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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. Ravn

    Ravn Senior Member (Voting Rights)

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    Her BP, however, may well have been elevated after the telling off you gave her ;). Good on you for putting it so clearly.
     
    alktipping, MEMarge, ukxmrv and 9 others like this.
  2. RoseE

    RoseE Senior Member (Voting Rights)

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    Thanks for providing such a great response @Daisybell. We should share it widely for others to pull out when needed :)
     
    alktipping, MEMarge, Ravn and 6 others like this.
  3. Trish

    Trish Moderator Staff Member

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    Gold star to Daisybell for having the presence of mind to make such a good response to your doctor. I hope it makes her realise she has been sold a pile of crap, and she won't recommend this to others.
     
    alktipping, MEMarge, Simbindi and 5 others like this.
  4. Daisybell

    Daisybell Moderator Staff Member

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    She still thinks it ‘works for some people’ - but I hope that she will think about the ethics of recommending a ‘therapy’ to patients that tells them they haven’t tried hard enough if it doesn’t work....
     
    alktipping, MEMarge, Simbindi and 8 others like this.
  5. RoseE

    RoseE Senior Member (Voting Rights)

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    Have you seen the draft strategy for Disability?
    You may be aware that the Ministry of Health is touring thru the country in Sep and Oct to hold 'Disability Community Conversations' sessions. The committee of the Canterbury support group registered for the Christchurch sessions being held this Tuesday. (Morning session is for providers, and afternoon session is for pwDisability.)

    Those registered have received the draft strategy, and a list of great questions including....
    • Are we going in the right direction?
    • What is missing?
    The email introduces the session, with
    It would be great to have any feedback from this group that we can feed into the conversation sessions. And if you haven't registered for your local event, it could be worth doing (if it's not too late - 10 days notice on rsvps)...
    https://www.health.govt.nz/our-work...y-projects/disability-community-conversations

    Obviously, part of the conversation is raising how difficult it is for pwME to access any support.

    This is the draft strategy /direction document...
     
    Cohen, Ravn, Hutan and 2 others like this.
  6. RoseE

    RoseE Senior Member (Voting Rights)

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    And have you seen this...
    https://www.systemreview.health.govt.nz/interim-report

     
    Hutan and Ravn like this.
  7. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Possibly of interest

    https://www.researchgate.net/profil...9-Refereed-Conference-Proceedings.pdf#page=17
     
    Woolie, Hutan and RoseE like this.
  8. RoseE

    RoseE Senior Member (Voting Rights)

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  9. Hutan

    Hutan Moderator Staff Member

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    If anyone is thinking of standing for the ANZMES committee, it would be a good idea to get your nomination form and a paragraph about yourself in to them tomorrow.

    While nominations are accepted up until the AGM in November, it sounds as though information about nominated candidates will be sent out to members very shortly.
     
    RoseE, Ravn, rvallee and 3 others like this.
  10. Hutan

    Hutan Moderator Staff Member

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    I've started a Members Only thread for the 2019 ANZMES AGM, where we can post the statements of people standing for the committee and information about how to vote if you can't attend the AGM.
     
    RoseE, Ravn and Subtropical Island like this.
  11. RoseE

    RoseE Senior Member (Voting Rights)

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    I have started a thread to discuss ideas for presenters /sessions for the 2020 RNZCGP /WONCA conference in Auckland, NZ in April 2020.
    Submissions close 31st October 2019.
     
    MyalgicE, rvallee and Hutan like this.
  12. RoseE

    RoseE Senior Member (Voting Rights)

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    M.E. Awareness NZ has received a request to share this information...
    .
    RESEARCH PARTICIPANTS REQUIRED - ONLINE STUDY

    My name is Wendy Wrapson and I am a Senior Research Fellow at Auckland University of Technology (AUT). I am researching how people with a complex medical condition maintain their social connections and social networks. This research is being undertaken with Professor Richard Siegert and Associate Professor Alice Theadom, also of AUT.

    If you have a complex medical condition, would you help us by taking part in an anonymous survey? It will take approximately 20-30 minutes to complete.

    We are defining a ‘complex medical condition’ as one that is persistent and ongoing, substantially impacts your life, and requires treatments and services from a variety of healthcare specialists.

    Criteria (due to funding purposes)
    • Adults aged between 18 and 65 years old who are living in New Zealand.

    The survey is here https://tinyurl.com/y3qyudks

    Thank you! Wendy Wrapson, AUT
     
  13. Daisybell

    Daisybell Moderator Staff Member

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    It’s a shame that probably most of us won’t be able to fill this survey in... it requires you to have seen at least two medical specialists in the last 12 months for your primary illness.

    The email contact is wwrapson@aut.ac.nz in case anyone wants to write to her about this. I’m considering it - if energy allows....
     
  14. Hutan

    Hutan Moderator Staff Member

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    Seems pretty open to bias - those who use forums and facebook are most likely to see the alert to the study.

    Good idea @Daisybell. Those of us who have no specialist to go to or other medical services there to support us probably need social networks within our disease community more than those who do. I might try to send a few sentences too.
     
  15. Hutan

    Hutan Moderator Staff Member

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    From the survey:

    There's an assumption that if your medical condition requires treatments and services, you will receive those treatments and services. There's quite a lot wrong with the assumption, and not just for us.

    For those of us within 5 years of our diagnostic process, we probably do qualify for the survey.
     
  16. RoseE

    RoseE Senior Member (Voting Rights)

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    Apologies for only doing a shallow dive into the research documents. When will I ever learn!? :)

    I did give her some initial feedback last night. But haven't heard back.
     
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  17. fossil

    fossil Senior Member (Voting Rights)

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  18. Hutan

    Hutan Moderator Staff Member

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    Oh, good grief. Feeling a lot less happy about the personal information I have just given her.

     
    Last edited: Sep 18, 2019
  19. fossil

    fossil Senior Member (Voting Rights)

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    I was looking at some MUS papers a while back and noticed that quite a few authors were from NZ, mostly from the psych department at AUT. They seem to collaborate a lot with Kings College.
     
  20. Hutan

    Hutan Moderator Staff Member

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    AWESSoM - another super study acronym to add to the list.

    Krageloh, C. U., Medvedev, O. N., Taylor, T., Wrapson, W., Rix, G., Sumich, A., . . . Siegert, R. (2019). A pilot randomized controlled trial for a videoconference-delivered mindfulness-based group intervention in a nonclinical setting. Mindfulness, 10(4), 700-711. doi:10.1007/s12671-018-1024-y
    Some involvement with mindfulness - I don't know what the study found.

    It looks as though her academic involvement with Moss-Morris was only in 2005, so perhaps she has since moved on from that.

    I've sent her an email asking her whether the survey will investigate anything related to MUS.
     
    Last edited: Sep 19, 2019

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