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Parliament of Australia - petitions and questions

Discussion in 'General ME/CFS News' started by Sly Saint, Apr 5, 2019.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Parliament of Australia

    from the Minister for Families and Social Services, Mr Fletcher

    https://parlinfo.aph.gov.au/parlInf...dr/84457b57-5639-432a-b4df-68b704cb3563/0032"
     
    MEMarge, Esther12, MyalgicE and 6 others like this.
  2. pteropus

    pteropus Senior Member (Voting Rights)

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    the existing "Australian (medical) Guidelines" mentioned are still based on the GET/CBT/hysteria model.

    it will probably take some time and a lot of effort, for the NHMRC report to be finalised, for the existing medical guidelines (GET/CBT/hysteria model) to be updated with actual science, and for the NDIA to get their heads around the actual science (eg that recovery from post-viral fatigue in first 6 months is high, but it's not the same beastie as ME/cfs (CCC/ICC) which is usually permanent)

    the clever people at Emerge Australia, and many many other advocates, are already achieving miracles - i believe we WILL get better support.

    hopefully, the end result will be List B, similar to Multiple Sclerosis.

    [edited to remove comments about NDIA 'permanent disability' requirement - please refer to comment below from Simone]
     
    Last edited: Apr 6, 2019
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  3. rvallee

    rvallee Senior Member (Voting Rights)

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    Well that's just a blatant lie. Most of the research shows remission, not recovery, rates of 5%.

    Controversial opinion here but lying about disease prognostic is way over there on the unethical side of things and possibly illegal. Governments are supposed to make decisions based on reality, not the personal gut feeling of a few people who have managed to worm their way into influence.
     
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  4. Simone

    Simone Senior Member (Voting Rights)

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    A previous letter which was being sent out demonstrated a clear misunderstanding about recovery and diagnosis. It said, “One Australian study followed 253 patients diagnosed with chronic fatigue, and found that only approximately 11 per cent continued to meet diagnostic criteria at six months”.

    Of course, we know this makes no sense, because you have to have been sick for six months to meet the criteria at all. What they’d done was misinterpreted the Dubbo study results, which found that, at six months, 11% of people had failed to recover from an initial infection and had met the criteria for ME/CFS. The study said nothing about recovery from ME/CFS, just how many people developed ME/CFS post-infection.

    Emerge Australia has explained their mistake to them, though I’m not sure the message has gotten through.

    The bigger issue with NDIA is permanency, and how to prove it.

    There is a quote from the Australian 2002 guidelines (as much as we hate them), which some are using with their NDIS applications. There are many who this won’t help, which is also problematic, because we don’t want NDIA to develop procedures which are going to exclude people with ME/CFS who are functionally impaired and in need of support.
    “In people who have been severely disabled and unable to work for more than five years, the probability of substantial improvement within 10 years is less than 10%–20%. This may be regarded as “permanent disability” for medicolegal purposes.” (p. S47)
     
  5. BruceInOz

    BruceInOz Senior Member (Voting Rights)

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    It sounds like whoever drafted the minister's reply had been exposed to the false interpretation of the Dubbo study and stated it as fact.
     
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  6. MyalgicE

    MyalgicE Senior Member (Voting Rights)

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    The Minister’s response was predictable and reasonable, of course a government department will follow government guidelines.

    Here’s more on Emerge and ME Australia’s recent meeting (which I participated in) with the NDIA where permanency was discussed:
    https://meaustralia.net/2019/03/30/disability-agency-consults-on-me-and-cfs/

    More recent government reports, such as the 2016 Parliamentary chronic illness report used figures from Emerge stating “around 25 per cent [are] so profoundly affected by the condition they don’t recover”.
    https://www.aph.gov.au/Parliamentary_Business/Committees/House/Health/Chronic_Disease/Report

    And, while it is yet to be delivered to government, the draft advisory committee report says 99% recovery rate:
    https://meaustralia.net/2019/03/25/...recover-from-chronic-fatigue-syndrome-and-me/

    Here’s how bad the Australian guidelines really are:
    https://meaustralia.net/2018/11/30/...n-chronic-fatigue-syndrome-guidelines-and-me/
     
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  7. MyalgicE

    MyalgicE Senior Member (Voting Rights)

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    No, the International Criteria for ME doesn’t specify 6 months before meeting the criteria. It’s referred to as the acute phase.
    I was diagnosed with ME after 4 months, for example.
     
  8. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Yes, it is clear they are ignorant about the reality for most patients. CFS is not merely post-viral-fatigue...
     
  9. Esther12

    Esther12 Senior Member (Voting Rights)

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    That is kind of amazing.
     
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  10. Simone

    Simone Senior Member (Voting Rights)

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    It does.
     
  11. Simone

    Simone Senior Member (Voting Rights)

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    True, but I was referring to the Dubbo studies, which used Fukuda and which they’d misinterpreted.
     
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  12. MyalgicE

    MyalgicE Senior Member (Voting Rights)

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    How could the committee’s report misinterpret the Dubbo study when a Dubbo study author is on the committee?

    I don’t think they are talking Fukuda CFS, as it’s the same language used in the Australian CFS Criteria.
     
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  13. Simone

    Simone Senior Member (Voting Rights)

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    This isn’t about the NHMRC committee’s report. It’s about Minister Fletcher’s response to Emerge Australia’s petition. The previous Minister, Dan Tehan, was sending out letters to people which included a misinterpretation of the Dubbo studies.
     
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  14. Simone

    Simone Senior Member (Voting Rights)

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    Emerge Australia’s response to Minister Fletcher.

    EA8CB9F4-57CF-47F0-92E8-8C6B8CB8187C.jpeg 81D7BF58-438E-4604-AE89-4880C06BC875.jpeg
     

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