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News from Aotearoa/New Zealand and the Pacific Islands

Discussion in 'Regional news' started by Hutan, May 19, 2018.

  1. Ravn

    Ravn Senior Member (Voting Rights)

    Messages:
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    Location:
    Aotearoa New Zealand
    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/
     
    hibiscuswahine, Ash, bobbler and 4 others like this.
  2. Hutan

    Hutan Moderator Staff Member

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    Location:
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    Here's the link - it wasn't super easy to find:

    Expressions of Interest for the Office for Disability Issue's Nominations Database
     
  3. Ravn

    Ravn Senior Member (Voting Rights)

    Messages:
    2,042
    Location:
    Aotearoa New Zealand
  4. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    2,199
    hibiscuswahine, Ash, Woolie and 4 others like this.
  5. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    2,199
    hibiscuswahine, Ash, oldtimer and 4 others like this.
  6. Ravn

    Ravn Senior Member (Voting Rights)

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    2,042
    Location:
    Aotearoa New Zealand
    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]?
     
    Last edited: Jan 13, 2023
  7. Ravn

    Ravn Senior Member (Voting Rights)

    Messages:
    2,042
    Location:
    Aotearoa New Zealand
    Not encouraging...
     
    hibiscuswahine, Ash, Lilas and 5 others like this.
  8. Ravn

    Ravn Senior Member (Voting Rights)

    Messages:
    2,042
    Location:
    Aotearoa New Zealand
    Uh-oh...
    DNRS discussed here https://www.s4me.info/threads/annie-hoppers-dynamic-neural-retraining-system.918/
     
  9. Sean

    Sean Moderator Staff Member

    Messages:
    7,044
    Location:
    Australia
    neuroplasticity

    How to admit you don't know what is going on, without admitting it.
     
  10. Hutan

    Hutan Moderator Staff Member

    Messages:
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    Location:
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    That's really disappointing. That's New Zealand's most eminent scientist with any interest in ME/CFS, promoting DNRS; that's people in the national ME/CFS charity promoting DNRS. Warren has promoted reiki in a recorded talk before, and I tried my best to ignore it.

    It's like we live in a parallel universe or something. How do smart people believe this stuff? These are all people who mean well, but..

    Does anyone else think of a 'Do Not Resuscitate' note, signed by Science when they see DNRS, as in, science is at death's door and has lost the will to live? Ugh, I'm still making exasperated sighing noises. Maybe I need to go watch something on Netflix.
     
  11. Trish

    Trish Moderator Staff Member

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    51,871
    Location:
    UK
    That is so disappointing to hear of Tate being taken in by quacks and being used by them to give them advertising.
    It sounds like it might be something for S4ME NZ members to get together to write to him explaining the lack of scientific backing for these treatments, and the harm he's doing by spreading false info.
     
  12. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,522
    Location:
    Aotearoa New Zealand
  13. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

    Messages:
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    Location:
    Aotearoa New Zealand
    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?

     
  14. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,522
    Location:
    Aotearoa New Zealand
    Jamie Morten, the NZ Herald journalist, has had an interest for post-infection conditions for a while now, if I'm not mistaken.
     
  15. hibiscuswahine

    hibiscuswahine Senior Member (Voting Rights)

    Messages:
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    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
     
    Last edited: Jan 26, 2023
  16. hibiscuswahine

    hibiscuswahine Senior Member (Voting Rights)

    Messages:
    464
    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).

     
    Last edited: Jan 26, 2023
    alktipping, Ash, Ravn and 4 others like this.
  17. hibiscuswahine

    hibiscuswahine Senior Member (Voting Rights)

    Messages:
    464
    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
     
    Ravn, alktipping, RedFox and 5 others like this.
  18. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

    Messages:
    4,256
    Location:
    Aotearoa New Zealand
    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:

     
    Ravn, alktipping, Lilas and 6 others like this.
  19. hibiscuswahine

    hibiscuswahine Senior Member (Voting Rights)

    Messages:
    464

    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
     
    Last edited: Feb 12, 2023
  20. Sean

    Sean Moderator Staff Member

    Messages:
    7,044
    Location:
    Australia
    The frequency that the labels and theories change is a good measure of how poor the actual understanding is, and how unwilling those selling the misunderstandings are to admit it.
     

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