Trial By Error: CBT and Irritable Bowel Syndrome

Arnie Pye said:
This tweet (from post #135) obviously didn't go down well - it's already been deleted.

Edit : I meant the link within the tweet, not the tweet itself. Sorry!
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the link was to an article by Rob Paull in @Medium but I can't find it

Dr Alice Sibelli (@AliceSibelli) | Twitter
twitter.com › alicesibelli
3 Apr 2020 - In this @Medium article, Rob Paull shares how his personal journey inspired him to create Mahana Therapeutics #digitaltherapeutics ...
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Sly Saint said:
the link was to an article by Rob Paull in @Medium but I can't find it
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Maybe the Tweeter confused something?(*)

Recent article on Medium by Windgassen:

How to Use Psychology for Better Bowel Function
Evidence-based techniques to reduce discomfort and anxiety from IBS and other intestinal distress

Code: 
https://medium.com/better-humans/how-to-use-psychology-for-better-bowel-function-175d8c42acc6

Paull has told his personal story already on his company's webiste: https://www.mahanatx.com/from-the-patients-for-the-patients

Edited to fix Medium link.

(*) Edit 2: They didn't. See following post by Andy.
 
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Yes that's the same article I read from the previous link. It seems he has a family member who has a very difficult to manage gut problem involving severe intractable constipation, and where no treatment has helped. They found psychotherapy helped, though it sounded like it helped the individual cope better and that may have led to some reduction in symptoms, it wasn't curative. From that and some other personal stories and some poor quality psych research he's extrapolated and thinks this is the best thing for all gut problems.
 
This seems like a genuine story, but I agree with Trish, it doesn't seem like it made a difference to the problem, just with the coping.
It does provide a good story about the severity of IBS and the necessity of finding a solution.

I don't believe the statistics (the link with depreson/anxiety), because they are also not correct in the ME research and I don't believe they are for IBS.
The reason these stories tend to annoy me a lot is because it seems that IBS is not that much of a mysterie. I had IBS (as part of ME) and I have found multiple solutions that solved the problem. I think the solution for most people is already out there, all with generic medications that are available everywhere, but there seems to be a lack of overview and the constant focus on psychosomatics doesn't help.
Maybe I'm biased, because I have found the solution ánd I never had depression or anxiety, so these stories wouldn't have helped my at all. Why cope with horrible painful constipation, if you can just solve it?
When I see how slow the whole system goes with a pretty simple problem like IBS, I am not looking forward to the same process with ME. I will take decades to find solutions.
 
unicorn7 said:
The reason these stories tend to annoy me a lot is because it seems that IBS is not that much of a mysterie. I had IBS (as part of ME) and I have found multiple solutions that solved the problem. I think the solution for most people is already out there, all with generic medications that are available everywhere,
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I don't think we can assume based on our own experience that all forms of IBS have readily available solutions.
 
Trish said:
I don't think we can assume based on our own experience that all forms of IBS have readily available solutions.
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Gotta agree with Trish here, I know you are doing pretty well unicorn and I can say my symptoms have definitely improved as well(from near death to at least feeling well for most of the day, though very inactive). But my IBS has far from gone away yet.
 
No, I don't think it is readily available now. I just feel that if all the current knowledge would be used in a strong clinical streamlined protocol (and people would agree on this!), we would be able to help 95% of people with IBS and we could set up a strong research program to solve the other 5% and get better results.
In this moment all the knowledge is loose sand and doctors are just trying some random stuff and then give up. It probably doesn't help that the psychosomatic crowd is breathing down their neck and doubting every medical solution.

My partner has IBS and I went with him to his appointments in a normal hospital. Althought they definitely didn't think it was psychosomatic, they didn't do any tests (other than the tests to make sure it wasn't something else) and just gave him two courses of very broad spectrum antibiotics. The doctor didn't even know what SIBO was. I am pretty confident his problem could be solved with the same doctor as I have, but unfortunately we don't have the money to go there with two people and his problem is of course less serious than my problem.

I just worry because IBS is a problem that is more clear cut ánd falls under one specialist and then still it all takes ages for knowledge to come through. ME is a much more complicated problem with all kinds of different specialties involved, to get all those parties together for a clinical protocol will be very hard.
 
Yes, I see no reason to doubt the sincerity of Mr Paull's story. I had mentioned it previous on Virology Blog, becasue he tells the same account on the Mahana website. But good intentions are not the same as good science. And his lack of response to the concerns demonstrates that he isn't all that concerned about the accuracy of the claims he's making.
 
This is the same problem that has dogged ME patients for decades. If it worked for me then it should work for everyone else, if only they would accept my word for it. If you wanted to get better you would try it. Of course, when they make a business out if it it also suits if not everyone improves because then you can sell them the new and improved version if your therapy du jour. Twice the earnings.

If there is no clear understanding of the underlying cause then you don't know if everyone's symptoms will be improved by the same therapy.

Even in relatively well understood diseases, treated with well known drugs, some drugs do not work for, or suit, some patients. Even if the underlying cause is the same, people are different.

Sometimes chronic conditions improve & it's often not very clear why. It may not be down to whatever the person happened to be trying at the time.
 
Invisible Woman said:
This is the same problem that has dogged ME patients for decades. If it worked for me then it should work for everyone else, if only they would accept my word for it. If you wanted to get better you would try it. Of course, when they make a business out if it it also suits if not everyone improves because then you can sell them the new and improved version if your therapy du jour. Twice the earnings.

If there is no clear understanding of the underlying cause then you don't know if everyone's symptoms will be improved by the same therapy.

Even in relatively well understood diseases, treated with well known drugs, some drugs do not work for, or suit, some patients. Even if the underlying cause is the same, people are different.

Sometimes chronic conditions improve & it's often not very clear why. It may not be down to whatever the person happened to be trying at the time.
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How dare you question the tiger-repelling properties of my tiger-repelling rock?! Do you see any tigers around? Do you? I rest my case.
 
dave30th said:
Yes, I see no reason to doubt the sincerity of Mr Paull's story. I had mentioned it previous on Virology Blog, becasue he tells the same account on the Mahana website. But good intentions are not the same as good science. And his lack of response to the concerns demonstrates that he isn't all that concerned about the accuracy of the claims he's making.
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I proceed with skeptical caution when I read accounts by family members on treatments having met one in the past who made claims that were not backed up by subsequently talking to the actual person with the health issue.

It says "From the Patients, For the Patient" but Mr Paul isn't a patient.
 
As far as I can gather th King's electric CBT for IBS is considered a hot topic by healthcare market vultures.

This raises the interesting question as towhead happens it is released as a commercial 'product', as seems be the idea.
Will it make money hand over fist or are Dr Holt's tweets an indication that it will be complete lame duck.
 
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