News from Aotearoa/New Zealand and the Pacific Islands

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):

 

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

 

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?

 

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.

 

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:

 

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?

 

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.

 

@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"?

 

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)

 

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

 

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.

 

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#

 

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

 

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?

 

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?

 

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....

 

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.