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Trial By Error: COPE to BMJ Open: More Details, Please!

Discussion in 'General ME/CFS news' started by Kalliope, Jan 3, 2018.

  1. Daisymay

    Daisymay Senior Member (Voting Rights)

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    682
    Very true, and the same can be said for the Lancet and PACE.
     
    Stuart, ladycatlover, Lidia and 12 others like this.
  2. Barry

    Barry Senior Member (Voting Rights)

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    8,385
    It's as if certain people have certain people by the short and curlies.
     
    ladycatlover, MEMarge, Allele and 8 others like this.
  3. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    1,678
    I think it's more a case of a lot of people not wanting to admit that their first instincts were bigotry and laziness.

    The only thing worse for them than the fact that they are bigoted and lazy is other people now finding out that they were bigoted and lazy.

    They don't think they can be bigoted and lazy, because they think they are 'nice' people.

    They think they cannot be manipulated because they are clever.

    Their first defence was the 'you're the real bigots' strategy.

    The denials will begin with the 'I have a friend with chronic illness' defences.
     
  4. Wonko

    Wonko Senior Member (Voting Rights)

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    6,684
    Location:
    UK
    Isn't everyone's first instinct to be bigoted and lazy? ...and then the rational brain is supposed to kick in and suppress such instincts as is appropriate. Both bigotry and laziness have survival value, so they're kinda built in, but we have a consciousness precisely to evaluate if in a given situations this is appropriate, and modify our thinking and behaviour accordingly.

    Sci-fi films would be a lot less profitable if our instinctive reactions to the strange and unusual was to hug it and give it a warm cocoa.
     
  5. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    1,678
    I bet you could get them to agree that they sometimes have bigoted and lazy thoughts, but they would deny it going any further than thoughts into actions.

    To any aliens reading, the hugs thread is open to all :p
     
  6. Andy

    Andy Committee Member

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    21,956
    Location:
    Hampshire, UK
    "Thanks", :emoji_alien:
     
  7. Alvin

    Alvin Senior Member (Voting Rights)

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    3,309
    Hugs are irrelevant, resistance is futile :borg:
    (Who knew the Borg smilie would come in handy)
     
  8. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    1,678
    *Hugs borg while holding powerful electromagnet.*
    :d
     
  9. Valentijn

    Valentijn Guest

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    Location:
    Netherlands
    I think it's more a case of having an extensive network of associations and contacts with all of the relevant institutions. Eg, Wessely was a founding member of the Cochrane mental health group which does their CFS reviews. He and others have been editors or reviewers for most of the relevant journals. Dozens of co-authors were listed for PACE publications, which probably included staff at most British universities.

    Basically they've got an inside man or two almost everywhere that they need one. Wessely is a piss-poor researcher, but he's a brilliant networker, and that's what kept real research and patients repressed for decades. Crawley seems to be trying to emulate him somewhat, but can't stop saying and doing stupid things, so even her supporters have to distance themselves.

    We seem to be winning the ME/CFS fight, but now there's a completely different MUS/MUPS war to fight. @Jonathan Edwards mentioned in another thread that the different factions are a threat to those psychosomatic CFS researchers, but the prominence of the MUS movement is a strong indication that the "splitters" lost and the "lumpers" won that internal struggle. Though the current investment in the MUS approach is probably at least partially due to losing too much ground in their fight to control ME/CFS and other specific diagnoses, so may itself be a preliminary sign of defeat.
     
    Solstice, ladycatlover, inox and 17 others like this.
  10. Allele

    Allele Senior Member (Voting Rights)

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    1,047
    A bit OT here, but isn't the most obvious and elegant answer to Medically Unexplained Symptoms to engage in a whole lot more medical research to explain them? How did we land in a spot where it is presumed that all avenues have been exhausted and thus absence of evidence is equivalent to evidence of absence?

    This seems so incredibly lazy and irresponsible, not to mention entirely unscientific.

    ETA I know we have all said this ad nauseam, but it does bear repeating ad nauseam!
     
  11. Wonko

    Wonko Senior Member (Voting Rights)

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    6,684
    Location:
    UK
    This is what apparently happens during the fall of empires and/or civilisations - or so it is written (by someone who's dead so it must be true.)
     
    Solstice, ladycatlover, Barry and 8 others like this.
  12. Valentijn

    Valentijn Guest

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    Location:
    Netherlands
    MUS aren't a problem to be solved. They're the solution to the problem of how to spend less money on medical care.

    Yes, MUS is a financial and political construct, not a medical or scientific concept.
     
  13. Adrian

    Adrian Administrator Staff Member

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    Location:
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    But could we take advantage of it and use the term by turning it around and using it as an admission of medical ignorance.
     
    Solstice, ladycatlover, Barry and 8 others like this.
  14. Allele

    Allele Senior Member (Voting Rights)

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    Pushback has to come from somewhere. It's not coming from the politicized medical-indstrial complex.
    Blowing open the sham of psych "science" needs to happen.

    I do think there is a place for certain psych ideas/applications, but they are much, much narrower than the current blanket applications, and they are largely beneficial in a realm limited to symptom management, and lifestyle management, not curative.

    Here in the US there is a law that allows the state to detain you if you are deemed to be a harm to yourself or others, and you lose all sovereignty the moment this determination is made by their own, not your, agents.

    FB is now about to implement AI to trawl posts for "signs" of suicidal ideation, leading to a "wellness check".

    We have long passed the point where action needs urgently be taken.
     
    Solstice, ladycatlover, Barry and 4 others like this.
  15. Trish

    Trish Moderator Staff Member

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    Location:
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    I think a large part of the MUS problem is that it's been put in the hands of OT's and psychologists who have no clue about the possibility of there being a biomedical explanation for any of the conditions they 'treat' under the MUS umbrella. They live in a world where words like mitochondria, metabolomics, cytokines, 2 day CPET tests etc don't even exist.

    So they are free to go on making up fantasy 'treatments' based loosely on treatments used for mental health conditions, but with the added layer of patient blame, 'all in the head' nastiness, and an unhealthy dollop of the pernicious 'positive thinking', 'think yourself better' school of bollocks. And they believe they are really helping patients, because they don't understand the basics of scientific research or medicine.

    And they are given free rein to do this because it saves money and gets the difficult to diagnose and treat patients out of the hair of the doctors who should know better.

    Edit: Sorry, got carried away by the mention of MUS. Off topic for this thread. Slap hand!
     
  16. Barry

    Barry Senior Member (Voting Rights)

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    8,385
    I think the real ignorance is with those psychiatrists who jump on the bandwagon. Presuming unexplained symptoms must be of mental origin, rather than biology still waiting to be understood.
     
    Inara, EzzieD, Solstice and 3 others like this.
  17. Barry

    Barry Senior Member (Voting Rights)

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    8,385
    Not that far off topic - sloppy research and all that.
     
    Inara, Solstice, ladycatlover and 3 others like this.

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