News from Aotearoa/New Zealand and the Pacific Islands

In the first of a three-part series, new data reveals the burden of Long Covid sufferers in New Zealand, from common symptoms to job losses to reduced quality of life

Newsroom spoke to them as part of a new series on Long Covid. This article details the findings of that report. Tomorrow’s will share the testimonies of the four in greater detail. And a third article will ask, where to from here?
LINK

 

part 2
https://newsroom.co.nz/2024/10/09/the-burden-kiwis-with-long-covid-speak-out/

part 3
https://newsroom.co.nz/2024/10/10/the-burden-govts-head-in-the-sand-on-cascading-long-covid/

 

I’ve lost track. How many teen, twenty, thirty, year old women with eating difficulties and or EDS, do doctors in this land want to neglect to death?

One doesn’t have to believe exactly everything a patient tells one about themselves and their body in order to do your best not to kill them.

But making up one’s mind that all your young hungry female patients are attempting to wipe themselves out is going to speed them on their way into an early grave. I can’t help but suspect that the ED treatment isn’t going to be all that great either. Not with this attitude towards patients.



Also the palliative psychologist, when Ruby was reaching the end stages of starving to death, telling her to gain a couple of kilograms, like she wouldn’t have thought of that. After three years begging for doctors to help her eat. If one is supposed to be offering one’s presence with a dying person, so that they may not have to go through the painful process alone, you absolutely have a duty to believe every word they utter about themselves and their condition.

‘Umm I know you’re starving, I don’t know why you don’t just eat!?’

Gaslight right into your early grave.

RIP Ruby.

 

It looks like this is an international issue. We are seeing it regularly in the UK, perhaps better reported now because it has come to be seen as newsworthy. Missing Millions France have reported there are regularly cases there where young primarily women with very severe ME are refused alternative feeding leading to malnutrition and dehydration and worse. My memory is not brilliant but haven’t there been a couple of cases in Scandinavia over the last few years?

Is that we don’t hear of it in more countries because it is not being recognised and reported? How many deaths are wrongly hidden/lost under an assumption of anorexia?

Presumably once malnutrition and dehydration have set in, unless the patient is carefully listened to, differential diagnosis becomes difficult as which presenting symptoms relate to any underlying condition and which to nutritional status.

From a very brief web search for example in the USA there are over 10,000 deaths a year attributed to anorexia nervosa (Deloitte Access Economics. The Social and Economic Cost of Eating Disorders in the United States of America: A Report for the Strategic Training Initiative for the Prevention of Eating Disorders and the Academy for Eating Disorders.June 2020. Available at: https://www.hsph.harvard.edu/striped/report-economic-costs-of-eating-disorders/). Given how fraught the situation relating to such deaths and the management of anorexia can be anyway, it is conceivable that other missed conditions particularly in young women just get subsumed.

As we have seen here in the UK not even highly motivated and formed media savvy families are enough to force appropriate alternative feeding being investigated and possibly/probably preventing death.

 

Yes you’re correct of course.

I feel that authorities of ANZ have less excuse to keep doing this since the population
is smaller than many places and there are fewer doctors to choose from for patients and that these doctors ought to know about it when they kill their patients, considering that no one’s that far away from each other there.

But I guess that’s cancelled out by the fact that, as internationally, if you designate certain patients medically without need of treatment or else un-save-able, then you’ve made their deaths not your responsibility no matter how many of them die.

 

There is one particular bombastic Psychiatrist, imported from the USA, who has been involved with at least a few of the patients who died in NZ. He is also rolled out by an insurer to help deny claims from PwME.

 

It’s like innocent prisoners can’t go for parole if the don’t admit doing the crime and take responsibility for it

but you can’t appeal if you do

 

The Spinoff: The impact of long Covid will be huge. So why is New Zealand doing nothing about it?
Rohan Botica (Te Ātihaunui-a-Pāpārangi, Ngāti Tūwharetoa) is a lived-experience researcher and co-founder of DysImmune Research Aotearoa.

 

Contrast the above with this Newsroom piece today (currently paywalled). The first sentence reads

Don't know where the "hundreds" comes from, presumably an error, but that sentence says all you need to know about how seriously the NZ government takes Long Covid

 

And considering that it's probably above average.

 

Medical Assistance in Dying

After 6 deaths, 6 years ago, on November 17, two days ago, the New Zealand Herald featured an article reporting on an inquest into these deaths. The original with photos of the 6 children is linked. The text is below the link. The action in this post happens right at the bottom of the NZH article and beyond.
LINK

 

Haven't watched yet

Webinar for health professionals for continuing medical education credits

https://myhealthhub.co.nz/navigating-the-complexities-of-me-cfs-and-long-covid-2/

 

Canary UK has covered Rhiannon Purves’ plight in the NZ health system. She has now been readmitted to Wellington Hospital.
https://www.thecanary.co/long-read/2024/11/28/severe-me-cfs-new-zealand/

 

Thanks for posting @Hutan. I hadn't noted the Toby Hillman interview from last week, but I thought it was very good. As commented by the interviewer, one might have imagined the general audience would want to move on from Covid/LC but no, ongoing significant interest and engagement.

I do also note that Australia (or at least Victoria) is going into a summer Covid wave now and I can't imagine NZ will avoid it. Painful to know that more people will be joining our ranks some of whom may end up severely affected.

ABC News: COVID-19 wave hits Victoria with cases and hospitalisations on rise ahead of festive season

 

Disability Support Services Operational Policy

https://fyi.org.nz/request/28659/response/113273/attach/3/OIA3500 Documents.pdf

This came up in a Google Scholar search.
Despite the first page, it looks like it was created in the last year or 2 and is mainly about ME/CFS.
I'm guessing it became available under a freedom of information request given the URL.
I‘ll leave it to others to see if it is of any interest to people in New Zealand.