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News from New Zealand and the Pacific Islands

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

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  1. Hutan

    Hutan Moderator Staff Member

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    The News from Scandinavia is such an interesting and useful thread, so I thought it could be worth seeing if we could sustain a similar one for New Zealand. We do have some good research being done, some active advocates and even a suggestion from David Tuller that he might get here in the next year.

    I'm not very linked in to what is going on in New Zealand, but would like to be. I know we have quite a few NZ members - so, please let us know about events, advocacy, articles, treatment guidelines, research, anything ME/CFS related in New Zealand.
     
    Hutan, May 19, 2018
    #1
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  2. Ravn

    Ravn Senior Member (Voting Rights)

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    Nice idea @Hutan.

    Always impressed by how much news there's coming out of Scandinavia. I fear there'll be a lot less from NZ but then Scandinavia spans several countries, NZ only the one. Incidentally, do we have any Pacific Island members, resident in NZ or the islands? Would be interesting to get your perspective, too.

    But here's a collection of a few existing NZ threads to get started (result of a quick search so probably have missed some, let me know and I'll add them.)

    https://www.s4me.info/threads/go-slow-a-cfs-like-disease-of-dogs.1063/#post-17954

    https://www.s4me.info/threads/hodge...s-following-repeated-exercise.860/#post-14566

    https://www.s4me.info/threads/im-not-looking-for-pity-just-a-cure-nz-article.4100/

    https://www.s4me.info/threads/video...rt-of-the-circle-of-strength.3392/#post-60305

    https://www.s4me.info/threads/me-in-the-star-dunedin-nz-featuring-local-research.4139/

    https://www.s4me.info/threads/video...to-me-cfs-11th-november-2017.1271/#post-21661

    https://www.s4me.info/threads/phd-t...n-a-me-cfs-pilot-study-group.2288/#post-41620
     
    Ravn, May 19, 2018
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    Woolie, Marylib, It's M.E. Linda and 19 others like this.
  3. Hutan

    Hutan Moderator Staff Member

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    Thanks for the threads @Ravn.

    Good idea. In the spirit of geographic empire building, I've changed the thread name.
     
    Hutan, May 19, 2018
    #3
    Alton, Woolie, Joh and 12 others like this.
  4. Hutan

    Hutan Moderator Staff Member

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    The bad news is that it's pretty hard to find much about ME/CFS in the Pacific Islands. The good news so far is this:

    Infectious diseases of Fiji: 2018 edition. Dr S. Berger
    So presumably this is a resource for medical personnel, and the content is cut and pasted into ebooks for many countries. (Edit: for example, the same material appears in the Vanuatu edition).

    The forward notes that Chronic Fatigue Syndrome has been included because, while the cause is not known, Infectious Diseases specialists often see people with the illness.

    The entry for ME/CFS (page 147) is actually headed 'Myalgic encephalomyelitis' (!!) with synonyms 'Chronic Fatigue Syndrome' and 'Systemic Exercise (sic) Intolerance Disease'.

    Other information in the brief entry includes:
    It's an interesting representation of ME/CFS, but not wholly bad. There is no mention of CBT or GET or MUPS.

    ​
     
    Last edited: May 20, 2018
    Hutan, May 20, 2018
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  5. Hutan

    Hutan Moderator Staff Member

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    An article
    The illness people can't see: living with Chronic Fatigue Syndrome
    by Hannah Gibson

    It's in The Spinoff, an online magazine, fairly major for New Zealand. It claims to have a readership of 700,000 unique readers per month.

    It mentions the IOM report and Unrest.
     
    Hutan, May 20, 2018
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    Woolie, Marylib, Joh and 15 others like this.
  6. alktipping

    alktipping Senior Member (Voting Rights)

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    that is the best article I have read about m e .I have shared it on facebook it is refreshing to read an article that is so well written by a patient with m e without any referrals to the psychology bs we get in the English press .
     
    alktipping, May 20, 2018
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    Inara, MEMarge, Invisible Woman and 2 others like this.
  7. Hutan

    Hutan Moderator Staff Member

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    A short article in Stuff (major online news service)
    Waking up tired and in pain. A teenager's life with Myalgic Encephalomyelitis.
    6 May 2018 by Jared Nicoll


    This one precedes the May 13 2018 Stuff article discussed in this thread
    https://www.s4me.info/threads/im-not-looking-for-pity-just-a-cure-nz-article.4100/

    This one does not have comments.
     
    Hutan, May 20, 2018
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    Woolie, Invisible Woman, alktipping and 3 others like this.
  8. Ravn

    Ravn Senior Member (Voting Rights)

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    The mother of the teenager described in the article has co-founded a Facebook support group, NZcare4ME, including a closed group for carers of kids with ME. The open portion of the group's page looks quite good for general ME info in NZ (not just for carers) so could be worth following for Kiwis on Facebook.
    https://www.facebook.com/NZcare4ME
     
    Ravn, May 21, 2018
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    Invisible Woman, alktipping, Lisa108 and 2 others like this.
  9. Ravn

    Ravn Senior Member (Voting Rights)

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    From the May 2018 MEISS (ME Information and Support Services, Otago & Southland) newsletter:

    I expect there'll be a report on the meeting and talks in a future newsletter but if anybody happens to be going let us know your impressions.

    The research mentioned above may or may not relate to what Prof. Tate recently wrote in The Star (thread and full text here https://www.s4me.info/threads/me-in-the-star-dunedin-nz-featuring-local-research.4139/)

     
    Ravn, May 21, 2018
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  10. Ravn

    Ravn Senior Member (Voting Rights)

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    In the Otago Daily Times: Shedding light on an invisible illness by Jean Balchin

    Well written, as Jean's column always is, apart from a lack of consistency in terminology, a merry mix of CFS, ME and ME/CFS.

    Full article here: https://www.odt.co.nz/opinion/shedding-light-invisible-illness
     
    Ravn, May 24, 2018
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  11. Ravn

    Ravn Senior Member (Voting Rights)

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    Whatever is happening at the Otago Daily Times? They completely ignored ME awareness day but suddenly, this week, ME gets a lot of column space. First Jean Balchin's column a couple of days ago about her own recent diagnosis and now today a big feature in the business section, of all places.

    Unfortunately only one of the articles is online (see below). The paper edition also has the obligatory fact box of symptoms plus another article on Prof Tate's research group, covering the recent arrival of a Seahorse Analyser, a study looking at the effect of MitoQ on immune cell energy levels (that'll explain the business section placement I suppose), and a study looking at social issues for patients.

    Full article here: https://www.odt.co.nz/business/set-quest-treat-me
     
    Ravn, May 26, 2018
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  12. Helen

    Helen Senior Member (Voting Rights)

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    I´m very interested in Prof. Tate´s research. Is there a way for you to share parts of the article that you mention above? Unfortunately I couldn´t read the added page in your other thread as the letters were too blurred when I enlarged the text. Maybe I missed a trick to make it better. BTW, I´m glad to see that ME seems to get more attention in your area as well.
     
    Helen, May 26, 2018
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  13. Cohen

    Cohen Established Member

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    https://www.odt.co.nz/business/hope-antioxidant’s-effects-energy-production
     
    Cohen, May 26, 2018
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  14. Ravn

    Ravn Senior Member (Voting Rights)

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    Thanks @Cohen for posting that second ODT article. I couldn't find it when I was looking for it yesterday. Maybe they added it later. I'm sure the “Chronic symptoms” [sic] fact box wasn't there either when I last looked, but now it has appeared at the bottom of the 'Set on a quest to treat ME' article previously posted (https://www.odt.co.nz/business/set-quest-treat-me).

    @Helen - As for the earlier Star article, I appear to have deleted the email they sent me with the scan, sorry. You could try contacting them at circulation@alliedpress.co.nz. Maybe they can send you a better scan or a text file. They were very helpful to me at any rate. It's the 15 May edition, pages 22-23 you're after.
     
    Ravn, May 26, 2018
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  15. Hutan

    Hutan Moderator Staff Member

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    Hutan, Jun 17, 2018
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  16. Ravn

    Ravn Senior Member (Voting Rights)

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    From an announcement by the Community Health Council (CHC) - which covers the Southern District Health Board area, I don't know if other areas have similar initiatives.

    Not ME-specific but there may be an opportunity here for some input?

    Some of the stories can be seen here, all are short videos, around 2 minutes long https://www.southerndhb.govt.nz/pages/patient-stories/

    The videos are of the feel-good variety, all about how wonderful the healthcare received was, but some also include a little bit about what it's like to live with their respective conditions. I could be wrong but I doubt they'd want to put negative stories on. However, if there's anyone in the region who actually has a positive story and is willing to tell it, plus how hard it is to live with ME (all in 2 minutes!), maybe that could encourage some other health professionals to approach ME patients in a positive way, too?

    There's also this:
    Contact chc@southerndhb.govt.nz for more info or if you want to be involved as an advisor.

    Note for non-Kiwis: whānau is the Maori word for (extended) family.
     
    Ravn, Jun 18, 2018
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  17. Hutan

    Hutan Moderator Staff Member

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    You and ME: An Update on Myalgic Encephalomyelitis for Psychologists by Rose Silvester posted by @Indigophoton here.

     
    Hutan, Jun 30, 2018
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  18. Ravn

    Ravn Senior Member (Voting Rights)

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    Article in a small, local (I think, not my region) North Island newspaper: https://www.theweekendsun.co.nz/news/4395-burning-candle-at-both-ends.html
    Bit of a mixed bag, here's a sample:
    Pointing readers to this website for more information: https://ccisupport.org.nz/ which also seems a bit of a mixed bag, with some sensible information but giving a rather too optimistic impression of chances for recovery, possibly unintentionally. The expression "Towards Wellness Programme" is a little ambiguous.
    It's also not quite clear to me if they're a charity. Does anyone know them?
     
    Ravn, Jul 5, 2018
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  19. Daisybell

    Daisybell Moderator Staff Member

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    Location:
    New Zealand
    They’re in the Bay of Plenty.
    I’ve chosen not to join....like you, I have reservations about some of their information. They are a charity. Recently renamed chronic complex illness support - used to be ME/CFS Bay of Plenty.
    It makes me wary when the employee has ‘recovered’.....

    It would be my local support group.
     
    Daisybell, Jul 5, 2018
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  20. Hutan

    Hutan Moderator Staff Member

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    When I went to Tauranga for a Massey CPET study, I stayed across the road from the office of the CCI because I think initially the study's mobile CPET unit was going to be parked there. Anyway, I had time to fill in between the CPET tests so I called in to see this organisation, a bit hopeful that they might have some information about support for my son's education.

    The office is up a flight of stairs which wasn't a great start. I wasn't able to extract any useful information out of the person. The person was pleasant enough and gave me a brochure. The focus was definitely on being positive and heading towards recovery. I see they list anxiety and irritability as symptoms of Chronic Fatigue Syndrome. I did feel irritable by the time I left.

    Yes @Daisybell, if I lived near Tauranga, I don't think I'd be bothering with them. It's disappointing.
     
    Last edited: Jul 6, 2018
    Hutan, Jul 5, 2018
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