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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. RoseE

    RoseE Senior Member (Voting Rights)

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    If you are a member of ANZMES you may have recently received the Winter 2019 Issue (136) of 'Meeting Place', their quarterly journal.

    I just want to encourage people to respond to
    • the request for input into the ANZMES strategic plan
    • and to give thought to whether you want to be nominated for the committee
      (or know someone that would be a great addition)
    It would be great to help build up a strong plan and team for our national organisation. There has been a long history of people volunteering for ANZMES (it was founded in 1980, apparently the first ME patient organisation in the world), and it must have felt quite overwhelming at times for those involved - so much to do, and so few involved. There is still so much important work to do for our community, so please think widely. Do you have any friends or relatives that are capable & compassionate managers or organisers, and that are familiar with ME and the issues around diagnosis, care, stigma, research?

    George Connolly, President, has written in his Report on page 4 about working on a strategic plan...
    George has also asked for nominations for the Executive Committee and the Office Bearers (President, Vice-President & Treasurer)...
    I have attached the nomination form. Let me know if you want me to nominate you!
    According to the Constitution, nominees...
    It looks like nominations can be received now, or prior to the AGM (which I believe will be in November?). Last year I remember the Spring issue of Meeting Place had information about the people nominated by then, & voting forms. So perhaps it would be good to get nominations in by August 20th, which I understand is the deadline for the Spring issue that is published around 15th Sep, so that postal voters have the information they need.

    The Purpose statements of ANZMES can be viewed here https://www.register.charities.govt.nz/Charity/CC30391. And are...

    These statements are interesting as they state that ANZMES is focused on supporting and advocating for sufferers of ME/CFS, not just for members.
    The constitution can be viewed under the 'Charity Documents' on the Charities Services site (link above).

    The national office email is info@anzmes.org.nz (or phone 09 269 6374) - if anyone has any questions about the roles or the process.

    It would be interesting to know if anyone here is considering having their name put forward.
     

    Attached Files:

  2. RoseE

    RoseE Senior Member (Voting Rights)

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    We are excited to announce the launch of our new www.m.e.awareness.nz website.
    ____________________________

    We have high hopes that this site will help us to make M.E. more visible in NZ, become a reliable source of information for health professionals, support our advocacy work and bring meaningful change to the lives of people with ME in NZ!

    Key information that can be viewed and shared...

    + What is M.E.?

    + Diagnostic Criteria in use

    + Management strategies

    + NZ specific Support, Advocacy & Research

    + Resources

    This week, this website launch, is one step of many.

    Please share widely. Use it as a resource. And we welcome feedback and ideas for content.

    #MyalgicEncephalomyelitis #MEawarenessNZ #pwME #CanYouSeeMEnow? #MyalgicE #MEcfs
     
    MyalgicE, Aroa, petrichor and 13 others like this.
  3. Andy

    Andy Committee Member & Outreach

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    I would have said this news deserves a thread of its own @RoseE , and it would mean more people would see it. Unless you prefer to keep it solely in this thread?
     
  4. RoseE

    RoseE Senior Member (Voting Rights)

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    Hmmm... What forum would you recommend? Advocacy Projects and Campaigns?
     
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  5. Andy

    Andy Committee Member & Outreach

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    Seems good to me.
     
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  6. RoseE

    RoseE Senior Member (Voting Rights)

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  7. Subtropical Island

    Subtropical Island Senior Member (Voting Rights)

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    Wow, looks like a good step up on what was out there when I was diagnosed. I hope you get lots of constructive feedback here.
     
    MEMarge, Hutan, RoseE and 3 others like this.
  8. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Looks good in terms of content a couple of suggestions in terms of useability. Looking at the what is ME section it is quite a lot of scrolling to get through it to find particular topics. If possible it would make it easier to navigate if the contents list had hyperlinks to the relevant headings on the page. Also for me the text is a little dense if you could increase the space between lines slightly it would be easier to read.

    Hope that’s of some use.
     
  9. RoseE

    RoseE Senior Member (Voting Rights)

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    Thank you!
    We had talked about adding hyperlinks to the Contents List and a bit or a reorg - just hadn't got to it. Thanks for reinforcing the need for it. :)
    I see your point about the spacing needed between the lines.
    We greatly appreciate you taking the time to help us improve usability! :) So easy to loose fresh perspective when you have been developing something.
     
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  10. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    No probs i did this as part of my old job so every page I go on I’m spotting issues can’t help myself good to be a bit useful :thumbup:
     
  11. RoseE

    RoseE Senior Member (Voting Rights)

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    M.E. Awareness NZ has some other news to share...

    Dr Richard Medlicott, currently the Medical Director of the Royal NZ College of GP’s, is partnering with M.E. Awareness NZ to raise funds for evidence-based M.E. education opportunities for GP’s. Richard has extended family members with ME, and this family is very active in advocacy for ME in NZ.

    Richard's used his resignation email to announce this fundraising project, and this email reached every GP in New Zealand this week! He is using his participation in The Pioneer Mountain Bike event in December 2019 to challenge GP’s across the country to donate to this cause. The fundraising event has also been announced in the RNZCGP newsletter and the NZ Doctor online magazine.

    fyi additional info
    • To check out the campaign (Richard is urging GP’s to get on board as the main contributors!) view https://givealittle.co.nz/cause/doc-pioneers-for-me
      Note: The page still shows as under moderation - as we get our act together and become a registered charity.
    • Our post on our public facebook page
    Edited: to tidy up the external links.
     
    Last edited: Aug 19, 2019
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  12. Subtropical Island

    Subtropical Island Senior Member (Voting Rights)

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    Hi @RoseE, could you please fix the link to ‘give a little’ so that it’s not via a Facebook link? Or is that intentional in some way?

    (The link is currently: https://l.facebook.com/l.php?u=https://givealittle.co.nz/cause/doc-pioneers-for-me?fbclid=IwAR07TgbocL-OXe9gSIphUMc_elQQ3113ZRj5qwccwGgS-Tf-NwK8V_QKVrE&h=AT1RUeamzdEI-ro7szk76BOiQknLUgwMFuz2bzbp42LYc7qVObhfz7mrIwsZnasFgigyHlLuuBIuSIxAHuzH1d7xlaO9JVb7mLwkGl6YF8Jy9sdqgPXRusBuPN0ybo-Vz_HRdzbBh9HtS1AkRt5jj-UatNWTsNhQUSRS5-gyiuDkvg0Z
    But it says it’s https://givealittle.co.nz/cause/doc-pioneers-for-me )
     
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  13. Daisybell

    Daisybell Moderator Staff Member

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    This is fantastic!
     
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  14. RuthT

    RuthT Senior Member (Voting Rights)

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    Great challenge & I have shared with some NZ friends & asks them to share too...
     
  15. RoseE

    RoseE Senior Member (Voting Rights)

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    Thanks for highlighting. Apologies, I normally remember to check the link suffix! I have edited now.
     
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  16. rvallee

    rvallee Senior Member (Voting Rights)

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    Wow. That's pretty meaningful. We all painfully know how risky it is to publicly support ME research. Very courageous.

    As usual, but I'll take it. It sucks that we have to depend on the right people contracting the disease in the right circumstances, but I'll take it.

    I guess that we're that kind of deviation from the norm, in that progress for us won't happen one funeral at a time but rather one unfortunate sick child at a time, or something like it. And if the apparent trends continue, that may just be how we get out of being chained in the basement.
     
  17. RoseE

    RoseE Senior Member (Voting Rights)

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    Agreed
     
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  18. RoseE

    RoseE Senior Member (Voting Rights)

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    ANZMES* are involved in some GP education this weekend... :)
    *ANZMES (Associated NZ ME Society), is our national support and advisory charity for ME.

    Edited to add: As shared on their facebook page.
     
    Last edited: Aug 22, 2019
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  19. rvallee

    rvallee Senior Member (Voting Rights)

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    Death* by a thousand facts.

    * to disinformation
     
  20. Daisybell

    Daisybell Moderator Staff Member

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    I think my GP must have been to this. Today she asked me if I had heard of Mel Abbott. I said that I thought anything that placed the emphasis on the person being responsible if they didn’t improve was unethical and that most of these LP-style approaches were simply money-extraction with a hefty dose of guilt and shouldn’t be touched with a barge-pole. Then she took my blood pressure... Amazingly it was normal!!
     
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