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United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

Discussion in 'News from organisations' started by Andy, Mar 6, 2018.

  1. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    The science behind FND is just so woolly. 'Erm, signals, signals, something, conversion, hysteria, signals.'

    I have no doubt signalling issues are involved in ME (central fatigue, perhaps sensory gating issues), but it's more complicated than, 'Your brain is confused. You think you're having neurological symptoms, but there's nothing wrong with your brain.'
     
    MEMarge, Hutan, mango and 7 others like this.
  2. Solstice

    Solstice Senior Member (Voting Rights)

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    1,154
    Then why is my brain confused?
     
    MEMarge, Invisible Woman and Hutan like this.
  3. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Being confused and having confused brain 'signals' are two different things.
     
  4. Woolie

    Woolie Senior Member

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    2,918
    @Jonathan Edwards, I just saw your comment about the Edwards et al predictive coding model. Please allow me the honour of summarising it for you!

    Predictive coding is all the rage at the moment in cognitive neuroscience, so these authors decided they would borrow from that literature to create a "scientific" account of functional movement disorders. It is one of the finest examples of neurobabble I've ever seen.

    The model goes like this:

    1. Predictive coding approaches view organisms not as passive processors of incoming info, but as active predictors of what is likely to happen next. Organisms are innately driven to make their predictions as precise as possible. We don't "like" to be wrong about out predictions, so when we get it wrong and we get a nasty surprise, we adjust our future predictions so that won't happen again. So if you're wearing heavy boots and you accidentally trip on the stairs (woops, predicted I'd make that step, didn't expect that, not nice!), you adjust that movement next time to avoid that happening.

    2. People with FND have formed a powerful expectation that they cannot move some part of their body in a normal way. This expectation need not be a conscious belief, but it must be a powerful expectation. Maybe they really couldn't move it for a while (maybe they broke their leg?), who knows, anyway, they formed that expectation somehow.

    3. Given that a mismatch between prediction and reality is an aversive state for the organism, we are powerfully driven to reduce nasty surprises. So if you very powerfully, strongly believe that your legs tremble, discovering they don't would be a great surprise indeed. To avoid the inherent aversiveness of such a surprise, the FND patient unconsciously adjusts their movement to fit their expectation.

    4. Hey presto, there you have it! A movement disorder without any organic basis!

    5. But wait! Right now, you're thinking, "But yea, people recover from movement problems all the time - like broken legs and stuff. So we're all capable of adjusting our expectations when reality not longer fits them. What's so different about FND?" Well, it's good you asked because the difference is that FND patients have formed an abnormally strong and unshakeable belief that they have a permanent disability.

    6. But wait! Now, you're thinking, "But why does the belief get this strong in the first place?" Answer: because FND patients have a psychological dysfunction that makes their beliefs in their disorder unshakeable - they are overly anxious, overly depressed or overly focused on their own bodily sensations.

    Hey, look what happened there - we did a full circle and came back right where we started - to a psychological explanation!

    We also violated the very core of predictive coding models - they emphasise the evolutionary importance of aligning our predictions with reality, not the other way around!

    Its priceless.
     
    Last edited: Apr 25, 2018
    lunarainbows, Hutan, MEMarge and 14 others like this.
  5. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    5,234
    Then patients have their beliefs questioned, re-evaluate them and end up with even stronger beliefs and a desire to correct the misconception that their illness is merely a belief. Which then appears to support the idea that patients have particularly strong illness beliefs.

    The context matters.
     
    lunarainbows, Woolie, MEMarge and 4 others like this.
  6. Andy

    Andy Committee Member

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    21,810
    Location:
    Hampshire, UK
    Anybody here with spare capacity to apply for this?
    https://www.actionforme.org.uk/news/applications-invited-for-cmrc-patient-advisory-group/
     
  7. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    3,637
    Do we know if the problems/issues that existed when this group was initially set up have been resolved?

    Obviously the Board members mentioned are reassuring.
     
    Inara, rvallee, MSEsperanza and 3 others like this.
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Location:
    UK
    @phil_in_bristol (CMRC PAG member) might be able to answer questions on this(?)
     
  9. chrisb

    chrisb Senior Member (Voting Rights)

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    4,602
    Who selects the selectors?
     
    MSEsperanza likes this.
  10. NelliePledge

    NelliePledge Moderator Staff Member

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    13,142
    Location:
    UK West Midlands
    Binkie4, MSEsperanza and Barry like this.
  11. Adrian

    Adrian Administrator Staff Member

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    I thought the document felt quite strange and not very encouraging and was detailed in some working practices but didn't give a good overview (hence missing things like how meetings happen). Also I'm not keep on the use of a phone bridge things like skype of zoom are much easier to use.

    Its also not clear if travel is necessary (personally I don't travel but I do a lot via video conference and so its not clear if that is an option).

    Having said that I am thinking of applying.
     
  12. Barry

    Barry Senior Member (Voting Rights)

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    Very good :).
     
  13. phil_scottish_borders

    phil_scottish_borders Established Member (Voting Rights)

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    Location:
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    Hi - yes I will come back t this shortly! I am still on the PAG for CMRC.
     
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  14. phil_scottish_borders

    phil_scottish_borders Established Member (Voting Rights)

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    Location:
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    Board meetings are held in London (there's one next month), and there was one very early this year in Southampton (at the main hospital). PAG reps have an expenses budget for travel. We are actively encouraged to go, as patient reps, and in fact in January (Southampton) there were FIVE of us there. (not sure how that happened!!!!)
     
  15. NelliePledge

    NelliePledge Moderator Staff Member

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    Location:
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    Ok thanks where about in London?
     
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  16. phil_scottish_borders

    phil_scottish_borders Established Member (Voting Rights)

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    Location:
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    not sure - the email I found said "the MRC building" - don't know offhand if this is the MRC London Institute of Medical Sciences or the MRC at One Kemble Street.
     
    MEMarge likes this.
  17. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Bump! deadline for this is 7 November, ie Wed.

    @Adrian are you applying?
     
  18. MEMarge

    MEMarge Senior Member (Voting Rights)

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  19. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Location:
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  20. Adrian

    Adrian Administrator Staff Member

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    Location:
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    Thanks for reminding me. I had completely forgotten. I will try to put something together tonight or tomorrow.
     

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