stated return date, I sent another letter:
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http://www.virology.ws/2020/02/24/t...r-about-mahana-berkeleywellness-on-ibs-study/

Last week, BerkeleyWellness.com published a short article about the UK study at the root of the inflated claims that CBT is an effective treatment for IBS symptoms. The piece was blunt about the limitations of the findings. Here is the text:
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http://www.virology.ws/2020/02/24/t...r-about-mahana-berkeleywellness-on-ibs-study/
 
The issues are over misleading scientific claims, hence the need for information. A deflection over commercial interests is as meaningless as saying "you can't investigate possible wrongdoing since I'm making money from it and that would be prejudicial to my self-interest". They are making medical claims aimed at dispensing clinical advice, this isn't a simple matter of protecting business and it's an academic institution anyway, different requirements. This ain't a corner rub-and-tug where you can hide something in a back room.

It's an interesting notion, albeit ethically bankrupt, that you can't question misleading science if it aims to be commercialized. Even though of course commercializing misleading medical advice is obviously highly problematic. Now that's a gigantic loophole if I've ever seen one.

Because this is kind of similar to LP and generally the CBT/GET paradigm. The evidence simply isn't there, even though some misrepresentation of it was published in medical journals. But it's a commercial product, therefore not subject to the public interest since obviously more information would unravel the business. This is borderline mob level of skirting legal obligations while appearing to adhere to thanks to protection from secrecy.

Great example of evidence laundering. The findings in the papers are weak. The public claims have nothing to do with the findings, they present it as outlandishly more effective than it actually is (familiar territory, lots of experience). Those claims have "commercial interest" and become not subject to scientific scrutiny. They are lying about their own research. But the research itself is weak and muddied, so is unlikely to be retracted as it makes very weak claims. It's the misleading amplification of those claims that becomes a commercial product, by exaggerating baseless claims but now this is outside of the scientific process so it's not subject to the usual requirements and anyway it's a self-help thingy so has nothing to do with medicine, therefore exempt from stringent clinical requirements.

This is genuinely villainous. It's the same moral bankruptcy we are familiar with so not surprising but this is completely outside of the purpose of scientific research, medical research and, especially, academic institutions. And the refusal here is one of those obvious cases of having lots to hide.

Put a few bad apples in a bunch. Wait a few year and even the barrel falls apart.
 
rvallee said:
The issues are over misleading scientific claims, hence the need for information. A deflection over commercial interests is as meaningless as saying "you can't investigate possible wrongdoing since I'm making money from it and that would be prejudicial to my self-interest". They are making medical claims aimed at dispensing clinical advice, this isn't a simple matter of protecting business and it's an academic institution anyway, different requirements. This ain't a corner rub-and-tug where you can hide something in a back room.

It's an interesting notion, albeit ethically bankrupt, that you can't question misleading science if it aims to be commercialized. Even though of course commercializing misleading medical advice is obviously highly problematic. Now that's a gigantic loophole if I've ever seen one.

Because this is kind of similar to LP and generally the CBT/GET paradigm. The evidence simply isn't there, even though some misrepresentation of it was published in medical journals. But it's a commercial product, therefore not subject to the public interest since obviously more information would unravel the business. This is borderline mob level of skirting legal obligations while appearing to adhere to thanks to protection from secrecy.

Great example of evidence laundering. The findings in the papers are weak. The public claims have nothing to do with the findings, they present it as outlandishly more effective than it actually is (familiar territory, lots of experience). Those claims have "commercial interest" and become not subject to scientific scrutiny. They are lying about their own research. But the research itself is weak and muddied, so is unlikely to be retracted as it makes very weak claims. It's the misleading amplification of those claims that becomes a commercial product, by exaggerating baseless claims but now this is outside of the scientific process so it's not subject to the usual requirements and anyway it's a self-help thingy so has nothing to do with medicine, therefore exempt from stringent clinical requirements.

This is genuinely villainous. It's the same moral bankruptcy we are familiar with so not surprising but this is completely outside of the purpose of scientific research, medical research and, especially, academic institutions. And the refusal here is one of those obvious cases of having lots to hide.

Put a few bad apples in a bunch. Wait a few year and even the barrel falls apart.
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@Trish @Andy anyone got contacts in the APPG on ME? I just wonder if someone can suggest to a friendly MPs that they "report ---suggest---" that the Public Accounts Committee investigates this whole debacle and the role it played in formulating government policy.

I haven't read @rvallee post carefully but for some reason I recall a defence presented in court (by the defendant!) that they couldn't benefit from their own wrongdoing. With "good" legal advice these guys can come up with some strange defences. So these folks took £5 million in public money now they can't be scrutinised since what they did is covered by "commercial in confidence". As rvallee states Universities aren't generally considered as "commerce" quite an "own up" by these guys.

Has the freedom of information commissioner made any progress -- is that where the defence of commercial in confidence came in?

Possibly ask for the £5 million in public money --- if they are not prepared to provide information reasonably required in relation to the contract. Also, possibly if there's a threat to bar them from further contracts, because of their failure to provide information --- then they'll see the economic bigger picture! I guess this university has benefited from further government projects of this nature since then --- so they have something to lose!
 
Andy said:
Nope, sorry, my MP is a Minister in the government so wouldn't take an active part anyway, and I've never had the time, energy or inclination to attempt to interest him in engaging with the whole ME issue.
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Thanks for the laugh --- humour has underlying truth & I know what you mean about elected representatives!
 
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