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News from New Zealand and the Pacific Islands

Discussion in 'General ME/CFS News' started by Hutan, May 19, 2018.

  1. Hutan

    Hutan Moderator Staff Member

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    It's great to have a representative of Anzmes here @Marylib.

    @TiredSam has explained beautifully why unfounded optimism isn't a good way to support people with a long term problem.

    ANZMES' overly-optimistic approach not only sets people with ME/CFS up for raised expectations and dashed hopes and, ultimately, despair. It also makes people complacent- if ME/CFS is going to be solved soon, there's less need to campaign for research, or for a better understanding of the illness by doctors and government, or for better care.

    Professor Warren Tate recently shared the following: (words in square brackets are mine)
    @Marylib, I wrote to Anzmes about this issue, expressing concern about the overly optimistic letter template that you were circulating for people to sign and send to MPs. I didn't get a reply.
     
    Simbindi, mango, Chezboo and 12 others like this.
  2. theJOYdecision

    theJOYdecision Senior Member (Voting Rights)

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    @Ravn thanks for the link. Just completed my submission. Since system-wide changes were particularly sought I focused a lot on more direct accountability at all lvls of the system to the end consumer (as contrasted to the brush off we receive from politicians currently). Better systems for collecting and adapting in response to consumer feedback. Better communication to consumers about available services and better accessibility of those services. Also slipped in special consideration for rural folk. And slipped in special consideration of those with hidden, under-researched and difficult-to-treat illnesses using ME as an example... stating that our experiences are a good measure of the effectiveness of the system as a whole.
     
  3. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Sticking my nose in here but I had a look at the ANMES site info under what is ME. In my opinion it isn’t frank enough about prognosis. It is possible to give out a more realistic message as shown by ME Association content on this issue. https://www.meassociation.org.uk/about-what-is-mecfs/prognosis-and-quality-of-life/#Part 1 People need to understand what they are dealing with. Unfortunately for me I didn’t see the ME Association content for a couple of years after diagnosis I was going on tha Action for ME info that implies improvement is normal. As a result I was trying to get back to work on a phased return when I would have been better advised to take several months off. I also probably should have put in for ill health retirement at least a year sooner than I did. I’m using my own example to show that lack of frankness however well meaning has direct consequences for people with ME especially the newly diagnosed.

    ETA realised I hadn’t tagged @Marylib
     
    Last edited: May 25, 2019
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  4. RoseE

    RoseE Senior Member (Voting Rights)

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    Hi @Marylib, Thanks for joining us here.

    A positive way forward for ANZMES would be to share any press releases, letters, strategic plans, handouts, etc here for peer review. (Or we could start another more focused thread?)

    The committee would then quickly (within hours & days) get some high quality critique that would help to ensure that evidence-based information is presented well publicly - for the benefit of everyone in NZ with ME, and for their supporters and carers too.

    ANZMES has a big job to do, and it is mainly done by volunteers - so there are real benefits on drawing on the capabilities of the 'crowd' /ME Community.
     
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  5. Ravn

    Ravn Senior Member (Voting Rights)

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    @Marylib The above sounds like an excellent and constructive suggestion to me. We could start a separate thread in the Members only section which would be more specific as well as somewhat more private.
     
  6. ladycatlover

    ladycatlover Moderator Staff Member

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  7. Hutan

    Hutan Moderator Staff Member

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  8. Marylib

    Marylib Established Member (Voting Rights)

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    I completely understand. Fortunately for me, I was advised to stop work after my diagnosis. I am still severely ill much of the time, however. I push myself on a regular basis. Am trying to change my ways. We try to update the website as often as possible. Hopefully soon.
     
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  9. Marylib

    Marylib Established Member (Voting Rights)

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    We may be a bit slow in replying at times. Not intentionally, by any means.

    I agree that Warren is an excellent researcher and advocate for us in NZ. Will have a rest now.

    Plan to rest a good deal in the coming weeks to preserve my own ability to function at all.
     
    Last edited by a moderator: May 29, 2019
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  10. RoseE

    RoseE Senior Member (Voting Rights)

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    A gem of a newsletter from 2002 NZ has surfaced that talked about 23 'MPs for ME' with the aim of promoting awareness and action, and changes to WINZ policy. :thumbup: File attached. A shame that the energy and intention from that time, did not continue.

     

    Attached Files:

  11. RoseE

    RoseE Senior Member (Voting Rights)

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  12. Daisybell

    Daisybell Moderator Staff Member

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    Would be interesting to ask WINZ how much if any of the action promised actually occurred.....
     
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  13. Hutan

    Hutan Moderator Staff Member

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  14. Ravn

    Ravn Senior Member (Voting Rights)

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    Am I the only one who gets the feeling we're all involuntary participants in some sort of weird and never-ending whack-the-mole reality show?

    According to the Otago Daily Times today it's the turn of back pain. BPS (imported from the UK) is to be taught to physiotherapist students at Otago University.

    Now, of course there is a place for psycho-social context. When you're trying to figure out why some people don't do the rigorous physio 'homework' you give them it helps greatly to know that they're working 3 jobs to pay off overdue rent and power accounts plus feed the kids and therefore possibly, just possibly, don't have any energy left for exercises when they finally get home.

    But that's not what the professor interviewed says in this article. Instead he says this:
    https://www.odt.co.nz/news/dunedin/treatment-broadens-approach-back-pain

    Oh my, that sounds awfully familiar... :banghead:
     
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  15. rvallee

    rvallee Senior Member (Voting Rights)

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    This thing has completely veered off deep into woo territory. What's next, chakras and karma? Tarot diagnosing? Wait, no we're already there.

    After decades of warning against alternative medicine, the woo behind much of alternative medicine is now turned into a central component of modern medicine. What an idiotic turn of events, one that fails to account for decades of painfully learned lessons.
     
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  16. Sean

    Sean Senior Member (Voting Rights)

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    It is bizarro stuff. o_O
     
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  17. chrisb

    chrisb Senior Member (Voting Rights)

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    They seem to be discovering that if it Waddells it's probably a quack.
     
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  18. MEMarge

    MEMarge Senior Member (Voting Rights)

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    "Pain is a psychological event"!!!! Not exclusively, and they accuse us of not considering mind and body issues.

    "Pain: An unpleasant sensation that can range from mild, localized discomfort to agony. Pain has both physical and emotional components. The physical part of painresults from nerve stimulation. Pain may be contained to a discrete area, as in an injury, or it can be more diffuse, as in disorders like fibromyalgia.
    Definition of Pain - MedicineNet

    https://www.medicinenet.com/script/main/art.asp?articlekey=4723"
     
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  19. Hutan

    Hutan Moderator Staff Member

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  20. Ravn

    Ravn Senior Member (Voting Rights)

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    For some relief: article written by a GP plus a short video in the Dominion Post/Stuff today, maybe not perfectly perfect but sooooo much better than the RACP stuff:

    https://www.stuff.co.nz/life-style/...fewrecking-result-of-chronic-fatigue-syndrome
     

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