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

Discussion in 'PsychoSocial ME/CFS News' started by Three Chord Monty, Feb 6, 2019.

  1. Three Chord Monty

    Three Chord Monty Senior Member (Voting Rights)

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    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?
     
  2. rvallee

    rvallee Senior Member (Voting Rights)

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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.

    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.
     
    Last edited: Feb 6, 2019
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  3. Trish

    Trish Moderator Staff Member

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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.
     
    Last edited: Feb 6, 2019
  4. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    The problem with machine learning is that it isn't very useful with limited range of useful data. As Trish said, GIGO...

    Studies that rely primarily on questionnaires are junk, period.

    It's clear they want to make generalisations without any evidence...

     
    Last edited: Feb 6, 2019
  5. strategist

    strategist Senior Member (Voting Rights)

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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)
     
    Last edited: Feb 6, 2019
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  6. Sean

    Sean Senior Member (Voting Rights)

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    Well it makes a change from being called a dangerous activist, I guess.
     
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  7. rvallee

    rvallee Senior Member (Voting Rights)

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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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  8. Cheshire

    Cheshire Moderator Staff Member

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    Heads, I win. Tails, you lose.
     
    Last edited: Feb 6, 2019
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  9. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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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.
     
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  10. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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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.
     
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  11. shak8

    shak8 Senior Member (Voting Rights)

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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?
     
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  12. shak8

    shak8 Senior Member (Voting Rights)

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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.
     
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  13. shak8

    shak8 Senior Member (Voting Rights)

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    Sounds like my dog wrote this.
     
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  14. shak8

    shak8 Senior Member (Voting Rights)

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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.
     
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  15. rvallee

    rvallee Senior Member (Voting Rights)

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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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  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    https://www.plymouthhospitals.nhs.uk/body-reprogramming
     
  17. strategist

    strategist Senior Member (Voting Rights)

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    The Hyland model is just a rephrasing of the CBT/GET model. Applied to fibromyalgia patients though.

    This explanation isn't very clear but it sounds like stopping activities due to symptoms is considered a faulty behaviour.

    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.
     
  18. Andy

    Andy Committee Member (& Outreach when energy allows)

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    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??
     
  19. NelliePledge

    NelliePledge Moderator Staff Member

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    Is central sensitivity syndrome an actual diagnosis or is it made up like Fink
     
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  20. MEMarge

    MEMarge Senior Member (Voting Rights)

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