News from Aotearoa/New Zealand and the Pacific Islands

Ravn said:
I've no idea of why it was used in the first place, or why it kept being used for so long.
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I think it was because someone had decided that there was no evidence of brain inflammation. At least, the reason given for the proposal to change ANZMES' name to include 'encephalomyelitis' rather than 'encephalopathy' at the 2018 AGM was that it was felt that there now is evidence of brain inflammation.
 
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?).
 
Ravn said:
She recently updated the Health Navigator page on POTS (we can only see the patient version)
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From a quick skim, the patient version is pretty good I think.

A couple of things that could be improved:
While there is no cure for POTS, some people grow out of it
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I think some different words would have been better here; it makes it sound a bit like a childish behaviour problem. For example it's noted that POTS can start during pregnancy, so is a pregnant woman going to grow out of it? Or might she 'recover with time'?

The important thing is to understand the issue and not panic.
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Who is panicking? Would that be written about a condition that isn't
most common in girls and women aged 15–50.
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?
 
Hutan said:
Thanks SlySaint. It does look as though more than just the name needs updating - it's very easy to get the impression that it's a not very serious condition of middle aged women who get depressed and irritable and fatigued.
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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)?
 
I'll write and suggest that they might like to get in touch with HealthInfo (the public version of the Canterbury HealthPathway) for an up to date version. I guess a note to Health Navigator about those couple of problems with the POTS content might be worth a go too.

Not to prevent anyone else writing though. Perhaps comments from a few people might emphasise the need for a revision.
 
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"

 
I'm slightly concerned by the reference to the Nancy Klimas transcript. There's some speculation there, that people with ME are probably at greater risk, that cells protecting us from viruses (including, it's inferred, coronavirus) are less functional. The phrasing is odd too, 'because you like to reactivate old viruses'. It seems alarmist, given the lack of evidence.

If people have been getting their groceries delivered before now, then I would have thought all that they would need to say is 'I have ME, a chronic health condition, and that is why I regularly get my groceries delivered'.

If people haven't been getting their groceries delivered before now, then I would have thought all that they would need to say is 'I have ME, a chronic health condition. One of the symptoms is orthostatic intolerance (with a reference to the CDC website) which means that I have difficulty standing, including when in queues.' If dizziness and the possibility of fainting are symptoms, then that could be mentioned and would be pretty compelling, because no supermarket staff member wants to pick a person up off the floor right now.

ideally ANZMES would put a credible statement on their website that people could refer to, and would also be having a word with Countdown and Foodstuffs to make it clear that people with ME should qualify for priority delivery services. I've mentioned this to an ANZMES committee member.
 
Hutan said:
If people have been getting their groceries delivered before now, then I would have thought all that they would need to say is 'I have ME, a chronic health condition, and that is why I regularly get my groceries delivered'.
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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]
 
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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]
 
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ANZMES has been successful in getting a code for priority delivery from Countdown:

"Countdown supermarkets have been very busy these past few weeks and there has been high demand for our online shopping service. We are about to announce how we will be working to prioritise vulnerable customers who want to use our online shopping service. We know that your members will be some of these customers and we want to help you help them.

Please ask your members to register for Countdown online Shopping at shop.countdown.co.nz.

After that they will need to complete this form:

https://shop.countdown.co.nz/shop/content/priority-assistance

Please ask your members to enter the code (note from Hutan: use the conversation facility to contact me if you need the code) in the field where it asks for a Super Gold Card number so we know they are a member of your organisation and we can work to filter them through the process as quickly as possible. If they have a Super Gold Card they can enter that number too, after the code.

Once we’ve processed their application they will receive an email to confirm that they have been accepted into the Priority Assistance group.

What this will mean is that when they shop online they will see dedicated delivery time slots on our website that others can’t see subject to availability. These delivery times will be reserved for use by our Priority Assistance customers. There aren’t many time slots at the moment due to heavy demand but we are working to grow capacity and there should be more availability over the next week or so.

Priority Assistance customers will still be subject to the same limits as other online shoppers and everything else about the service will remain the same, as it is for other shoppers. All deliveries will be Contactless which means our drivers will just place the groceries on the doorstep, knock on the door and go. They will also send you a text message to let you know your groceries have arrived."​
 
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