News from Aotearoa/New Zealand and the Pacific Islands

A Commentary article by NZ authors is discussed here:

https://www.s4me.info/threads/curre...tential-for-me-cfs-sweetman-et-al-2019.10341/

Current Research Provides Insight into the Biological Basis and Diagnostic Potential for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
Eiren Sweetman 1, Alex Noble 1, Christina Edgar 1, Angus Mackay 1, Amber Helliwell 1, Rosamund Vallings 2, Margaret Ryan 3 and Warren Tate 1,*
https://www.mdpi.com/2075-4418/9/3/73

 

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

 

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/

 

for everyone's info, I was alerted to this survey from an email sent by https://www.healthychristchurch.org.nz/
They cover off MOH surveys, give advice on submissions, etc. Probably useful not just for people in Canterbury, NZ.

 

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.

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

 

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?

 

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

 

Seems good to me.

 

New thread here
https://www.s4me.info/threads/m-e-awareness-nz-launches-website.10826/

 

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.

 

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.

 

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 )

 

This is fantastic!