News from Aotearoa/New Zealand and the Pacific Islands

I don't think Julie Marshall's video interview for the NZ Herald has been shared here yet? It was published on 4th July.

This is a really good short 2 min 41 sec interview with Julie talking about the experience of having ME / #MyalgicEncephalomyelitis.
Note: The date under the title on the Herald page is incorrect. The interview was recorded in May 2019, when the previously shared articles were being prepared. The video is tagged as being 'Premium' content, but is not behind the paywall.

There are quite a few good soundbites from Julie, including this one... "We are not people who are defined by tiredness. We are people who are sick."
https://www.nzherald.co.nz/national-video/news/video.cfm?c_id=1503075&gal_cid=1503075&gallery_id=207291
 
Someone eagle-eyed in the ME Awareness NZ FB group spotted this Stuff opinion piece written by a person with fibro and ME. Mostly about how low benefits are.

https://www.stuff.co.nz/national/11...fits-are-until-theyre-forced-to-apply-for-one

Note also the button at the bottom "View this Assignment". It leads to a page called "Share your news and views". https://www.stuff.co.nz/stuff-nation/assignments/90979605

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Just came across the NZ Health Survey.
https://www.health.govt.nz/nz-healt...and-surveys/surveys/new-zealand-health-survey

It looks like it could be a vehicle for getting prevalence figures of ME and CFS in NZ. Would have to advocate for a question to be included in the rotating module (not core) question set I expect.

The current guidelines for topics are defined here...
https://www.health.govt.nz/system/f...bjectives-and-topic-areas-aug09-nov2010_0.pdf

Current Stakeholders (users?) of the Survey have been asked for feedback by 24th July for both the Child and Adult survey. Not sure if the current consultation process is something that ME Awareness NZ can submit on. But we will investigate and try to do so.
https://consult.health.govt.nz/health-survey/adult-nzhs-feedback/
https://consult.health.govt.nz/health-survey/child-nzhs-feedback/
 
Currently open: online survey, confidential, 35 questions, unclear if they consider chronic illness a disability.

I filled it in regardless in the - probably vain - hope somebody will take note that ME can be as debilitating as a more "traditional" disability.

Invitation to disability rights hui
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June 25, 2019

To inform a new report on the state of disability rights in Aotearoa New Zealand, we’re inviting you to participate in hui around the country, and share your experiences in an online survey.

Next year the United Nations will review New Zealand’s implementation of the Convention on the Rights of Persons with Disabilities. The Disability Convention outlines how governments can protect the rights of disabled people, and is overseen in each country by an Independent Monitoring Mechanism (IMM).

Later this year, the IMM will make a report to Parliament called Making Disability Rights Real. We want to make sure we tell Parliament – and then the UN – about the real experiences of disabled people here, including barriers to participation and opportunities for change.
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http://www.ombudsman.parliament.nz/newsroom/item/invitation-to-disability-rights-hui
 
I’ve just become aware there is some research happening through Massey Uni regarding the experiences of family and friends of pwME. Lead researcher is Dr Don Baken. I don’t know much about it. I don’t know when the window of data collection will close, etc. I am aware Baken has spoken out about the abysmal quality of life of pwME, the need for advocacy and better public awareness. And though he’s from the school of Psychology, he sees the illness as biological.
https://massey.au1.qualtrics.com/jf...MBc8WrxYeV6zFJbUBuw0cf33FsQhS4boBL8ALiLP56ve8
 
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
 
RoseE said:
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
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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?
 
RoseE said:
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
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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.
 
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.
 
NelliePledge said:
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.
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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.
 
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.
 
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RoseE said:
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
  • Our post on our public facebook page

  • 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.
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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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