Lessons to learn from treating IBS?

U

unicorn7

Senior Member (Voting Rights)
I have been reading a lot about BPS and MUS theories lately. Not really because it affects me personally, but because I find these theories weirdly interesting and also a bit shocking to read.

I thought it was interesting to look at other MUS categories, to see if we maybe could learn something about the way they are being handled. Apparently there is a lot of MUS around, like lower back pain and IBS. Both, in my eyes, perfectly treatable and organic problems.

I thought IBS was a nice example to think about because there is a lot of ME/CFS people with IBS. I read this article:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4692018/

It seems it has a lot of the same problems as in ME/CFS. There is a lot of research on the medical aspect. There is also a lot of research on the psychosocial aspect. It's probably a few different diseases, lumped together.

There are a few nice strategies and medications for IBS (testing microbiome, FODMAP, antibiotics like rifaximine, neomycin), but nothing helps everyone if everyone is lumped in the IBS diagnosis. Apparently that is reason to reject the thought, instead of doing research on what makes these groups different.

When I read this article, my only conclusion is: this is an organic problem. The conclusion of the article is: we can't call IBS a pure functional problem anymore. Why call it a functional problem at all? The evidence for the psychosocial factors as a cause is incredibly weak.

IBS is actually a lot more simple than ME/CFS to make a solid theory, test it, make a protocol on specific testing and medication for gastrointestinal-specialists and actually help people, but people (doctors, insurance?) still want to hang on to the BPS-idea.

So what does it take for something to become mainstream? When research comes up with an good organic explanation for ME/CFS, how can we make it mainstream as quickly as possible, not only available for the richer people who can actually afford private doctors.

I'm actually pretty sure they will find a solution for ME/CFS soon, but I am really worried that it will take another 30 years before it becomes mainstream and people will actually be treated in their local hospital.
 
Good thoughts, @unicorn7.

Its interesting that you chose IBS as a sort of "test case" for the BPS model. I agree its a really good example.

I don't think the BPS people ever "leave" any illness. They continue to find a place for themselves, even after an organic cause has been found for the illness. As long as there's one or two symptoms that are not entirely predictable from biomarkers, they can always claim space for psychosocial factors.

For example, they consider fatigue in multiple sclerosis and lupus to be psychosocial. They argue that the symptom of fatigue is not fully explained by the disease itself (because its variable across people and not strongly correlated with any particular biomarker). So therefore, there's a "psychological component".

And then even if there's no specific symptom they can latch onto, they often still find a place to insert themselves. Like claiming that cancer patients that are too "negative" will have weaker immune systems and not be as good at fighting the cancer. Of course, being positive has no effect at all on cancer progression. But these people have conducted lots of really weak and biased research studies that say the opposite, and they are going to keep on citing them, while ignoring any research that says the opposite.

I've seen a lot lately about rheumatoid arthritis. The BPS school take the view that patients often have an unacceptably negative attitude, which contributes to their symptoms. To support this claim, they do studies to show that those with worse symptoms are also (surprise, surprise) less happy about their symptoms! The BPS folks think these patients need to be taught to think more positively for their own good. I was really outraged by that. HOW DARE they judge anybody's reaction to a chronic illness! Everyone should be allowed to react to bad stuff in whatever way they choose. If you want to help patients feel less negative, do something practical to help them. Don't tell them how they should think.

On the more positive side, I suppose as a disease gets more and more accepted, psychosocial theories start to be considered more and more "fringe". So there is a subtle shift in public perception over time.

However, I think researchers and doctors shouldn't just be quietly dismissing this stuff. They should be actively pointing out its weaknesses. Otherwise these people just move on to another poor group of patients and the pattern repeats itself all over again.
 
Woolie said:
For example, they consider fatigue in multiple sclerosis and lupus to be psychosocial. They argue that the symptom of fatigue is not fully explained by the disease itself (because its variable across people and not strongly correlated with any particular biomarker). So therefore, there's a "psychological component".
Click to expand...

This kind of reminds me of something Francis Collins said on The Charlie Rose Show when he "announced" that the NIH was going to look more deeply into ME/CFS. As part of making the case for looking into ME/CFS, he said something along the lines of that doing so might help them to understand the "fatigue" component of other illnesses, like cancer. It seems as though the mechanism of "fatigue" is not well understood in many diseases, not just ME/CFS. It would be interesting if there were some common, yet unknown mechanisms for "fatigue" underlying disparate diseases.

Such unstudied areas is where psychology becomes the "god of the gaps," explaining all that is unknown - until it isn't.
 
In this context it is interesting to note that Prof Paul Little of the University of Southampton is a member of the MEGA Team and is also currently leading large scale research in the use of CBT and exercise as treatment for IBS, see https://www.southampton.ac.uk/medicine/about/staff/psl3.page and http://www.megaresearch.me.uk/mega-team/

Details of this research can be seen at https://www.southampton.ac.uk/medicine/academic_units/projects/actib.page and https://eprints.soton.ac.uk/379324/

Assessing Cognitive Behavioural Therapy in Irritable Bowel (ACTIB): protocol for a randomised controlled trial of clinical-effectiveness and cost-effectiveness of therapist delivered cognitive behavioural therapy and web-based self-management in irritable bowel syndrome in adults

With the text of this article being available here https://eprints.soton.ac.uk/379324/1/e008622.full.pdf

The parallels of the theory of a condition triggered by an initial infection but maintained by 'false cognitions', the focus on evaluating service delivery rather than adequately evaluating the theoretical underpinning and the methodology are strikingly similar to that of PACE and subsequent studies, are of particular interest.
 
Peter Trewhitt said:
Prof Paul Little of the University of Southampton is a member of the MEGA Team
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It is worrying that the MEGA Team seem to remain squarely behind Exther Crawley declining to comment on the methodological flaws of her PACE based research and her slander of the ME Association and by implication of their Medical Advisor Dr Charles Shepherd, a fellow Mega Team member, on Radio 4. Prof Little another MEGA Team member is conducting apparently methodologically very similar work to Prof Crawley.

Potentially this research into CBT and IBS has many of the flaws of PACE, relying on an untested disease/illness model, raising the question is the subject sample a homogenous group and using an unblinded trial with self reported outcome measures. It may be that there will be no outcome switching and that the various IBS questionnaires are potentially less influenced by any placebo effect, but I suspect a researcher seeking to replicate in another field such a discredited research approach needs to be watched very carefully.
 
Trish said:
Wessely, Chalder et al paper from 2006.
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So there is definite overlap between the proponents of CBT in IBS research and in ME/CFS research and both use a specially designed form CBT to try to convince participants that they have a false understanding of their condition. Prof Little's outline of his study (see Everitt et al, 2015, link above) also cites PACE in his references and Trudie Chalder also appears in the list of its authors.

Is there a much larger 'Blarite' school of thought spanning a number of conditions in British academia that focuses on models of service delivery and cost effectiveness, with an ideological bias of blaming the patient and a very selective use of research to allow inadequately evaluated illness models?

Added after first posting - Is this confined to the conditions being eyed up for the MUS empire building or is it wider than that? Is it attracted to devising components of treatment that can be contracted out or provided by 'therapists' trained only in a limited skill set and ideally provided online?
 
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Peter Trewhitt said:
Is there a much larger 'Blarite' school of thought spanning a number of conditions in British academia that focuses on models of service delivery and cost effectiveness, with an ideological bias of blaming the patient and a very selective use of research to allow inadequately evaluated illness models?
Click to expand...

I think there is. It's not just Blairite, though it definitely became more noticeable, to me anyway, during this period of time.

If my recollection is correct that is when the benefit system reforms started or became obvious.
 
MEMarge said:
I think they are planning to expand their IAPT (Increasing Access to Psychological Therapies) to all sorts of long-term conditions where the aetiology is understood.
These include diabetes, asthma, mitral valve problems......
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Yes - the bloody irony. Increasing access to psych therapies when many patients with long term disorders have problems just getting access to the hospital clinics they need. Poor public transport, not enough car parking, paying for parking when on a limited income etc.

Then there's the delay before patients can actually be seen by the relevant clinic after referral.....
 
MEMarge said:
I think they are planning to expand their IAPT (Increasing Access to Psychological Therapies) to all sorts of long-term conditions where the aetiology is understood.
These include diabetes, asthma, mitral valve problems......
Click to expand...

I think it's not that bad, but it all comes down to two things:
They should not give you psychological therapies instead of organic ones. So it should be a complementary service.
They should not be telling you what you do or do not feel. You should be able to ask for therapy yourself when you have the feeling you have difficulty dealing with your chronic disease.

If you would extrapolate it to diabetes for example: No one is taking their insuline away, or thinking you can cure diabetes with some positive thinking.
If you did suddenly get diabetes and you are doing fine with it, no one will tell you that you are not fine with it. Everyone will be happy for you: "Nice that you have adapted so well" and no one will force you to get therapy. If your doing fine with it, but your blood sugars keep going crazy, they will actually look at your bloodsugars first thing, and not put you in therapy for not having your bloodsugars behave...

I have a relative with pretty severe IBS, when she goes somewhere by car, she sometimes takes a garbage bag to sit on, just in case she has explosive diarrhea suddenly... I think it's crazy to think that anyone would NOT get a bit stressed from that.
 
unicorn7 said:
I think it's not that bad, but it all comes down to two things:
They should not give you psychological therapies instead of organic ones. So it should be a complementary service.
They should not be telling you what you do or do not feel. You should be able to ask for therapy yourself when you have the feeling you have difficulty dealing with your chronic disease.
Click to expand...

Agreed. I have family members who were diagnosed with diabetes as children and these services were for kids who were struggling to adapt and were very supportive.

But here's the twist: this IAPT is not necessarily just referring to this type of service. The way they plan to handle MUS will mean that your (unknown/undiagnosed) condition will be treated as primarily psych. It will not be an additional, bolt on extra. It will be used to deny patients access to medical treatments they need.

Eta: in the diabetes situation these psychs were actually located within the diabetic clinic. There were experts in diabetes on hand. The MUS clinics will be discrete units in their own right.
 
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Woolie said:
I don't think the BPS people ever "leave" any illness. They continue to find a place for themselves, even after an organic cause has been found for the illness. As long as there's one or two symptoms that are not entirely predictable from biomarkers, they can always claim space for psychosocial factors.
Click to expand...
Somehow the word 'parasitic' crosses my mind.
 
Peter Trewhitt said:
Is there a much larger 'Blarite' school of thought spanning a number of conditions in British academia that focuses on models of service delivery and cost effectiveness, with an ideological bias of blaming the patient and a very selective use of research to allow inadequately evaluated illness models?
Click to expand...
I think the BPS proponents really believe that a huge portion of illness is having the wrong thoughts, feelings and behaviours. Its just that recently, they have learned their work gets more attention if they make a point of highlighting the economic benefits of this perspective.
 
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