News from Aotearoa/New Zealand and the Pacific Islands

Brilliant news Hutan!

Looks like I was wrong about my assessment that this submission process was a tick box exercise. Tbh, when I was writing my much shorter submission and encouraging (ok, badgering) others to do the same I thought it was pretty much a waste of time, apart from getting a few points on the official record for some investigative journalist to find in the distant future. Though I also figured there's always the tiniest off-chance somebody with the power to do something takes notice, especially if several submissions come in making similar points. Especially if one of those is a well-argued 50 pages long!

Couldn't agree more. Unfortunately, for the more severely affected, we're often doomed by Zoom. Ironically the pandemic may have made things worse in that respect. A lot of people now seem to think of Zoom as the solution to all accessibility issues.

For example, prior to the recent health system reforms, I tried to insert myself onto my then local health authority's community & patient advisory board. They were keen initially (don't think they got many volunteers tbh), and very understanding and accommodating of the fact that I wouldn't be able to attend meetings in person. But when I explained I wouldn't be able to participate in Zoom meetings either, they couldn't get their heads around that at all. I suggested some workarounds but those must have been deemed beyond "reasonable accommodations".

Is this what you're referring to?

https://jobs.msd.govt.nz/go/Whaikaha/9001500/

 

Ah, that makes much more sense. Thanks.

 

Emeritus Professor Warren Talks gives a talk at the ANZMES 42nd Annual General Meeting on Saturday 19th November 2022 about his latest research into ME/CFS and Long COVID.

https://www.youtube.com/watch?v=weQ0kK0Fgrs

 

At the ANZMES 42nd Annual General Meeting on Saturday 19th November 2022, Dr. Ros Vallings talks about the latest ME/CFS and Long COVID research presented at the July 2022 IACFS Conference. This talk is followed by a Question and Answer session including Prof. Warren Tate.

https://www.youtube.com/watch?v=xF-r7Ft7tKw

 

Anyone know any more about this?
On the face of it this sounds like something some of our members could consider contributing an article to[ETA: the topic being research methodology in ME/CFS]?

 

Not encouraging...

 

Uh-oh...

DNRS discussed here https://www.s4me.info/threads/annie-hoppers-dynamic-neural-retraining-system.918/

 

Special Report: The rising, rippling cost of Covid-19
Jamie Morton, NZ Herald 31/12/22 - paywalled

New Zealand spent the first two years of the pandemic trying to keep out Covid-19, and the third trying to blunt its blow. Now that we’re well and truly living with the coronavirus, what will be the ongoing human cost?

 

Founding LC Research published today by Te Herenga Waka/Victoria University, Wellington with recommendations for the Ministry of Health.

It is in English and Te Reo Māori.

This is the link for the executive summary looking at the Covid Response and the recommendations for LC in Aotearoa New Zealand

Long Covid is on Page 27-29. Recommends it be made a disability, establish long covid clinics, the importance of lived experience and peer support, full income and disability support.

https://covidaotearoa.com/wp-conten...-Mate-Korona-Executive-Summary-2023-01-24.pdf

There is a lengthy report which includes discussion of ME epidemiology amongst other things. Haven’t read it yet as 138 pages long. One step closer to getting ME recognised as a disability….

https://covidaotearoa.com/wp-conten...kawe-o-Mate-Korona-Full-Report-2023-01-24.pdf

ETA: searched the pdf document - no mention ME, ME/CFS. Post-infection, post viral. Must be hidden in the reference papers…. Still a harrowing read of experiences of pwLC

 

Some interesting findings on the incidence of long covid and use of health services following above population survey.

Please note: Tangata Whenua means people of the land (the indigenous Māori of Aotearoa) and Tangata Tiriti - people of the treaty (all non Maori).

 

Media reporting on LC study….Prof Taite comments (no mention of ME despite him researching ME and LC metabolomics etc). Unfortunately (or unsurprisingly) the epidemiological study (with qualitative interviews) - with a result finding 1 in 5 kiwis (400,000) have long covid is disputed by the Minister of Covid Response/MOH on both main television channels. Some acknowledgement that it is disabling but apparently not as much as others and assigning this to the newly created disability ministry and it’s election year…..

https://www.newshub.co.nz/home/new-...19.html?utm_source=dlvr.it&utm_medium=twitter

 

Survey covered original and delta waves (up to Dec 2021) with 12 months of the study period pre-vaccination. While I doubt that the Omicron wave would extrapolate out to 3-400,000 LC cases, I think the Minister's response is inadequate:

 

Gutted, I know Dr Vallings has always believed ME is closely linked to stress (well, yes, we all know stress makes our illness worse but it is pretty stressful having ME and no treatments or support from the medical profession - and her stigmatisation has been damaging to the ME community, in my opinion. That is why I largely ignored her work, did read her book, but the evidence base for some of her stuff had been excluded overseas with EBM but she was still touting it. Especially supplementation, so expensive…..and little to no evidence. And she and ANZMES didn’t reject LP and the Switch strongly enough and now look what is happening in our country….

As for Prof Tate, I think he is very much over-estimating neuroplasticity and must be under some pressure for media interviews and causation explanations and apparently now health economics and getting funding for his ME/LC research (and maybe he has given up critical thinking as LP takes hold in other departments. Cynical speculation)

I worked in mental health for 30 years in NZ and watched the stress diathesis model and psychosomatic model develop (BPS) in the 80’s and every other psychiatric and psychological theory, (new one’s being trotted out all the time), each running it’s course and evolving (often not in good ways for ME).

I am afraid to say no one I saw within the mental health service “cured” their psychiatric condition, let alone physical illness eg. ME, FM, POTS and everything else (including aging) - due to neuroplasticity.

No special device/therapy or medication is going to rewire your brain and you will put in a lot of hard work, time and energy for unclear results that could be learnt elsewhere and free. I can’t believe he has fallen for this woo….and so disappointing he is discussing this non-evidenced treatment/verging on quakery with the media.

They are grossly conflating neurobiological and psychology research. It is hopium at work. You can learn some helpful techniques to manage stress and yes, that is a little neuron connecting with another and over time helps with coping with illness… but here we all are, getting more severe.

I feel we are going back to the dark ages of pseudoscience in Ao/NZ when we finally got EBM going in the right direction with NICE. I really want better clinical leadership from ANZMES and looking forward to what further changes the new CEO will have, now they have got the disability petition into parliament and what the new ME clinician is doing for pwME, who has taken over from Dr Vallings now she is formerly retired from clinical practice but is still mentoring Dr Jargese…(who is based in the Waikato and works with a local public physician).

edits for typo’s