News from Aotearoa/New Zealand and the Pacific Islands

Anyone know anything about this? Sounds good in theory (though not my region) but how to know if it’s just another waste of time and energy?
(Are they selling anything? Do they believe we all fundamentally need mental health services (not incidentally) and just need to be coaxed into it with the right words? Are they so overworked and under resourced that they struggle to help? Who are they funded by? And what does it mean when they say they cover the whole country but are regional? Are they affected by the DHB system or outside it?)
No need to answer all my questions, just wondering if someone already is familiar with them? Because I could spend my day exploring a website but what matters is who the people are behind it (and what they fundamentally think will help).

 

https://www.sciencemediacentre.co.nz/2021/04/29/long-covid-in-new-zealand-expert-qa/

 

Above Q and A is much better than our Science Media Centre would produce. It actually asks people who have an understanding of Long Covid and ME!

 

Kiwis: prepare for another onslaught of have-you-trieds from well-meaning friends and relatives. Awful piece of PR in journalistic drag on Stuff this morning.

https://www.stuff.co.nz/life-style/...-controversial-programme-cure-chronic-illness

 

Then again, this stuff is in the lifestyle section where it belongs, along with horoscopes and a bunch of other stuff. Which is fitting.

 

I just mentioned in https://www.s4me.info/threads/let’s...he-times-london-22-04-2021.20253/#post-343285
that the article https://www.thetimes.co.uk/article/lets-end-the-stigma-of-psychosomatic-illness-whfdlwhph
has made it into the Saturday The Press in Christchurch, NZ (in the Your Weekend insert). Under "It's all in your head". Arrghhh.
But thought NZers following this thread might want to be aware.

Doesn't seem to be online yet.

 

In addition to the actual therapy being bogus, it's worth, I think, also pointing out that the whole LP set up almost amounts to a type of pyramid/ponzi scheme. After the initial cost of their training (which is expensive), LP practitioners have to maintain their number of clients up to a certain number in order to retain their LP practioner status. Also, if I remember correctly, doesn't a certain percentage of their earnings also go back to Phil Parker (?).

I think @dave30th talks about the financial side of things on one of his blogs.

 

Article & video in NZ Herald today (Bay of Plenty Times) for ME Awareness Day. Funded by NZ on Air. Organised by Complex Chronic Illness Support in Tauranga.
https://www.nzherald.co.nz/bay-of-p...-fatigue-syndrome/ER7RKUDCZ24LY5B45GOAHXFPOM/

 

An interview with Kate Duder, Vice President, from ME Auckland was shared on Radio NZ, First Up, today.
https://www.rnz.co.nz/national/prog.../me-cfs-charity-supports-long-covid-sufferers

 

Sympathetic coverage though I was frustrated by the charity talking about "creat[ing] a plan [for the patient] to move forward with their journey towards wellness": I doubt it leads to near or full recovery in many/most cases

 

The charity spokesperson also talked about "chronic fatigue" rather than "chronic fatigue syndrome".

 

It's a bit dispiriting that articles about ME Awareness Day still only run as an 'advertising feature' rather than a normal news story. Anyway, pages 14-15 in this community paper.

Page 14 has the annual awareness article by the local patient support organisation.

Page 15 has a piece by Prof Tate about linking his ME research with Long Covid. He's collaborating with an Auckland (opposite end of NZ to Prof Tate's university) immunologist, Dr Anna Brooks, on this. Maybe this is sowing the seeds of biomedical research interest in ME beyond Prof Tate's team. Actually, interesting other researchers may be the easy bit, relatively speaking. Sowing the seeds for biomedical research funding remains the real challenge.

Hope the link works internationally: https://digital.thestar.co.nz/?edition=STR_2021_05_13

 

@Carolyn Wilshire Just a little reminder about the recording in case you forgot.

 

Big NZ GP education event. On top of the speaker list features a certain Dame

https://www.generalpractice.org.nz/speakers/keynote-speakers
The full programme isn't out yet but my guess is she'll be speaking on mental health. Hopefully ME doesn't come up.

 

Epic e-scooter trek to support charity

I wonder how he'll manage the unpredictability of the illness but maybe longer breaks will be added when necessary. I myself rarely have six good days in a row (but that's just me of course). He is raising funds for ANZMES, by the way.

“It will be a test of endurance and I’m expecting pain in my legs and hips,” he said.

Bobby has been doing weekly pilates with local tutor Wendy Galbraith to help with his core strength.

He is a former active mountain biker and said his chronic fatigue was triggered by the Christchurch earthquakes and later diagnosed by doctors.

There were a lot of misconceptions around chronic fatigue/ME (Myalgic Encephalomyelitis), but basically it was a debilitating and complex disorder characterised by profound tiredness and symptoms that affected several body systems and included weakness, muscle pain, impaired memory and/or mental concentration, and insomnia, he said.

While the exact details of his e-scooter adventure are still be worked out, Bobby is eyeing a route of around 500km that will take him from Ashburton to Dunedin via Geraldine and Tekapo.

His wife Lou will be his support crew.

The trip is expected to take six days and he won’t ride on wet days.​

https://www.odt.co.nz/star-news/sta...anterbury/epic-e-scooter-trek-support-charity