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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. Hutan

    Hutan Moderator Staff Member

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    I forgot to say, thanks to @fossil for alerting us to the Moss-Morris connection.

    I have received an email from Wendy Wrapson. My fears are allayed; she says that this survey is genuinely looking at how chronic illness (mostly taken as whole rather than specific illnesses) affects social connectedness.

    I've asked for permission to share her email here so you can make up your own mind. I'm feeling ok about my participation.
     
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  2. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    Wessley did a visit there (and maybe a sabbatical?) in the 1990's. I remember his interview on National Radio which was non-critical. He organised a conference or two whilst there.
     
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  3. Hutan

    Hutan Moderator Staff Member

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    I heard about Protandim today; it sounds as though there is going to be a big marketing push across New Zealand for this herbal supplement shortly. It is supposed to help all sorts of ailments because it helps the body heal itself. I've made a thread here to look into it a bit further.
     
  4. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    I imagine most people on this thread are well aware of this research and this facility to donate. However I did a search on Twitter and nobody seems to have posted the link there ever.
    So I thought I would post these links in case anyone wants to use them to retweet/share.


     
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  5. RoseE

    RoseE Senior Member (Voting Rights)

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    Thanks @Tom Kindlon for the prompt!

    M.E. Awareness NZ did share info about the donation opportunity on twitter earlier in the year. But we linked to our facebook page, as Prof Tate's page didn't have any info about what he was studying (and our facebook post did). There was also a typo in the url (the Otago Uni alumni team had used 'encephalitis' instead of 'Encephalomyelitis' which we weren't too keen on). We contacted the alumni team (& Prof Tate) and they have since provided a new url. And I see now there is some info about the research :)

    Too much background info probably. haha.

    Anyway... going off to share on twitter now. Thank you. :)
     
  6. RoseE

    RoseE Senior Member (Voting Rights)

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    We have an opportunity people, and would appreciate your wisdom /media release writing skills.
    Another article on ME is about to be published in a NZ publication, and M.E. Awareness NZ has been asked for an official comment about the state of funding for ME research in NZ. (Prof Tate has been interviewed for this, along with a pwME and a doctor.)

    What would you write? Looking for some ideas.
    @Ravn @Hutan @theJOYdecision

    What do you think about this?...

    Research funding in New Zealand and around the world is woefully inadequate given the prevalence of the disease and the level of disability that ME brings to people’s lives. We need researchers focused on understanding the sub-groups in ME, and on finding treatments and recovery pathways. It is not okay that there are no diagnostic tests and not even one drug or treatment specifically approved for ME. People with ME, some who have been ill since the Tapanui Flu epidemics in NZ during the 1980's, are being denied even a basic quality of life, and research is the key to remedying this.

    A small number of New Zealand researchers are engaged in ME-related research that is making an impact internationally, but their access to funding is severely limited. There is an urgent need for a contestable NZ grant fund to be established for ME research, to identify interested researchers and increase the opportunity for collaboration within New Zealand and internationally. The estimated 20,000 New Zealanders with ME, including 3,000 young people and children, deserve it.​

    We have under a day to refine something impactful /quotable. i.e. Need it by Tuesday 8pm NZ time. In 19 hours. :)
     
  7. Trish

    Trish Moderator Staff Member

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    Looks good to me. Just a couple of comments:
    The phrase 'recovery pathway' rings alarm bells for me. It sounds too much like the sort of phraseology used by the likes of LP and quack protocols that combine assorted unproven nutrients, psychological therapies and positive thinking. I'm sure that's not what you meant.

    Possibly something more specific about just how poor the quality of life is for pwME too.
     
  8. MyalgicE

    MyalgicE Senior Member (Voting Rights)

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    It’s good. I’d suggest taking out ‘and around the world’ out of the first line. Giving the impression NZ is lagging might be more effective than admitting the rest of the world aren’t doing much, because then people might think “ah well, if the rest of the world isn’t bothered, why should we be?”.

    If there is a rivalry with Australia, you could add that the Health Minister this year announced $3m in medical research and said “it’s real, it’s significant, it’s important” and you want to see NZ Health do the same thing.

    More of his quote if you wanted it: “Myalgic Encephalomyelitis and chronic fatigue syndrome are major issues that can have a profound impact on individual and community life. 240,000 Australians – at least – have some form of ME or CFS. Of those a quarter can be housebound with the same impact on them as MS or any of the neurological conditions so it can be a crippling and catastrophic diagnosis for an individual.“

    How much has NZ spent on research?
     
  9. RoseE

    RoseE Senior Member (Voting Rights)

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    It would have been good if I had thought of doing some research on that!
    I think it is probably in the $10,000s. And I know that right at the start (tapanui flu era) requests for promising research were declined. Where might we be now, if that research had happened!?
     
  10. Ravn

    Ravn Senior Member (Voting Rights)

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    Sounds pretty good.

    I agree with @Trish's and @MyalgicE's comments.

    Re funding, Prof Tate might know?

    Here's an attempt to combine the original draft with @Trish's and @MyalgicE's comments. I assumed a word limit (beware subeditors just cutting the last paragraph when they can't fit all the text) so I chopped and pruned a bit to arrive back at the same length of text.

    Research funding into ME in New Zealand is woefully inadequate given the high prevalence of ME and the level of disability it causes - about a quarter of people affected are too ill to leave their homes and some are too ill to leave their beds. It is not okay that many decades after the Tapanui Flu epidemics of the 1980s there still are no diagnostic tests and not even a single drug or treatment specifically approved for ME. As a result people with ME, some of whom have been ill since the Tapanui Flu epidemics, are being denied even a basic quality of life. Research is the key to remedying this.

    A small number of New Zealand researchers are engaged in ME research and are making an impact internationally but their access to funding is severely limited. Australia recently announced AU$3 million for biomedical research into ME. There is an urgent need for a similar contestable grant fund in NZ. The estimated 20,000 New Zealanders with ME, including 3,000 young people and children, deserve nothing less.
     
  11. Ravn

    Ravn Senior Member (Voting Rights)

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    The postal voting papers for the ANZMES elections have just arrived - and I'm confused.

    There is only one nomination each for President, Vice President and Treasurer. You have the option of voting for them or abstaining. Quite what's the point of a vote here, surely they are automatically elected?

    For the Executive Committee there are 12 nominations and you can vote for as many as you like. You can also vote against or abstain. It doesn't say, unless I missed it somehow, how many people out of the 12 will be elected to the committee, nor if there is a minimum number of votes they need to get, nor how negative votes are counted - does each no negate one yes?

    Also a bit weird that you have to put your name on top of the voting paper so the person counting the votes can see who voted for or against whom.

    Anyway, if anyone knows the track record, good or bad, of any of the nominees, I'd love to know. Maybe by PM, for discretion.

    Not much time to vote, deadline is 19 October.

    @Hutan, you might know how the voting system works?
     
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  12. Hutan

    Hutan Moderator Staff Member

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  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    don't know if this has been posted
    upload_2019-10-14_13-40-37.jpeg

    https://www.eventbrite.co.nz/e/what...ome-an-update-on-research-tickets-76132286719
     
  14. Hutan

    Hutan Moderator Staff Member

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    Thanks @Sly Saint.

    We are hoping to film it. The target audience for the Thursday talk is medical professionals although everyone is welcome. If you can help us publicise the event, please do.

    Eiren is in Professor Warren Tate's team; she manages the University of Otago ME/CFS Research programme. Eiren will also be speaking at the ME/CFS Canterbury AGM in Christchurch on Wednesday 30 October. This presentation is for a more general audience. PM me for details if you are interested.

    Prof Tate will be speaking at the ANZMES AGM on 2 November in Auckland. I expect he will cover similar ground.
     
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  15. Hutan

    Hutan Moderator Staff Member

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    There's a thread for the Christchurch talk by Dr Eiren Sweetman here.
    Thanks @John Mac
     
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