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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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    This post concerns those of you living in the Southern District Health Board area.

    The SDHB is developing a Disability Strategy and are doing an online survey during February. It's a short survey and a good opportunity to increase awareness of the needs of invisible disabilities like ours within the local health system. Anonymously if you so choose.

    Please contact Jenny at the Donald Beasley Institute (the company contracted to do the survey) for a link to complete the survey: jconder@donaldbeasley.org.nz.

    I've copied some of the information and survey questions below.

    Purpose of the Disability Strategy:
    Definition of disability:
    Questions (questions 1-7 are quick tick-box types):
     
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  2. Andy

    Andy Committee Member & Outreach

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    I would have thought that was worth being a separate new thread @Ravn to increase its visibility?
     
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  3. Subtropical Island

    Subtropical Island Senior Member (Voting Rights)

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    Maybe. But it needs a post on this NZ and Pacific Islands thread to direct locals to notice it. It’s a very specific location (in a global sense). Assuming you need to live in the Southern District to apply to get the link, numbers won’t be huge. ...or is it open to all NZers?/interested parties?
     
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  4. Ravn

    Ravn Senior Member (Voting Rights)

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    I put it into this thread for the same reason @Subtropical Island points out, it's primarily of local interest. But I don't have any strong feelings about it so feel free to copy to a new thread if you think that would be best.
    Just to be sure, I reread the email I received and the introductory information for the survey. To me both do read as being directed specifically at people living within the SDHB area. Though there's nothing in there that specifically states that others can't comment, but I suspect that's because it didn't occur to them anybody would think of it.

    Maybe some Kiwi from another region could try to request a link, being honest about their location of course, to find out?

    Also, a submission from a national organisation like ANZMES should be acceptable I should think. I've forwarded my survey invitation email to them and also to the local ME association MEISS.
     
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  5. Hutan

    Hutan Moderator Staff Member

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    The Canterbury District Health Board (in the South Island of New Zealand) is offering a scholarship for a specialist doctor or GP based in the Canterbury region to attend the forthcoming Emerge conference in Australia. This scholarship has been funded by the local patient support group ME/CFS Canterbury as part of an ongoing project to build expertise in ME/CFS in the doctors and other medical professionals in the region.

    Many thanks to the Emerge team who have generously provided free conference attendance for the scholarship recipient. Thread here about the conference. @Simone

    Please share the opportunity with anyone who might be able to help find good quality applicants. Applications close on February 14th 2019, so there isn't much time.

    @RoseE @Caramel_Cat

    Screen Shot 2019-02-06 at 5.00.44 PM.png
     

    Attached Files:

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  6. Ravn

    Ravn Senior Member (Voting Rights)

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    Just received the following email about the chance to have a say in a major review of our NZ health system:
    Extract from the website mentioned in the email:
    Survey questions, phase 1:
     
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  7. RoseE

    RoseE Senior Member (Voting Rights)

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    Just reporting back. The sponsorship has been accepted by an awesome GP who has some ME/CFS patients, so has some awareness already. She has been able to organise a locum and other details to attend, even at this late stage.

    Really happy - can you see us beaming?
     
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  8. Ravn

    Ravn Senior Member (Voting Rights)

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    Just found out that my Alma Mater is looking for donations specifically for ME/CFS research.
    https://alumni.otago.ac.nz/donate/myalgic-encephalitis

    No details given. Have emailed asking for more info, awaiting answer.
     
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  9. RoseE

    RoseE Senior Member (Voting Rights)

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    @Ravn Thanks - I presume it is okay to share it on various networks?
    Do you think it is okay to use the term "Myalgic Encephalitis"?
     
  10. Subtropical Island

    Subtropical Island Senior Member (Voting Rights)

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    His research profile page has a list of recent publications at the bottom, the which indicate the sort of thing he’s been focusing on recently:
    https://www.otago.ac.nz/bhrc/staff/otago040606.html

    Changes in the transcriptome of circulating immune cells of a New Zealand cohort with myalgic encephalomyelitis/chronic fatigue syndrome. (2019)
    [ETA: examined genes of 10 patients and found some things - might be planning to expand? There’s a link to read it on the list https://journals.sagepub.com/doi/10.1177/2058738418820402]

    A compromised paraventricular nucleus within a dysfunctional hypothalamus: A novel neuroinflammatory paradigm for ME/CFS. (2018)
     
    Last edited: Mar 6, 2019
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  11. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    In a 2018 video he said he was getting access to a Seahorse analyser for energy analysis - also mentioned in post #11
     
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  12. Ravn

    Ravn Senior Member (Voting Rights)

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    It's on the public website of the University of Otago so I see no problem with sharing a link to that. In fact ANZMES has already done so on FB.

    No idea why they use 'encephalitis'. I just copied and pasted from their website.
     
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  13. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    Maybe one of our New Zealand folks would like to contact Prof Tate to see if this spelling was intended or a typo. His contact detail is here
    https://www.otago.ac.nz/biochemistry/people/index.html#
     
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  14. Ravn

    Ravn Senior Member (Voting Rights)

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    Email sent, asking about spelling and further info re research projects.
     
  15. Hutan

    Hutan Moderator Staff Member

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    A paper has been published pushing the idea of Medically Unexplained Symptoms as a single psychosomatic illness:
    Discussed here: Evaluating Commonalities Across Medically Unexplained Symptoms

    Authors include people from Otago and Auckland universities.
    Maria Kleinstäuber Department of Psychological Medicine, Dunedin Medical School, University of Otago, New Zealand

    Malcolm Henry Johnson, Frederick Sundram, Department of Psychological Medicine, Faculty of Medical and Health Sciences, University of Auckland, New Zealand
     
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  16. Andy

    Andy Committee Member & Outreach

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    John McMillan, University of Otago, Dunedin, New Zealand is the Editor in Chief of the Journal of Medical Ethics, which refused to publish her recent paper, despite positive peer review, claiming that she didn't address reviewers concerns, https://s4me.info/threads/ethical-c...dom-2019-diane-oleary.8082/page-7#post-144941

    Seems like we've discovered a hub of BPS support in NZ?
     
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  17. Hutan

    Hutan Moderator Staff Member

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    Tagging @Carolyn Wilshire.

    Nicola Swain, who is an Associate Professor in the Otago Uni Department of Psychological Medicine was President of ANZMES. Nicola resigned last month I think, after being elected as President for a second year in November 2018. One of the authors (Kleinstauber) of the MUS paper is from the same department.

    I think Nicola is quite a reasonable person and accepted that ME/CFS isn't an 'all in the mind MUS'. Perhaps made for interesting morning tea chats.
     
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  18. Ravn

    Ravn Senior Member (Voting Rights)

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    Saw this on FB: there's going to be a free screening of Unrest with a couple of speakers after (Dr Vallings, Richie Barnett) in Whitford, Auckland on 23 March.

    https://www.restassuredrespitetrust.org/events

    Being a Southerner I wasn't aware of the Rest Assured Respite trust. Has anybody here been? Any good?
     
  19. Daisybell

    Daisybell Moderator Staff Member

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    I’ve just been looking at the Trust on the Charities Register. It was set up in late 2017 with the purpose of providing respite. Currently they are fundraising to purchase a facility - planned to be near Thames. So in its infancy. Just over $20,000 in the bank at the end of the 2017-2018 financial year.
    So it doesn’t look as though there will be service provision for some years....
     
  20. RoseE

    RoseE Senior Member (Voting Rights)

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    Wendy Matthews in Whitford, Auckland is behind this. Yes, as @Daisybell said, the trust is in it's infancy, but very determined, and is developing strategy, action steps and contacts, etc. I think one of their first initiatives is to provide a meal service.

    Wendy is a pwME (severe at the moment), and a member of committee on ANZMES. She organised and presented a petition to parliament in 2012 for better support & care for pwME. I can't put my finger on a link to that right now. I don't doubt that the respite will eventuate - she sees things thru. I think they have a possible location. Sorry a bit vague.
     

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