1. The 'News In Brief' post for w/c 8th October is now available Guest, click here.
    Dismiss Notice

David Tuller - Trial By Error: The Australian Situation

Discussion in 'General ME/CFS News' started by Cheshire, Mar 15, 2018.

  1. Cheshire

    Cheshire Senior Member (Voting Rights)

    Messages:
    703
    Likes Received:
    7,671
    This thread focuses the information about the Australian situation in David Tuller's recent blog.

    It has been split from this thread which focuses on the news about Esther Crawley in David Tuller's recent blog.


    http://www.virology.ws/2018/03/14/t...ituation-and-professor-crawleys-new-position/
     
    Last edited by a moderator: Mar 16, 2018
  2. AndyPandy

    AndyPandy Senior Member (Voting Rights)

    Messages:
    192
    Likes Received:
    2,034
    Location:
    Australia
    There was also a great Q and A with Penelope McMillan about the plight of ME sufferers in Australia.

    I will try and post a link.
     
    Invisible Woman, Jan, Barry and 8 others like this.
  3. Cheshire

    Cheshire Senior Member (Voting Rights)

    Messages:
    703
    Likes Received:
    7,671
    Sorry I added the link... (seems like I keep forgetting links these days:confused:)
     
    Last edited: Mar 15, 2018
    Invisible Woman, Jan, MeSci and 4 others like this.
  4. AndyPandy

    AndyPandy Senior Member (Voting Rights)

    Messages:
    192
    Likes Received:
    2,034
    Location:
    Australia
    I hope that the content of this Q and A is brought to the attention of mainstream media in Australia.
     
    Invisible Woman, Hutan, Jan and 9 others like this.
  5. AndyPandy

    AndyPandy Senior Member (Voting Rights)

    Messages:
    192
    Likes Received:
    2,034
    Location:
    Australia
    Sean, dangermouse, MeSci and 5 others like this.
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    1,833
    Likes Received:
    15,136
    Invisible Woman, Sean, Jan and 8 others like this.
  7. AndyPandy

    AndyPandy Senior Member (Voting Rights)

    Messages:
    192
    Likes Received:
    2,034
    Location:
    Australia
    Just to clarify:

    There are now two separate Q and As referred to above.

    1. David Tuller and Penelope McMillan in David Tuller's blog

    2. Emerge and David Tuller in the series of videos from the public meeting in Melbourne on 16 March 2018.

    Thanks to @Sly Saint for posting the videos.

    Both of these Q and As are worth looking at if you want to inform yourself about the situation in Australia.
     
  8. Hutan

    Hutan Moderator Staff Member

    Messages:
    2,342
    Likes Received:
    10,185
    Thank you @AndyPandy. :thumbsup: I was just trying to work out how to say what you have said so clearly.

    The written Q and A in David Tuller's blog is a good summary of the situation in Australia and should be useful for journalists wanting background.
     
    Invisible Woman, Allele, Sean and 3 others like this.
  9. Flying Dutchman

    Flying Dutchman Established Member

    Messages:
    17
    Likes Received:
    92
    The following is from the first Q&A - part of a reply by Penelope McMillan:

    "PACE has had a significant influence in Australia, through PACE materials included in the Royal Australian College of GPs’ website. Approaches by patients and GPs to have the materials removed from the website have been unsuccessful to date. The CBT/GET requirement pervades Centrelink, the NDIS, the insurance industry, and many GPs’ approaches. PACE is also a major part of the Cochrane reviews for CFS. The Commonwealth Medical Officer confirmed that federal government policy is based on the Cochrane reviews."

    ...

    Can anybody help identify documentary evidence supporting these assertions?

    I've found this clinical practice guideline on the RACGP's website, endorsing GET:
    https://www.racgp.org.au/your-pract...xercise-therapy-for-chronic-fatigue-syndrome/

    The RACGP's website also links to pro-PACE articles in its journal, Australian Family Physician (AFP) but, in fairness, not all AFP articles on ME are pro-PACE.

    Has Centrelink or NDIS published anything about requiring CBT/GET?

    Has the CMO confirmed the federal government's adherence to Cochrane in public?
     
    Last edited: Mar 22, 2018
  10. sea

    sea Senior Member (Voting Rights)

    Messages:
    356
    Likes Received:
    2,521
    Location:
    NSW, Australia
    They have not published anything but numerous patients have received rejection letters for:
    - dsp by Centrelink on the basis of not being fully treated because they haven’t done GET
    - NDIS on the basis that ME/CFS is not a permanent condition because GET leads to significant recovery.
     
    Hutan, MeSci, Indigophoton and 3 others like this.
  11. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    2,177
    Likes Received:
    17,916
    Is there documentary evidence of this available? I've seen lots of people reporting it, but it's always ideal to have copies of the documents.
     
  12. dave30th

    dave30th Senior Member (Voting Rights)

    Messages:
    299
    Likes Received:
    5,259
    I am working on this issue...and doing some lobbying. I have a meeting with someone from the agency that administers NDIS tomorrow.
     
    Solstice, Sly Saint, Sean and 16 others like this.
  13. sea

    sea Senior Member (Voting Rights)

    Messages:
    356
    Likes Received:
    2,521
    Location:
    NSW, Australia
    There’s a facebook group dedicated to this issue where patients are compiling their rejection letters
     
    alex3619, Indigophoton, MeSci and 4 others like this.
  14. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    2,177
    Likes Received:
    17,916
    Good idea. Terrible to hear it's necessary.
     
    Indigophoton, MeSci, mango and 3 others like this.

Share This Page