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NZ Listener - Ills thought out - Wilson 2019

Discussion in 'General Advocacy Discussions' started by Hutan, May 7, 2019.

  1. Carolyn Wilshire

    Carolyn Wilshire Established Member (Voting Rights)

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    I think that's an excellent idea, @Hutan. I might talk to our press office about whether they're interested (I think the answer will be yes!).

    Actually, I have just written a piece for the MEA newsletter, which should come out some time this week. It tells a little of the back story behind the PACE reanalysis. Makes for great story telling!
     
  2. Hutan

    Hutan Moderator Staff Member

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    :)
     
  3. Trish

    Trish Moderator Staff Member

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    Thank you for all you are doing.

    Not everyone here will have access to the MEA newsletter. Will they be publishing it on their website too?
     
  4. Amw66

    Amw66 Senior Member (Voting Rights)

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    Renamed as .... Schroedinger' s Disease ...
    Eta

    Or is this a manifestation of a double bind situation ?
     
  5. BruceInOz

    BruceInOz Senior Member (Voting Rights)

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    Fits perfectly. As soon as an observation is made, the cat is clearly either dead or alive, not both. But here, the author suffers from having never actually observed people with ME so, from their perspective, they can simultaneously be in either state.
     
  6. Carolyn Wilshire

    Carolyn Wilshire Established Member (Voting Rights)

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    Yes, they will! So I expect I'll hear about it here at S4ME before I hear about it from them!
     
    Trish, Ravn, Andy and 1 other person like this.
  7. Ravn

    Ravn Senior Member (Voting Rights)

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    Ah, so that's how we can be both disabled and recovered simultaneously... thank you for clearing up that mystery.
     
    Chezboo, Lisa108, rvallee and 6 others like this.
  8. RoseE

    RoseE Senior Member (Voting Rights)

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    I understand that some letters to the editor, in response to this 'Ills thought out' article, were printed in this week's listener (my mum, who is in another city told me :) ). Anyone seen them yet? Do they help to balance back to truth?
     
    Andy, Hutan and ukxmrv like this.
  9. Ravn

    Ravn Senior Member (Voting Rights)

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    Only the two letters from our members (see posts #2 & #7) were published. I didn't check if they were printed in full but I think so.

    There's also a reply from Wilson to @Carolyn Wilshire's letter (attached). It's a bit garbled (Wilson's reply, not Carolyn's letter) and makes one wonder if he somehow managed to not read his own column. In his reply he denies having made any causative claims, yet in his column he had written this:
    Listener letter reply (2).jpg
     
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  10. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    I guess that's a job left to journalists. (I'm quite jaded when it comes to reporting of science...)

    Marc Wilson has failed to note that how you think might not necssarily effect disease outcomes, but merely how patient reported outcomes on questionnaires. Likewise, how patients think affects whether they are likely to participate in a study run by a psychology department. Or at the very least this is a major bias of such studies.

    Caroline Wilshire suggests "chance variation" could explain the differences between the findings of the Moss-Morris study and others, but other forms of bias could also explain the differences.
     
    Last edited: May 13, 2019
  11. rvallee

    rvallee Senior Member (Voting Rights)

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    It's been pretty well-established that outlook and attitude have no impact on disease outcome besides maybe a small measure of quality of life. It's been cherry-picked to death for a positive outcome-seeking and it's all garbage. Horrible petulant people die of cancer just the same as happy, worry-free selfless people. At this point it's malpractice to continue promoting this patient-blaming argle-bargle. People don't lose a fight to disease anymore than someone who falls to their death lost a fight with gravity.
     
  12. Ravn

    Ravn Senior Member (Voting Rights)

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    After chasing them up for a reply to my letter I eventually got this:
    Couldn't help myself so I replied again to point out that Marc's response failed to address the key criticism - his column suggesting a causal link between 'dysfunctional' thoughts and the development of ME/CFS - and instead defended his view that one's emotional reaction to chronic illness could affect quality of life, a view nobody had disagreed with in the first place.

    I doubt I'll get a response this time and suspect any future emails from me to the NZ Listener will go straight to their spam folder. Ah well, can only but try...
     
  13. Ravn

    Ravn Senior Member (Voting Rights)

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    There's another letter to the editor in the new Listener (May 25-31). The end of the last sentence didn't make it into the picture, it finishes with "all who work in the field".
    listener letter2.2.jpg
     
  14. Ravn

    Ravn Senior Member (Voting Rights)

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    MEMarge, Andy, Hutan and 3 others like this.
  15. Hutan

    Hutan Moderator Staff Member

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    The ANZMES letter:

    It's good that ANZMES responded, although they are still suggesting that a biomarker is 'near at hand'. I'd prefer it if they toned down the certainty, but we don't seem to be able to get through to them on that. Of course, one day, they will be right.

    I'd also prefer it if they didn't push the 'ME/CFS has been proven to be physical' line. It's easy for the BPS crowd to suggest that our faulty thinking has caused inflammation or deconditioning or something else that's physical. I think the most helpful argument is that there is no evidence that treatments designed to change the way we think or behave cure the illness.

    Does anyone have a copy of the new guidelines for GPs that ANZMES mentions? :nailbiting:
     
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