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News from Aotearoa/New Zealand and the Pacific Islands

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

  1. RoseE

    RoseE Senior Member (Voting Rights)

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    MECFS Canterbury and M.E. Awareness NZ approached both Emeritus Prof Warren Tate, University of Otago, and Dr Lynette Hodges, Massey University, about making a statement about the suitability of exercise treatment protocols for people with ME.

    These statements have been published on https://m.e.awareness.nz/statements-from-academics

    It is hoped that these statements will assist health professionals, insurers and others, to get up-to-date with current research findings about ME/CFS and appropriate management of the illness.
     
  2. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Thanks. I found the discussion of the exercise intensity of specific activities of work and daily activities towards the end of Dr Hodges’ statement interesting.
     
  3. Dolphin

    Dolphin Senior Member (Voting Rights)

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    This showed up in a search because of reference 6. Unfortunately, I can't access it, so I have no idea how worthwhile it is to highlight.

    https://www.nzdoctor.co.nz/node/19379

    What to expect the first time you encounter a patient with ‘long COVID’
    1 September 2021

     
  4. Woolie

    Woolie Senior Member

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    2,918
    Kia ora koutou, I've just had a conversation with a PwME from Christchurch, who has recently been referred to a psychiatrist as part of the requirements for receiving income protection insurance payments.

    The psychiatrist diagnosed him with somatic symptom disorder :(. His insurance claim has thus been refused :(.

    I think the only way to overturn this (other than through a positive disease diagnosis) would be by getting a second psychiatric opinion. S I was wondering if anyone here knew of an ME-friendly psychiatrist?

    I think its unclear whether this person actually meets the DSM-5 criteria for SSD, because they require excessive anxiety and concern about the health issue. So there's a chance tof challenging the diagnosis.

    To be honest, I'm not even sure ME-friendly psychiatrists exist. But here's hoping...

    PS feel free to pm me if you prefer.
     
    Chezboo, ukxmrv, Ravn and 9 others like this.
  5. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    4,256
    Location:
    Aotearoa New Zealand
    So sorry to hear this. I have concerns that I would have the same fate, so I haven't tried to invoke insurance so far (still hoping to slowly get myself out of this nightmare, with excellent support from my employer).

    It seems a long shot that there even might be an ME-friendly psychiatrist. I might be prejudiced by all I've learned over the last few months, but evidence to date suggests that psychiatric training is likely to be dogmatic in the extreme.

    Edit: typo
     
    Last edited: Sep 24, 2021
    Ravn, Woolie, chrisb and 3 others like this.
  6. Hutan

    Hutan Moderator Staff Member

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    26,525
    Location:
    Aotearoa New Zealand
    Very sad to hear about that situation.

    @Andy, re Woolie's enquiry. A long shot, but perhaps your friend might recall the name of their psychiatrist/psychologist?
     
  7. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

    Messages:
    4,256
    Location:
    Aotearoa New Zealand
    Thanks @Hutan, I looked back up-thread to your linked comment. It was really great to read that many psychiatrists here are actually on-board. I'm happy to be wrong with my earlier comment!

    I might also comment that my own experience of seeing a psychologist was also very positive. I went early on when things were first bad for two principal reasons. I had an open mind as to cause and was prepared to do anything to aid recovery (won't we all?); and I recognised that there would very likely be a secondary detrimental psychological effect.

    I guess the only question then is whether the insurance companies have certain psychiatrists only on their books or whether @Woolie's friend is free to choose any suitably qualified practitioner for a 2nd opinion.
     
    Ravn, Hutan, Woolie and 1 other person like this.
  8. Andy

    Andy Committee Member

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    21,810
    Location:
    Hampshire, UK
    I've messaged my friend and I'll come back once I've got a response.
     
  9. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    I've PM'd you.
     
  10. chrisb

    chrisb Senior Member (Voting Rights)

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    4,602
    It would be interesting to know what insurance companies are involved.
     
    Ravn and ukxmrv like this.
  11. RoseE

    RoseE Senior Member (Voting Rights)

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    340
    I would encourage the person involved to use the Registered Nurse service available through MECFS Canterbury, to access local advocacy and support with health professionals and insurers.
    A self-referral form would need to be completed. Link on this page. https://mecfscanterbury.nz/#/services/individualsupport

    The Canterbury District Health Board has very clear clinical guidance for ME/CFS (based on IOM 2015) on their community and hospital Health Pathways platforms, so one would hope that carries some weight within the region.
    There is also the recent letter from Prof Tate, that ME/CFS is not a functional disorder. Available to download on https://m.e.awareness.nz/statements-from-academics
     
  12. Woolie

    Woolie Senior Member

    Messages:
    2,918
    Thanks so much, everyone, for your help and advice. I'll pass it on to the person involved.
     
    Ravn, SNT Gatchaman, RoseE and 3 others like this.
  13. RoseE

    RoseE Senior Member (Voting Rights)

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    340
    ME Auckland have announced that Prof Warren Tate will be speaking at their online AGM...

     

    Attached Files:

  14. Daisybell

    Daisybell Senior Member (Voting Rights)

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    2,628
    Location:
    New Zealand
  15. Ravn

    Ravn Senior Member (Voting Rights)

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    Location:
    Aotearoa New Zealand
    1) North & South (Oct edition) has a short article from a historian's point of view. It draws a line from the "sleeping sickness" that followed the Spanish Flu to long Covid. Tapanui Flu (ME) gets a mention as do Prof Tate and Whitney Dafoe. Nothing groundbreaking but if the general reading audience feels shocked by the neglect and stigma sufferers past and present have been subjected to, that would be a good thing. Not online unfortunately, nor on my library's Press Reader app.

    2) There's also a good letter to the editor in this week's Listener, in response to a recent article about research into long Covid which briefly mentioned ME (that article was mostly a rehash of another posted previously). Sorry, photo turned out slightly blurry. Would really like to know who wrote that, to find out more, but looks like the person wants to remain anonymous (or maybe needs to, because of the out-of-court settlement).

    Listener letter to editor Oct21 (2).jpg
     
  16. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    2,199
  17. RoseE

    RoseE Senior Member (Voting Rights)

    Messages:
    340
    M.E. Awareness NZ obtained permission to share the 18 September article in the NZ Listener about Post-Viral Illness.
    The Listener is a print only publication, and does not have online content.

    https://m.e.awareness.nz/beyond-the-myth
     
  18. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,525
    Location:
    Aotearoa New Zealand
    An email from ANZMES (one of NZ's ME/CFS charities). Covid-19 is just now starting to spread around the country. Professor Tate is highly respected in ME/CFS circles here and his views will surely solidify vaccination hesitancy in some people with ME/CFS. I'll post it on Experiences of vaccinations thread, where any comments would be better placed.

    Further discussion of this issue here:
    New Zealand: Covid-19 vaccinations for people with ME/CFS
     
    Last edited: Dec 1, 2021
  19. Ravn

    Ravn Senior Member (Voting Rights)

    Messages:
    2,042
    Location:
    Aotearoa New Zealand
    NZ Geographic has a lengthy article on long Covid. Nothing new to members here but it's a good piece and ME gets discussed towards the end.
    https://www.nzgeo.com/stories/the-known-unknowns/

    ANZMES have put some $$$ towards Anna Brooks' research:
    https://anzmes.org.nz/anzmes-sponsors-nz-long-covid-me-research/

    But also still fundraising here:
    https://www.auckland.ac.nz/en/giving/donate/a-z-list-of-funds/long-covid-research-project.html
     
  20. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,525
    Location:
    Aotearoa New Zealand
    From the ANZMES website, about the research.
    As a side note, I found the explanation of the ANZMES logo on the website, beside the detail about the research, rather sad:
    Of course, there's some truth in that, but it makes it sound as if we are sitting around, without lives, until someone comes along to lift us up, and, when they do, we recover. It patronisingly makes us sound like damsels in distress. It suggests nothing about how it is often possible to live a worthwhile life while waiting for the breakthrough in medical knowledge, nor does it recognise the huge part people with ME/CFS have played in progressing the understanding of the illness and fighting misinformation.

    Discussion of the ANZMES albatross logo description continued here
    New Zealand: ANZMES
     
    Last edited: Dec 1, 2021

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