A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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[trivial] Deary etc presentation @ Royal College of Physicians

Discussion in 'Latest ME/CFS Research' started by Esther12, Dec 5, 2015.

  1. Esther12

    Esther12 Senior Member

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    I really dislike Deary, and think his videos on how to manage CFS patients are some of the vilest things I've seen in recent years. This will not be a fair reading of his presentation, but I thought I'd pull some bits out. Nothing very interesting, and here's a link to the whole thing in case anyone else is interested.

    https://www.rcplondon.ac.uk/file/2177/download?token=pIT1Eu2Y

    Part of the Persistent Physical Symptoms project.

    There seems to be some desperate spin about at the moment to imply patients love the PPS terminology, eg:

    They say:

    I wonder if their research will lead to them deciding they've really messed things up? Seems like there's some room for bias here:

    I hope it was Deary who came up with 'existential narrowing': please don't let there be more than one person as terrible as him alive at the same point of time.

    They say:

    Is that a new book? Google brought nothing up for it. Yipee - they've got a solid, evidence based explanation for out symptoms. The mystery is solved.

    Their findings are not exciting. We can look forward to more stories:

    Is there any evidence of efficacy? Do we really want GPs feeling more confident with their attempts to tinker with patient's subconscious?

    They might not really get worse, but just be desperate to tick DWP's increasingly crazy tick-box criteria:

    I've no idea what the Durham Wrap is - apparently it works.

    Thought for commissioners: stop funding services if they're no more effective than a placebo.

     
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  2. SOC

    SOC Senior Member

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    :vomit:
     
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  3. Sean

    Sean Senior Member

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    Well, we can agree on that, at least.
     
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  4. Esther12

    Esther12 Senior Member

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    That was just for them, to share the findings that they want. From their interpretations of some interviews. Personally, I'd prefer it if they kept it to themselves.
     
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  5. SOC

    SOC Senior Member

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    Yeah, I noticed they didn't say 'sharing data' or 'sharing results'. They only want to share their findings, ie their conclusions, which may or may not be based on any actual facts. The PACE authors, for example, are happy to share their 'findings' (read: shove them down everyone's throats). They just don't want to have to explain where they got those findings from... on what they based their conclusions. :rolleyes:
     
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  6. Sean

    Sean Senior Member

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    A tempting thought, I grant you. :whistle:
     
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  7. Sidereal

    Sidereal Senior Member

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    20% of the population lol
     
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  8. SOC

    SOC Senior Member

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    Whoa, I missed that the first time.
    Is he saying 20% of the UK population gets some form of disability payment based on Persistent Physical Symptoms? :eek: When you add in the people with severe mental disabilities, disabling back injuries, quadraplegia, etc, etc, etc just what percentage of the UK population is on disability? 50%? More? This seems incredibly unlikely. I must be missing something.
     
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  9. Sidereal

    Sidereal Senior Member

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    Well, we do have a sickening nanny state over here but the 20% figure must be referring to something else. Perhaps he means that 20% of the population have one or more MUS which can be disabling in some of those cases.
     
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  10. SOC

    SOC Senior Member

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    I'd buy that, but then what is the cost estimate related to if it's not disability services? o_O That's freakin' lot of money going somewhere.
     
  11. Woolie

    Woolie Senior Member

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    Aah, PPS... The game continues, of trying to find the best way to lie to patients. Would be nice to sit down and count the number of "scholarly" articles that have addresed the weighty issue of how to "package" a psychogenic diagnosis to make it "palatable" to us patients (i.e. so it sounds like we're being taken seriously when we're not).
     
    Last edited: Dec 8, 2015
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  12. SOC

    SOC Senior Member

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    What a bunch of sickos... writing so-called academic pieces about how to lie to and manipulate sick people for fun and profit.
     
  13. Woolie

    Woolie Senior Member

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    Generally, its very carefully worded to conceal the underlying theoretical framework. But there are still some gems from Deary and his mates:

     
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  14. Sean

    Sean Senior Member

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    So you claim.
     
  15. Valentijn

    Valentijn Senior Member

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    Forget false illness beliefs. These people seem obsessed with false cycle beliefs :rolleyes:
     
  16. SOC

    SOC Senior Member

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    Show me one single benefit I've gotten from having ME. I get NO government supported healthcare. I get NO services of any kind -- shoppers, caregivers, helpers. I get NO disability payments. I get nothing. Instead of working as a professional with a six-figure salary, I'm stuck working at home part-time as a tutor to keep a roof over my head. I can no longer socialize, so I'm not even getting sympathy from friends. Where is the benefit here?

    And yet I still have ME. I wonder how this crackpot explains that?

    The self-righteous prejudice behind this thinking is shocking and disgusting. It's the kind of thing Trump would say if he was aware of us... which, thank goodness, he appears not to be.
     
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  17. Woolie

    Woolie Senior Member

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    In all psychogenic/biopsychosocial writing, there seems to be an obligatory line about how much these patients are costing. I think the advocates of this stuff are desperate to get more attention from the medical profession, and use the economic angle as part of their marketing strategy.

    Its common to see statements about how costly MUPS or whatever are (resources, consulting time, benefits); its much rarer to see statements about how much suffering the patients endure. You can draw your own conclusions about that.
     
    Last edited: Dec 8, 2015
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  18. user9876

    user9876 Senior Member

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    GPs are constantly moaning about the 'worried well' who fill up their waiting rooms and they probably associate MUPs with that. Of course if it didn't take 10 visits to get a GP to do the most basic things then they would have to deal with less appointments,
     
  19. Woolie

    Woolie Senior Member

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    @user9876, I agree. It makes total sense that illnesses we don't understand will take up more time than those that are readily diagnosed and easy to treat. Patients with "unexplained" illnesses are getting no treatment, no plausible explanation for what's wrong with them, so they keep looking for some kind of answer. Rather than find new ways to get rid of them, maybe we should be highlighting the importance of understanding what's at the bottom of these illnesses? That would save more time in the long run.
     
  20. user9876

    user9876 Senior Member

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    With GPs in the UK its not just illnesses we don't understand its ones that they should be diagnosing but are ignoring.
     
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