News from Aotearoa/New Zealand and the Pacific Islands

Sly Saint said:
Complex Chronic Illness Support (CCI Support)

https://www.supporttrust.org.nz/support-organisations/cci-support-organisation-nz/
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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).
 
We have discussed this group previously. My conclusion was that it was run by people who were well-meaning but captured by BPS and straight-out pseudoscience ideas, leading them to focus on providing courses that had people with ME/CFS examining their personalities and behaviour in order to identify necessary changes.

However, the leadership and field officers of the group seem to have changed very recently, so things may be different. I'll add some links when I find them.

Some recent discussion about board changes:News from New Zealand and the Pacific Islands
An older thread about CCIS and a course they were regularly running:NZ - Complex Chronic Illness Support - Towards Wellness course
 
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https://www.sciencemediacentre.co.nz/2021/04/29/long-covid-in-new-zealand-expert-qa/

Long COVID in New Zealand – Expert Q&A
Expert Q&A | Published: 29 April 2021

New Zealand has been praised for its initial COVID-19 pandemic response, but what do we know about long-term health effects and how Kiwis are impacted?

A WHO policy brief published earlier this year says around a quarter of people who have had the virus have symptoms that continue for at least a month, but one in 10 are still unwell after three months. However, understanding of how to diagnose and manage long COVID is still evolving.

The SMC asked experts about long COVID in New Zealand, including similarities with ME/CFS (sometimes called chronic fatigue syndrome).
  • Dr Anna Brooks, cellular immunologist and Senior Research Fellow, Maurice Wilkins Centre, University of Auckland
  • Emeritus Professor Warren Tate, biochemist, molecular biologist and ME/CFS expert, Brain Health Research Centre, University of Otago
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the article said:
Fiona Fraser attended the course courtesy of Jenny Oliver.
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Fiona Fraser is the writer of the article and Jenny Oliver is the LP practitioner - basically it's an ad.

We share our observations from the past 24 hours, so I tell Oliver about my wobbly legs. Her explanation is that after three hours spent in a state of utter peace, that aching came from the cortisol draining out of my body.
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It's just nonsense.
 
I've written a letter of complaint - emails can be sent to the editor of the Life Style section - Emma.chamberlain@stuff.co.nz.

It's nice to see the ANZMES website does not endorse the Lightning Process - their comment is quoted in the article.

At one point the article suggests LP can make people with multiple sclerosis symptom free - which is good, as it demonstrates just how far from truth the claims are. Apparently there are 7 LP practitioners in NZ. It's awful to think of all that misinformation constantly spewing out, damaging vulnerable people and their families.
 

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Hutan said:
At one point the article suggests LP can make people with multiple sclerosis symptom free - which is good, as it demonstrates just how far from truth the claims are.
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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.
 
RoseE said:
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/
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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
 
Tom Kindlon said:
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
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I agree. I was not too sure what the latest version of Complex Chronic Illness Support was like, with the new people involved, but I've just had a quick look at their website.

They are still offering the 'Towards Wellness Course" that was endorsed by Dr Vallings and it still looks as though there is some troublesome content. For example, one topic in the course is 'Stress management - calming a maladaptive stress response'. There's no evidence that an abnormal response to emotional stress is causing or maintaining ME/CFS.
 
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
 
Big NZ GP education event. On top of the speaker list features a certain Dame :bawling::mad::banghead:
[...]
Currently Clare not only still leads NHS Practitioner Health but has, in 2020 established a service for problem gamblers; chairs the newly formed registered charity, Doctors in Distress, is now co-chair of the NHS Assembly. In 2020 she was made a Dame in the Queen’s birthday honours, making her the first Maltese person to be knighted. She is a highly respected NHS professional, whose views are listened to by NHS professionals and patients alike.
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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.:nailbiting:
 
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
 
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