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News from New Zealand and the Pacific Islands

Discussion in 'General ME/CFS News' started by Hutan, May 19, 2018.

  1. Manganus

    Manganus Established Member (Voting Rights)

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    Compared with what ME specialists say in other parts of the world, I wouldn't complain.

    For sure!
    But isn't that rather typical of clinicians?

    If I were a consulted physician, with my current experiences, I would have said the same (with exception for benzodiazepines, maybe). They can't propose too radical ideas, as for instance CBD or cannabis edibles).

    This is good news. Warren Tate may be right or wrong on certain points, but he for sure has insights.
     
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  2. Ravn

    Ravn Senior Member (Voting Rights)

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    She is and she has :thumbsup:
     
  3. inox

    inox Senior Member (Voting Rights)

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    That's good to hear - amazing how much difference a person can make :)
     
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  4. Hutan

    Hutan Moderator Staff Member

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  5. Hutan

    Hutan Moderator Staff Member

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    Yesterday the Association of New Zealand ME Societies (ANZMES) held its AGM. In addition to the AGM agenda, there were talks from: President Nicola Swain and Dr Ros Vallings, ANZMES' medical advisor.

    The following are my highlights - apologies for any errors and omissions.

    President's report
    • 520 members (regional organisations are affiliated but memberships are separate - people have to hold two memberships to be members of both). More members are needed.
    • One administrator is employed part-time.
    • There was a meeting with the Minister of Health, David Clark, who was interested. There will be another meeting in 2019.
    • There was a meeting with representatives from regional organisations in August.
    • A review of information sheets is underway.
    • Carey Foley (apologies if the spelling is wrong) left a bequest to fund consultations with suitable medical practitioners for those who can not afford it.
    • Another significant bequest is in process.
    • A primary school made a donation resulting from a range of fundraising efforts in support of a pupil with the illness
    • Trying to maintain an active presence on social media
    Treasurer's report
    • The treasurer, who has just been in the role for a year, has moved the accounts onto the MYOB platform and has data stored on the cloud - a pretty significant step forward
    • The Lotteries Commission funding has halved to $15,000 this year - there is a lot of competition from this funding source.
    • Subs were kept at $40 per person per year (I think it might be $20 for beneficiaries)
    • Ros Vallings commented that Work and Income can pay subs as a medical expense for beneficiaries.
    Election of committee members
    I believe that all current committee members were renewed in their roles and two extra members were added.

    Name change
    ANZMES agreed to change its name from Association of NZ Myalgic Encephalopathy Societies to Association of NZ Myalgic Encephalomyelitis Societies on the basis that 'there is now good evidence that there is inflammation in the brains of people with ME'.

    Nicola Swain's presentation
    Nicola presented on depression and anxiety in carers - this was a summary of work she has done as an associate professor at Otago University and relates primarily to carers of older people rather than specifically of PwME. She found significant levels of depression and anxiety in carers, higher than the average for NZ people.

    One finding was that the mental health of carers was related to the level of distress and ill-health of the person they care for. Therefore, addressing the medical and pain control needs of the people being cared for can bring many benefits. I found this to be a good practical finding - rather than, or perhaps as well as, providing workshops on coping, one good strategy to improve the mental health of carers is to improve the well-being of the people they care for. The government is aware of the very difficult situation of many carers and is working on solutions - respite care provision is acknowledged as a major need.

    Dr Ros Vallings' presentation - this was an update on research.
    There are some threads related to Dr Vallings' presentation here, that I will add to as I make them.
    https://www.s4me.info/threads/singing-and-gargling.6611/
    https://www.s4me.info/threads/new-z...lity-type-of-people-with-me.6636/#post-120849

    Professor Warren Tate attended. He chatted before and after the meeting and I just jotted down things later, so the information is a bit patchy. Prof Tate no longer has a large teaching obligation although he continues to educate medical students about ME. He has informed around 1800 future doctors now, so this should improve things as they move through their careers.

    It sounds as though he is managing to continue with a research programme into ME, amongst other programmes into things like Alzheimers, with the help of some motivated researchers and a little funding. There have been some significant donations made by individuals who appreciate what they are doing.

    Dr Eiren Sweetman, who earned her PhD last year will continue to work in the team. Dr Angus Mackay, who has ME himself, has been working with Professor Tate for some years. He mentioned his work is centred around a theory involving the hypothalamus and an inability to control stress.

    The focus of the team in general seems to be on the analysis of cytokines and other molecules from blood samples taken before and after exertion as well as looking at abnormalities of muscle chemistry. They have a funded study on the utility of MitoQ as a treatment of ME. They have just had a paper accepted on chronic inflammation/microglial activation.

    I invited Professor Tate to encourage his team to join us here to explain and discuss their work.
     
    Last edited: Nov 12, 2018
  6. Hutan

    Hutan Moderator Staff Member

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    Last edited: Nov 12, 2018
    ladycatlover and inox like this.
  7. SamF

    SamF Established Member

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    Thanks for the update @Hutan. Was there any detail provided about the meeting with David Clark?
     
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  8. Hutan

    Hutan Moderator Staff Member

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    No, just that it was positive, that David Clark seemed interested. My recollection is that Nicola said that it was David Clark who asked for another meeting next year, but I'm not sure about this.
     
  9. Ravn

    Ravn Senior Member (Voting Rights)

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    Otago Daily Times, 16 Nov 2018.
    Article mentions other winners but here are the bits concerning Prof Tate. Motor Neurone and ME in the same family – what very bad luck!
    I understand he'll be speaking in Dunedin on 24 November, at a MEISS meeting. If anybody is going, please do report back.
    ETA: add link
    https://www.odt.co.nz/news/dunedin/campus/university-of-otago/family-link-makes-tate-award-special
     
  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  11. SamF

    SamF Established Member

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  12. Daisybell

    Daisybell Moderator Staff Member

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  13. Ravn

    Ravn Senior Member (Voting Rights)

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    From the MEISS December newsletter (bolding mine). Not exactly sure what it means but it appears to be saying that currently ME patients are not eligible for home help?

    Unwieldy site but might be worth adding a few ME-disability-specific suggestions, just to get ME on to their radar as a disability. Suggestions may be made in writing or by video.
    Make Disability Action Plan 2019-2022 suggestions here:
    https://dap-workshop.odi.govt.nz/dap-2019-2022#idea-count-container
    https://dap-workshop.odi.govt.nz/dap-2019-2022-video
     
  14. SamF

    SamF Established Member

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    @Ravn I attended the Office for Disability Issues (ODI) Wellington Workshop on the new Disability Strategy. It was led by Brian Coffey, Director of the Office for Disability Issues. Only about a dozen people attended.
    The reason I attended was to get a flavour of what legislative changes are in the pipeline given the 100 Issues raised by the United Nations preceding the NZ upcoming review. I was fortunate to be in a discussion group with Barrister Warren Forster who is working with the government on idea of expanding the ACC system beyond injury to wider health and social services, income support and rehabilitation for all New Zealanders.

    More info here: https://www.forster.co.nz/beyond-in...MOkWPlXFjw9cylSJhpGjT9ojaM7MJlwvUMtYcrGO0OuBA
     
  15. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    @SamF. thank you. That was a really interesting survey.
     
  16. Hutan

    Hutan Moderator Staff Member

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    From the Mindfood magazine
    https://www.mindfood.com/article/curing-chronic-fatigue/

    For years, Fiona Cutts was controlled by her crippling fear of chronic fatigue.

    “I used to be so shy that I could scarcely say my name in public”, Cutts says. “My fear of public speaking was so intense that people would often say to me, ‘How are you going to make this work in the corporate world?’ I did make it work, through a mixture of avoidance and sheer determination, but eventually, the effort caused me to develop chronic fatigue syndrome.”

    Numerous studies show that getting stuck in negative emotional patterns – anger, loneliness, sadness, stress and anxiety – can have a huge impact on physical health.

    Despite being told that she couldn’t heal herself, Fiona pressed on, making space for negative emotions to be processed (not suppressed), trusting her own body and empowering herself with tools and strategies that support her to be more positive.

    And it worked. After six years, Fiona went from having a chronic illness to a life of vibrantly good health.
    Controlled by her crippling fear of chronic fatigue? :rofl: And it seems that a fear of public speaking is what caused her to develop chronic fatigue syndrome.

    This article, which is really more of an ad for Fiona, is dated July 2018 - I came across it at the hairdressers. It goes on to tell us how Fiona now travels the world helping people become well. There's helpful advice there like:
    Perhaps Mindfood needs some letters, as I can imagine that many people would search the Mindfood site for guidance when they start to feel ill. I think that Mindfood, despite its name, aims to be a bit more credible than this article suggests.
     
  17. TiredSam

    TiredSam Moderator Staff Member

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    How lucky people with other illnesses are that at least they don't have to listen to such drivel.

    "I don't think cancer's really working for me, so I've decided to ask it a few questions and make it go away".

    FFS.
     
  18. Ravn

    Ravn Senior Member (Voting Rights)

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    Highlighting this thread about the Australian NHMRC ME/CFS advisory committee draft report currently open to submissions – from anyone, not just Australians. Submissions close 18 February 2019 (Australian time).

    Important for Kiwis as there is a very good chance that whatever the Australians end up with will be noted – and possibly copied - by our own health authorities.

    There's a lot of good stuff in the draft report. Just praising a good point or two, if you don't have the energy for more, will support the committee's positive recommendations.

    However, in some places it is clear the committee couldn't agree and they simply state the differing views. So here it's especially important with feedback for or against certain views.

    If you possibly can, please make the effort to make a submission, even if only a partial one. Our advocates have worked hard on getting the draft report to be as positive as it is. Let's help them push it further by making lots of submissions.

    https://www.s4me.info/threads/australia%E2%80%99s-nhmrc-me-cfs-advisory-committee-draft-report-released-for-public-consultation.7319/#post-131506
     
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  19. Hutan

    Hutan Moderator Staff Member

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  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Metlifecare Senior New Zealander of the Year 2019 finalists named
    The three finalists for the Metlifecare Senior New Zealander of the Year have been announced. They are Sir Mason Durie, Dr Bill Glass and Dr Rosamund Vallings. The winner will be announced at the New Zealander of the Year gala event on 13 February.

    "highly regarded global expert" hmm

    https://www.metlifecare.co.nz/NZOTY-2019-Finalists
     

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