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SBS Australia documentary on ME

Discussion in 'General ME/CFS News' started by AndyPandy, Mar 13, 2018.

  1. AndyPandy

    AndyPandy Senior Member (Voting Rights)

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    Emerge has just posted this on FB.

    "SBS is looking for people to go on camera who are severely affected with ME/CFS and have had difficulties with the NDIS. The Feed, a daily news and current affairs program on SBS Viceland, is making a 10-15 documentary about the latest research around ME/CFS and will feature stories of people with ME/CFS who have faced challenges getting the support they need, particularly in relation to accessing the NDIS. Please contact us if you'd like to be on camera."

    This is an important opportunity to be heard in Australia. Please contact Emerge if you are interested in participating.
     
  2. Sean

    Sean Senior Member (Voting Rights)

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    Haven't applied for the NDIS, and not intending to given the failure rate of applicants, the less than adequate deals they seem to be getting, and how stressful the process if proving.

    Not to mention that ME/CFS seem to be getting a particularly raw deal, entirely due to the policy advice from the PACE/BPS cultists.

    Going to wait until we change governments, and see if that is any better. Should be, but we will see.
     
    Last edited: Mar 13, 2018
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  3. AndyPandy

    AndyPandy Senior Member (Voting Rights)

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    There are a lot of comments on Emerge's FB post.

    I think it's worth posting a comment so that Emerge gets a feel for just how bad things are for ME sufferers in Australia.

    Although the original post was about the problems with accessing the NDIS, commentators aren't limiting themselves to that topic.
     
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  4. Daisymay

    Daisymay Senior Member (Voting Rights)

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    Could they include an interview with Dave Tuller who is in Australia now?
     
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  5. Sean

    Sean Senior Member (Voting Rights)

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    Emerge FB link?
     
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  6. AndyPandy

    AndyPandy Senior Member (Voting Rights)

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  7. Amw66

    Amw66 Senior Member (Voting Rights)

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    I hope Tania on PR takes advantage of this.
     
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  8. AndyPandy

    AndyPandy Senior Member (Voting Rights)

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    I've tried to contact her privately about it. I'm not sure how she is at the moment.
     
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  9. AndyPandy

    AndyPandy Senior Member (Voting Rights)

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    Hi @Daisymay

    It looks like Emerge will be streaming a live session with David Tuller on FB at 2.30pm Melbourne time Friday 16 March.

    Link to Emerge's FB is in a previous post.
     
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  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  11. AndyPandy

    AndyPandy Senior Member (Voting Rights)

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    SBS is screening the documentary about ME and the NDIS tonight at 7.30pm on SBS Viceland - The Feed.
     
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  12. BruceInOz

    BruceInOz Senior Member (Voting Rights)

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    Thanks for that. I would have missed it. Set to record.
     
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  13. Simone

    Simone Senior Member (Voting Rights)

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    Here’s a preview of the story, which the journalist (Simon Cunich) posted to his Facebook page.




    For some context, the guy who talks about pwME/CFS experiencing prejudices, is the President of the Royal Australian College of General Practitioners (RACGP), Dr Bastien Seidel. Dr Seidel has given supportive interviews before: http://www.abc.net.au/triplej/programs/hack/what-its-like-living-with-chronic-fatigue/9046886

    However, RACGP continues to recommend GET (and draws on the PACE trial manual) on its website, and refuses to engage with the ME/CFS community to have this revised (though we continue to try to engage).
    https://www.racgp.org.au/your-pract...xercise-therapy-for-chronic-fatigue-syndrome/
     
    Last edited: Apr 4, 2018
  14. Andy

    Andy Senior Member (Voting Rights)

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  15. AndyPandy

    AndyPandy Senior Member (Voting Rights)

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    Thanks to all who contributed.

    Bless you @dave30th for fighting for ME sufferers in Australia.
     
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  16. Andy

    Andy Senior Member (Voting Rights)

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    At the same time both a honest appraisal of how much his work means to so many of us but also a heavy burden to take onto yourself. Never forget David you have saved lives - any responsibility for any deaths needs to go to those who have historically acted against our best interests, not you.
     
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  17. Simone

    Simone Senior Member (Voting Rights)

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    If watched the story and thought it was good, it would be great if you would head to The Feed’s Facebook page (if you’re on Facebook) and leave a comment on their post:
    https://www.facebook.com/thefeedsbsviceland/
     
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  18. Andy

    Andy Senior Member (Voting Rights)

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    Code:
    https://www.facebook.com/thefeedsbsviceland/videos/599581853708858/
    Direct link to copy and paste.
     
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  19. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  20. Art Vandelay

    Art Vandelay Established Member (Voting Rights)

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    I agree. David, you are amazing.
     
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