Oslo Chronic Fatigue Network

Discussion in 'Psychosomatic news - ME/CFS and Long Covid' started by Sly Saint, Sep 8, 2024.

  1. MittEremltage

    MittEremltage Senior Member (Voting Rights)

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    I defenetly agree!
     
    Anna H, Kalliope, mango and 1 other person like this.
  2. MittEremltage

    MittEremltage Senior Member (Voting Rights)

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    Location:
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  3. MittEremltage

    MittEremltage Senior Member (Voting Rights)

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    The past few weeks following the Stockholm region's meeting regarding care for ME patients have been turbulent.

    I have had significant difficulties obtaining documents related to the meeting. The region claims, for example, that no minutes were taken.
    Link to blog:
    https://mitteremitage-wordpress-com...l=auto&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

    I have also tried to learn more about the collaboration with the health center where Lindsäter works. I have attempted to obtain a contract and decision regarding the additional assignment they claim to have. However, it turns out that there is no contract.
    Link to blog:
    https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

    After being passed around the region for several weeks, I was suddenly contacted by the manager of the health center again. She informs me that they have declined the assignment.
    Link to blog:
    https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp
     
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  4. Utsikt

    Utsikt Senior Member (Voting Rights)

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    So the BPS lobby preemptively claimed that they had gotten a formal assignment with regards to ME/CFS, but all they had was a proposal from themselves? And they ended up pulling out of it on their own?

    I’m not up to speed on the roles, so I might have gotten things wrong?
     
    Anna H, Sean, Trish and 1 other person like this.
  5. MittEremltage

    MittEremltage Senior Member (Voting Rights)

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    About that. But I don't know what happened behind the scenes before the operations manager emailed and said that she was withdrawing the additional assignment. Whether it was voluntary or not. I have more questions now than when I started looking for information two weeks ago.
     
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  6. mango

    mango Senior Member (Voting Rights)

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    MittEremltage, Anna H, Trish and 2 others like this.
  7. MittEremltage

    MittEremltage Senior Member (Voting Rights)

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  8. mango

    mango Senior Member (Voting Rights)

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  9. MittEremltage

    MittEremltage Senior Member (Voting Rights)

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    bobbler, Nightsong, mango and 6 others like this.
  10. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Nightsong, mango, rvallee and 5 others like this.
  11. Trish

    Trish Moderator Staff Member

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    You are doing a brilliant job of documenting all this, @MittEremltage.

    Perhaps I should stop being shocked by the unscientific and harmful actions of this group. It is after all just a continuation of 35 years gaslighting sick people. It's very distressing to hear it's still going on, and affecting people in Sweden and elsewhere.
     
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  12. MittEremltage

    MittEremltage Senior Member (Voting Rights)

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    Thank you @Trish (and @Peter Trewhitt )! I feel the same way, that I shouldn't be shocked, but I still am. And above all, I am so frustrated that there is no public discussion about this beyond what I write and publish. The media acts as megaphones without any fact-checking. Consortium members are doing things in the name of Karolinska Institute, Stockholm University, and Region Stockholm, and people believe it.

    I am doing what I can to document what is happening, thinking that at least there will be a record for when people wake up and try to understand what has happened."
     
  13. Midnattsol

    Midnattsol Moderator Staff Member

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    Eight members of this group met with the Norwegian Directorate of Health to talk about ME in february, as found out by and FOI request by a Norwegian patient advocate, more can be read here (in Norwegian).

    I'm just translating what Sissel shared as the main points of their presentation, I haven't been up to reading through it myself yet:
    • The Guidelines should not create artificial separation between patient groups without scientific backing (for example PEM vs non-PEM)
    • CBT and GET are well documented, safe and effective for this patient group and this should be made clear in the guidelines
    • A singular biomedical focus can be dangerous
     
  14. Utsikt

    Utsikt Senior Member (Voting Rights)

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    A singular pseudoscientific focus can be dangerous.
     
  15. rvallee

    rvallee Senior Member (Voting Rights)

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    Their entire ideology is built on this. But of course we know that any requirement they want to apply will only apply in their favor.
     

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