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Video clip of a Australasian conference on MUS, mentions ME.

Discussion in 'PsychoSocial ME/CFS News' started by anniekim, Jun 16, 2019.

  1. anniekim

    anniekim Senior Member (Voting Rights)

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    Moderator note:
    Thread moved from 'General ME/CFS News'.



    It’s interesting to listen to the last 2 minutes of this short 9 minute video, so starting at 7 minutes, where one of the doctors, the Chairman I believe, poses a question as if he is a ME patient. The response illustrates the gaslighting towards pwme.

     
    Last edited by a moderator: Jun 20, 2019
  2. Hutan

    Hutan Moderator Staff Member

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    :banghead:
    It really does feel like whack-a-mole. We people with ME can be working as hard as we can to educate medical professionals, but sessions like that can undo all of those gains.

    I think there needs to be responses to this sent to the RACP, bringing things like the changed CDC advice to their attention. ANZMES needs to be responding.
     
  3. Ravn

    Ravn Senior Member (Voting Rights)

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    Heeeeellllp!!!! That man has swallowed Per Fink's ideas wholesale (towards the beginning of the video). Worse, he's influential.

    Reablement?!

    The last panellist at least had the grace to look stonyfaced.
    All quotes from the RACP Congress website https://racpcongress.com.au/
    RACP = Royal Australasian College of Physicians
     
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  4. Hutan

    Hutan Moderator Staff Member

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    Times like this, I want to build wall to stop all these overseas experts infected with MUS ideas coming into New Zealand while we deal with our own outbreak and generally immunise the medical professions.
     
  5. anniekim

    anniekim Senior Member (Voting Rights)

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  6. Daisybell

    Daisybell Moderator Staff Member

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    ‘I hand this out like candy’ says Chris Kenedi.
    Well - you eat it then.....:banghead:
     
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  7. Ravn

    Ravn Senior Member (Voting Rights)

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    @Marylib
    My first thought was how can we get him deported. Not that our American members would appreciate having him back I suspect. But in the States his point of view would at least be somewhat diluted by all the other, good stuff going on. In a small country like NZ just one or two people like him can have disproportionate influence and do a lot of damage.

    @RoseE

    @anniekim Can you change the title to indicate it was an Australasian congress - to alert the Australians here?
     
    Last edited: Jun 17, 2019
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  8. anniekim

    anniekim Senior Member (Voting Rights)

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    Done :)
     
  9. Hutan

    Hutan Moderator Staff Member

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    When I first saw the post above, the request to change the title was hidden in the quote box. And so for a brief, glorious, highly improbable moment I thought you were claiming to have succeeded in getting him deported.
     
  10. anniekim

    anniekim Senior Member (Voting Rights)

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    407B4AB7-2CEE-407F-AAF5-C2E2E91298F0.jpeg And the treatment of course is - CBT and GET
     
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  11. anniekim

    anniekim Senior Member (Voting Rights)

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    Ha ha, afraid not!
     
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  12. Ravn

    Ravn Senior Member (Voting Rights)

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    Been trying to figure out what the best response would be.

    There's probably not much we can do about it now. The conference is over and the attendees of the talk have gone home and either taken those psychosomatic ideas with them or, with luck, have forgotten them already because they weren't really listening in the first place because they only attended the conference for the social programme... I'm kind of hoping only people already infected with the MUS virus attended the talk and Kenedi was only preaching to the converted, which is bad enough but not as bad as spreading the virus.

    Anybody feel up to commenting on Youtube (and dealing with all the potentially unpleasant backlash)?

    It looks like this year's session on MUS was a follow-up to last year's session on the same topic. So maybe we need to keep a proactive lookout for next year's programme? Though what we could do to put our case more effectively then I haven't the first idea.
    https://racpcongress.com.au/timetable/tuesday-7-may-2019/
     
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  13. Andy

    Andy Committee Member & Outreach

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    Comments are disabled on it, unfortunately. It's still possible to down, or up, vote it though.
     
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  14. Andy

    Andy Committee Member & Outreach

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  15. Hutan

    Hutan Moderator Staff Member

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  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    The whole discussion reeks of self-satisfied pseudoscience. However, I do have some sympathy for the questioner in relation to ME/CFS - but only some.

    He talks of patients bringing research studies and claiming that they show a real pathology. The truth is that as yet we have no studies that convincing show a pathology. The vast majority of studies show that such and such a pathology is not present. Where there is. study that suggests there might be there are almost always other studies that disagree.

    So I can see that it is frustrating for doctors to be constantly told about weak studies. But the response is not to say we have no evidence for pathology. The evidence for pathology is in the clinical presentation itself. PWME are disabled and their story does not fit with it all being about false beliefs. Moreover, PACE shows that trying to counter false beliefs does not affect disability.

    So there is a pathology we have not found yet, but the research studies are not so far helping - precisely because they have not found it.

    I would discourage patients from using research studies to argue with doctors. I think charities make a mistake when they hype these studies. Mentioning research studies simply reinforces the false beliefs of these psychotherapy people that ME is all about false beliefs.
     
  17. Obermann

    Obermann Established Member (Voting Rights)

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    Good point! I think it is a problem that many studies are hyped and that many advocates claim that some selected studies provide definite proof that ME/CFS is a somatic illness. However, I do think that pilot studies and reported abnormalities on a group level have some significance, even if we don’t understand how they are connected or the underlying causal mechanisms. If they were of no scientific value at all, we wouldn’t be making these studies. They give supportive evidence to patient testimonies that multiple systems in the body are affected and provide hints for future research.
     
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  18. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    My sympathy disappears when I discovered that most GPs don't bother regularly reading any peer reviewed research at all. I have asked doctors in many different social contexts and they all give the same answer - only doctors who do research, subsequently read research regularly.

    These GPs should in principle be agnostic because they do not read any relevant literature. The fact that many have already made up their mind is a big worry. Patients bringing in literature should be a wake-up call that they need to do more research - and if the research is inconclusive, it is a wake-up call to demand more research be done, so that the condition can be explained.
     
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  19. strategist

    strategist Senior Member (Voting Rights)

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    There are many studies showing abnormalities. Some of these abnormalities seem to be real. Are these not a hint that there is a pathology and that patients aren't imagining things?

    Ironically, patients are probably keen to cite these studies because they are trying to counter the idea of false illness beliefs. Not necessarily because they read about the cognitive behavioural model but because they are correctly sensing that they're not being believed.
     
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  20. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12136294

    https://www.nzherald.co.nz/index.cfm?objectid=12173126

    "Managing Difficult Encounters Chris Kenedi M.D."
    http://www.gpcme.co.nz/pdf/2016 North/Thur_Room7_0830 Difficult pt and the brainGP CME 2016.pdf
     
    Last edited: Jun 17, 2019
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