News from Aotearoa/New Zealand and the Pacific Islands

since when did NZ start using Myalgic Encephalopathy?
https://www.healthnavigator.org.nz/support/m/myalgic-encephalopathy/

 

More a matter of when did we stop: ANZMES used Encephalopathy in their name until a year or two ago and last year's fundraising page for Prof Tate used it (though I think it got changed later).
I've no idea of why it was used in the first place, or why it kept being used for so long.

 

That could be because up until May last year, ANZMES had encephalopathy in their official name?

I have emailed Health Navigator to suggest they change it.

 

ta-da!
https://www.healthnavigator.org.nz/support/m/myalgic-encephalomyelitis/

 

So @Sly Saint, how do you notice all of these updates and details? Do you subscribe to everything you come across?
Invaluable to have someone keeping a watchful eye out for news. Thank you.

 

No. I just do bit of Googling and see what comes up. No magic powers or anything....mostly sheer luck, or not, depending on how you look at it

 

Medlicott raises more than $20,000 for ME awareness
https://www.nzdoctor.co.nz/article/news/medlicott-raises-more-20000-me-awareness

(need subscription to view)

 

Dr Vallings looks to be keeping busy:

1) She recently updated the Health Navigator page on POTS (we can only see the patient version) https://www.healthnavigator.org.nz/...thostatic-tachycardia-syndrome-pots/#Overview

2) She'll be giving a public lecture on 13 March 2020 at 2pm (info from latest MEISS newsletter).

Venue: Alexander McMillan room, Community House, 282-301 Moray Place, Dunedin

Topics: latest research and ME management, with question and answer time at the end

If anyone's going I'd love to get a report (are there even any Dunedinites here?).

 

Just posting this as maybe they could do with a nudge to 'update' the name (it says it was reviewed this month).
https://www.southerncross.co.nz/group/medical-library/chronic-fatigue-syndrome-tapanui-flu

 

Would it be worth writing and pointing them towards the new Canterbury Health Pathway as a better example (I can't judge as I don't know what's in the Pathway)?

 

Priority access to Countdown's (supermarket) online shopping:

If you don't have a mobility parking permit that enables use of Countdown's priority service, you can join the Disabled Persons Assembly NZ - DPA and be issued with a code. Membership of the DPA is free at the moment. http://www.dpa.org.nz/join-dpa/introduction

Members of any of the DPO's (Disabled People Organisations) are being issued with a code for Countdown's services, but the DPA is probably the most appropriate for people with MECFS.

As per the update from DPA Chief Executive, Prudence Walker...
"Countdown now has a priority service meaning that disabled people and people who are over 70 can get their shopping delivered quicker. This is still very busy, but they are adding more delivery times. If you need this priority service and don’t have a code you will be able to get one from any of the DPOs soon. DPA already has one we have sent to members. If you want to become a DPA member sign up on our website and we will email you with the code."

Link to facebook post with video and text versions is


There are obviously still issues at times being able to order online because of high volumes on the Countdown site. But hopefully they will be able to improve that in the coming days.

 

Just an update on being accepted for priority services it Countdown...

Have heard from the ME Auckland group that people can write to Countdown directly without any membership or permit...

"I wrote something along the lines of that I have a chronic health condition (ME - myalgic encephalomyelitis) and my GP advised that I go into self isolation as it can have an effect on immunity; also that I have postural orthostatic tachycardia which is worsened by standing too long such as in queues and when rushed/under pressure.
Others in the Auckland group have attached the link to the transcript of Nancy Klimas which states our elevated risk"

 

Currently, the problem is that even applying for consideration is overloaded.
so, my notes:

• if you are very patient (think using the internet in the 1980s) then you can get an application through.
  
• Don’t be put off by error messages that say that you have failed - e.g. when I enter details to log in it tells me there’s an error and should call for help but in fact I am logged in.
• Once logged in it works ok. But there are no slots available for delivery and nothing we can do to find out when such slots might one day be available.

If you don’t need to do it now it might be worth waiting to see if they can upscale in the next few days.

Currently, I won’t be encouraging my list people who need help to retry until the system is working better as even I’m finding it a bit panic-making to be repeatedly assured that things work when they don’t (or error messages saying that they don’t work when they do).


Am waiting now ...so if it clears I’ll be really keen to know?

Currently having to do runs by neighbours which is not ideal for transmission.

[edited when I rechecked the situation]

 

My understanding (from helping others do it) is that it’s not overly difficult to apply for priority services. It’s just that it doesn’t seem to help with the overloading.

[ETA I have an update on this one further down the thread]