"Body Reprogramming: Patient guide for recovery using the Hyland model"

T

Three Chord Monty

Senior Member (Voting Rights)
I'm not exactly sure this is the right subforum for this but it sure doesn't seem like it should go in the biomedical area. Based on a quick skim it seems like a sort of general wellness guide wrapped up in a sort of systems biology packaging, with something like CBT and/or NLP (lots of stuff about thinking positively, safe spaces, and so forth), and a good dollup of exercise thrown in for good measure. I came across this first:

"Using artificial intelligence to understand irritable bowel syndrome, chronic fatigue syndrome and fibromyalgia syndrome"

https://atlasofscience.org/using-ar...c-fatigue-syndrome-and-fibromyalgia-syndrome/

The body is proposed as an adaptive network, blah blah, it would sound okay, perhaps, but for the immediate invocation of 'functional disorders' and MUS. Not sure I read AI into this, but whatever. This paper is linked, which was published over a year ago:

A test of the adaptive network explanation of functional disorders using a machine learning analysis of symptoms

https://www.sciencedirect.com/science/article/pii/S0303264717302435?via=ihub

1751 patients with IBS, FMS, or CFS, custom-designed 61-item questionnaire...patients 'self-reported' their diagnosis. Then I took a look at the website mentioned (not linked) in the Atlas of Science article.

http://www.bodyreprogramming.org/default.aspx

It claims this is a course provided by the NHS, but I didn't see it anywhere on there. There are a couple of videos, and they claim they're working on this for a research project. Then there's this link to their pdf.

http://www.bodyreprogramming.org/PatientGuide.pdf

I don't see any indication that they're selling anything, but, this seems to involve the 'principles' of the 'course,' and, again, all I gave this was a brief skim. Not so much in here about ME/CFS, here it's more about IBS and Fibromyalgia as Central Sensitivity Syndromes.

"Sometimes when you overdo an activity –for example, too much walking– you feel exhausted the next day and the following days you don’t feel much better. If you notice a consistent deterioration in what you are able to do over a period of time then you are almost certainly over-doing things. If you are sure that you are not over-doing an activity, the deterioration may occur as a result of doing too little."


There's a lot of garbage in here I almost can't even bear to bring myself to quote. Pain medication bad, repurposed antidepressants good...for all the hifalutin verbiage on the Atlas of Science page--not that I trusted anything that started in so definitively with 'functional disorders,' but still--this seems a long way off from that, almost like something you'd see from a lifestyle guru like Andrew Weil or someone like that. 'Eat slowly, chew your food.' 'People with ME/CFS are nice people.' Yes, that's really in there. 'Speak to yourself using your name. Suppose your name is Susan.' 'Choose friends who make you happy.'

Really?
 
Fibromyalgia and central sensitivity syndromes are caused by a faulty program, a stop program. The stop program is equivalent to a computer virus. The stop program generates symptoms that stop you doing things.
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Pseudoscientific horseshit of the highest order. These idiots have lost their minds and need to be kept as far away as possible from sick people.

People who try to do their best are particularly prone to getting central sensitivity syndromes.
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Uh, so the NHS is fine with just making stuff up like that? This claim has all the evidence base of a rancid fart.

The stop program is triggered by lifestyle
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Uh, uh. Pain, nausea, "fatigue" (or whatever it is they mean when they use that word), it's all the fault of your lifestyle. Evidence? We don't need no stinking evidence. We'll just make it up and leave it at that. Who cares anyway?

Try to avoid watching horror or violent films. Your body may not be able to distinguish between what happens on the television and what happens to you.
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WTAF? This almost seems like projection coming from people who keep describing things that do not exist and insist that they absolutely see these things and that you're the one who's crazy for not seeing them. By the way I'm confused I saw a horse on the TV and now I'm trying to eat hay, please send help!

Eat slowly, chew your food
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Oh, good. How could anyone survive without this quality advice? Here I am trying to do like a snake and slither around my food whole. Thanks NHS, you just saved my life by reminding me to chew my food and now I won't choke to death!

Sometimes when you overdo an activity – for example, too much walking – you feel exhausted the next day and the following days you don’t feel much better. If you notice a consistent deterioration in what you are able to do over a period of time then you are almost certainly over-doing things.
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This is 100% not normal. A healthy person does not feel wiped out the next day after too much walking. "Doing too much" is overtraining syndrome and it is not reached by just walking too much. Holy crap these people.

Have a conversation with your body – tell it that pain isn’t needed any more.
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Shut this all down and fire everyone who participated in this, never allow them to practice medicine ever again.

People who develop central sensitivity syndromes often put others first. People with fibromyalgia and ME/CFS are ‘nice people’.
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Hear it, folks? We're 'nice people'. And that's why we're sick. Oh, sorry, we're "sick". Don't be too nice, now, or you'll pull your back or something.

Why not just replace the whole of medicine with a coupon for goop.com and a Deepak Chopra seminar? Hopefully this is peak stupid and no one can top that, but that may be a bit optimistic.
 
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Just shows the dangers of letting a bunch of psychologists and computer folk with no understanding of biology loose on a set of questionnaire data from people with a complex biological illness. GIGO (garbage in, garbage out).

Treatment seems from a quick glance through to be a vague version of pacing wrapped up in an indigestible pile of added psychobabble and positive thinking.
 
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One of these days I want to teach a computer how to generate these kinds of articles. Then post it somewhere public and see if there is enthusiastic support for it. :D (okay that's more daydreaming than a real plan, please bear with me)
 
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Just because this tripe is likely to be removed with embarrassment in the future, might as well preserve this "thing of beauty" for posterity.

The Atlas thing on the "machine learning" is complete garbage as well. It shows that symptoms follow severity (duh) but decides that this is evidence that network theory is the best model. I guess it's because reasons. Who cares? Let's just make stuff up. Nobody likes those patients anyway.
 

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One feature of networks is that they can adapt or learn by changing the causal connections between the nodes of the network – this happens in machine learning. Hyland’s theory proposes that the body is an adaptive network and adapts to particular types and combinations of events in a person’s life.

How is it they don't realise how utterly vague this statement is; to the point of saying nothing in particular.
 
JemPD said:
Someone who is 'very ill' with ME cant even sit up, never mind do exercises while sitting, let alone stand, let alone walk.... let alone walk while focusing on something else!!!
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I know it's a difficult issue around declaring one or another person has/has not ME. But the more I read of the stories out there the more I see the same category error. They inevitably talk of being very (severely) ill (no doubt they felt that way) but then as they go on about it it's made very clear that they were nothing like severe as it would be described for someone with ME. Perhaps they did have ME that was mild -- as we know even mild is life limiting. However you look at it I find that the only conclusion that can be drawn from what they themselves write is that they have no idea about what ME is really.

This may be an issue on which we might want to advocate on specifically. Pointing out that (quoting myself from another thread) ME is about abnormal fatigability & inability to produce energy.
 
rvallee said:
Pseudoscientific horseshit of the highest order. These idiots have lost their minds and need to be kept as far away as possible from sick people.


Uh, so the NHS is fine with just making stuff up like that? This claim has all the evidence base of a rancid fart.


Uh, uh. Pain, nausea, "fatigue" (or whatever it is they mean when they use that word), it's all the fault of your lifestyle. Evidence? We don't need no stinking evidence. We'll just make it up and leave it at that. Who cares anyway?


WTAF? This almost seems like projection coming from people who keep describing things that do not exist and insist that they absolutely see these things and that you're the one who's crazy for not seeing them. By the way I'm confused I saw a horse on the TV and now I'm trying to eat hay, please send help!


Oh, good. How could anyone survive without this quality advice? Here I am trying to do like a snake and slither around my food whole. Thanks NHS, you just saved my life by reminding me to chew my food and now I won't choke to death!


This is 100% not normal. A healthy person does not feel wiped out the next day after too much walking. "Doing too much" is overtraining syndrome and it is not reached by just walking too much. Holy crap these people.


Shut this all down and fire everyone who participated in this, never allow them to practice medicine ever again.


Hear it, folks? We're 'nice people'. And that's why we're sick. Oh, sorry, we're "sick". Don't be too nice, now, or you'll pull your back or something.

Why not just replace the whole of medicine with a coupon for goop.com and a Deepak Chopra seminar? Hopefully this is peak stupid and no one can top that, but that may be a bit optimistic.
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As a person with moderate to severe fibro, I thank you @rvallee for your vehement rebuttals. I cannot believe this airy fairy shite. Has Paltrow et Goop wandered into AI wellness theorizing?
 
Sean said:
Well it makes a change from being called a dangerous activist, I guess.
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And Michael Hyland, et al, are at a dangerously low point in an IQ range of normal. My god, who gave this a green light? Why not invite aliens to venture a theory or two.
 
rvallee said:
Pseudoscientific horseshit of the highest order. These idiots have lost their minds and need to be kept as far away as possible from sick people.


Uh, so the NHS is fine with just making stuff up like that? This claim has all the evidence base of a rancid fart.


Uh, uh. Pain, nausea, "fatigue" (or whatever it is they mean when they use that word), it's all the fault of your lifestyle. Evidence? We don't need no stinking evidence. We'll just make it up and leave it at that. Who cares anyway?


WTAF? This almost seems like projection coming from people who keep describing things that do not exist and insist that they absolutely see these things and that you're the one who's crazy for not seeing them. By the way I'm confused I saw a horse on the TV and now I'm trying to eat hay, please send help!


Oh, good. How could anyone survive without this quality advice? Here I am trying to do like a snake and slither around my food whole. Thanks NHS, you just saved my life by reminding me to chew my food and now I won't choke to death!


This is 100% not normal. A healthy person does not feel wiped out the next day after too much walking. "Doing too much" is overtraining syndrome and it is not reached by just walking too much. Holy crap these people.


Shut this all down and fire everyone who participated in this, never allow them to practice medicine ever again.


Hear it, folks? We're 'nice people'. And that's why we're sick. Oh, sorry, we're "sick". Don't be too nice, now, or you'll pull your back or something.

Why not just replace the whole of medicine with a coupon for goop.com and a Deepak Chopra seminar? Hopefully this is peak stupid and no one can top that, but that may be a bit optimistic.
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Sounds like my dog wrote this.
 
Snowdrop said:
One feature of networks is that they can adapt or learn by changing the causal connections between the nodes of the network – this happens in machine learning. Hyland’s theory proposes that the body is an adaptive network and adapts to particular types and combinations of events in a person’s life.

How is it they don't realise how utterly vague this statement is; to the point of saying nothing in particular.
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The problem IS that the body is not "adapting" (whatever that is). It is not self-correcting in ME nor fibromyaglia. That's the problem. Not the patient. The illness is the problem.
 
shak8 said:
As a person with moderate to severe fibro, I thank you @rvallee for your vehement rebuttals. I cannot believe this airy fairy shite. Has Paltrow et Goop wandered into AI wellness theorizing?
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The AI part of the study is completely irrelevant here. It just gives an air of serious mathemagic for what is basically trying to find correlations and passing them as causations.

Machine learning is a tough skill to master and is highly dependent on decisions made. I cannot program anymore but follow closely the field. You don't just feed some neutral machine learning (ML) algorithm data and figure out what it tells you. A lot of the process is fine-tuning, deciding what data to use, finding the right gradient descent paths that give you an optimal answer.

Basically, ML is heavily a garbage in garbage out process. Bad data, bias, outcome seeking and cherry-picking can give you any answer you want. This is a subjective questionnaire and whoever did the design was seeking an outcome. It's like creating a very elaborate process to pretend to make a consensus decision when ultimately one person just chooses whatever they want in the end.

Quacks. Quacks everywhere and now given legitimacy by the NHS.
 
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Body Reprogramming
Some patients have multiple symptoms, for example, widespread pain, fatigue, mental fog, stomach problems, poor sleep, and sensitivity to bright lights and noise. Often, when they seek help from a doctor they are not provided with a clear explanation for their symptoms. Some patients are given a diagnosis such as central sensitivity syndrome, or medical unexplained symptoms or fibromyalgia. Other patients have multiple diagnoses, for example, fibromyalgia with irritable bowel syndrome. These diagnoses can be confusing and often raise more questions than answers. Patients will often say that their doctor seems to know as little about the condition as they themselves.
Body reprogramming is for those patients with a long term condition, such as central sensitivity syndrome or fibromyalgia and are seeking to understand this condition better.
What is body reprogramming?
Body reprogramming is a course provided by the NHS which is designed to help people with a central sensitivity syndrome, such as, fibromyalgia. It provides an understanding of the condition and how best to manage it to improve health. Body reprogramming comes from a new way of thinking about the body, called ‘the Hyland model’. The model is based on the founding principles of systems biology and complexity theory and where the body is understood as a biologically intelligent system.

An exciting feature is that that over 50 patients with central sensitivity syndrome and fibromyalgia have helped bring the conceptual model to life in the form of a body reprogramming course.
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https://www.plymouthhospitals.nhs.uk/body-reprogramming
 
The Hyland model is just a rephrasing of the CBT/GET model. Applied to fibromyalgia patients though.

The software problem is caused by the body adapting when people have to ‘keep going’ despite ‘stop signals’, such as pain and fatigue. The narrative provides a rationale for engaging in psychological and exercise interventions as a way of correcting the body’s software.
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This explanation isn't very clear but it sounds like stopping activities due to symptoms is considered a faulty behaviour.

A recurring obstacle facing clinicians is that patients appear unwilling to adopt the recommended lifestyle interventions because they fail to comprehend the rationale for why such interventions should be helpful.
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Or maybe that's your interpretation and these lifestyle interventions aren't being adopted because they aren't actually helpful.

Maybe for FM this is viable? Who knows.
 
Apart from all the issues with this, can anybody explain what this part actually means? I assume the double use of "that" is meant to highlight the excitement??
An exciting feature is that that over 50 patients with central sensitivity syndrome and fibromyalgia have helped bring the conceptual model to life in the form of a body reprogramming course.
Click to expand...
 
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