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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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    Articles in the New Zealand Herald online by journalist Natalie Akoorie. (There's a paywall after the first paragraph or so)

    https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12237579
    [​IMG]
    Children with ME/CFS get left behind in New Zealand's education system - psychologist - NZ Herald

    A debilitating chronic illness that affects 20,000 New Zealanders is likely to be causing large numbers of school absenteeism in teenagers. Wellington psychologist Rose Silvester, whose son has ...



    https://www.nzherald.co.nz/health/news/article.cfm?c_id=204&objectid=12233752
    [​IMG]
    Debate rages on chronic illness ME: Research derailed by idea it is psychological condition

    It's estimated 20,000 New Zealanders are 'missing ' because of the disease.
     
  2. Ravn

    Ravn Senior Member (Voting Rights)

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    You beat me to it @Hutan, posting the two Herald pieces. Does anyone here have a NZ Herald sub and is able to read them?

    FB wisdom has it that tomorrow's print edition will have shorter versions of one or both. If that's correct I will be able to access those via my library PressReader access but infuriatingly I can't get the online edition that way.
     
  3. Eagles

    Eagles Senior Member (Voting Rights)

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    Merged thread

    Radio New Zealand: Chronic fatigue syndrome blood test - new hope for sufferers?


    Radio interview with Dr Ron Davis

    https://www.rnz.co.nz/national/prog...ue-syndrome-blood-test-new-hope-for-sufferers

    Pioneering geneticist Dr Ron Davis with researchers at Stanford University thinks he may have discovered a blood test that can flag chronic fatigue syndrome (CFYS) / Myalgic encephalomyelitis (ME).

    If so it would be the breakthrough that sufferers have been seeking for decades - proof that it exists. While not much is known about CFS many sufferers complain that their condition is often regarded as imaginary, in part due to there being no test for it. Currently a diagnosis is based on the appearance of symptoms like extreme exhaustion, sensitivity to light and unexplained pain.

    In New Zealand it's estimated that there are around 20 thousand people with chronic fatigue syndrome. Dr Ron Davis is the Director of the Stanford Genome Technology Center with a personal reason to find a cure as his 35 year old son Whitney suffers from a debilitating form of the disease.

    Interview - https://www.rnz.co.nz/audio/player?audio_id=2018701196
     
    Last edited by a moderator: Jun 25, 2019
  4. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Glad to see this interview, especially in light of the current BPS propoganda in NZ.

    Perhaps a subtle message in the write up about the interview that Whitney Dafoe suffers from a "debilitating form of the disease". IMHO, Whitney suffers from a very severe form of the disease, but that does not mean that less severe forms are not debilitating. People with mild, moderate and severe forms of ME are also debilitated. It would be a relief indeed if more journalists got things right about ME.
     
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  5. Ravn

    Ravn Senior Member (Voting Rights)

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    That PressReader App must be the least user-friendly app ever developed to read anything!

    But I did manage to read the articles - the shortened print versions, though one of them is still quite long - and both paint an excellent picture of how severe and debilitating ME can be, and of all the hurdles, including patient-blaming, PwME and carers face in getting support of any kind.

    Especially the longer article is a wide-ranging piece and definitely worth reading.

    I'm not entirely sure people who've never heard of PACE would quite understand what that's all about, just based on the articles, but it's probably asking too much to explain PACE in a few sentences. I think the message that it was bad science, and that current treatments are based on that bad science, probably gets through and that's the main thing.

    I found Philida Bunkle's comments particularly interesting as she placed the hurdles faced by PwME in a wider context: "Chronic illness is not seen as valid, she said. 'The assumption of the world we live in is that your health is your responsibility, your fault. You fix it.'"

    Special thanks to Julie Marshall who courageouly talks about her personal challenges. Thanks, too, to all the other interviewees, Rose Sylvester, Arran Culver, Carolyn Wilshire and Phillida Bunkle (I hope I haven't forgotten anyone) for their thoughtful analysis of the situation, and to the journalist, Natalie, who must have done a serious crash course on ME (unless she had prior knowledge).

    One minor quibble though. The bottom bar of the printed version gives the usual advice on how to help manage ME: reduce stress, and eat and sleep well. Drives me nuts! Sure, technically it's correct. You probably will feel worse if you eat and sleep badly and are under a lot of stress. BUT. The general public, health professionals included, will invariably interpret this as meaning your ME can actually get better if you don't stress, and eat and sleep properly. And that's just BS. Also, as the article itself demonstrates very clearly, just having ME and dealing with all the disbelief and with all the hurdles our so-called support services put in your way, well, all that pretty much guarantees stress. And it's not like many of us sleep badly on purpose. Arrgh!

    ETA: If anyone wants to track down the print version of the articles, that's the NZ Herald edition of 26 June 2019, page A5 for the shorter school absence article and pages A14-15 for the longer feature article.
     
    Last edited: Jun 26, 2019
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Location:
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    Fiona Godlee will be in NZ later this year

    "
    Getting Better with Evidence
    10 December 2019, New Zealand

    Details
    8:00 am, December 10, 2019 — 5:30 pm, December 10, 2019

    Venue
    University of Auckland (Grafton Campus)"
    https://www.cebm.net/events/getting...xperiences-of-putting-evidence-into-practice/
     
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  7. Annamaria

    Annamaria Senior Member (Voting Rights)

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  8. chrisb

    chrisb Senior Member (Voting Rights)

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    I think the evidence is that she is not getting better, at least at responding appropriately to matters which should concern her.
     
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  9. Subtropical Island

    Subtropical Island Senior Member (Voting Rights)

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    Why is every apparently good article behind a paywall and all the abusive junk free for all?

    [Economics, yup. But it doesn’t stop my frustration]

    Thanks for the commentary/summary!
    Helps to know there’s some information out there that doesn’t suggest that what I really need is the Lightning Process.

    [edited to remove unnecessary personal detail]
     
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  10. Amw66

    Amw66 Senior Member (Voting Rights)

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    One of articles accessible via tweet
     
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  11. Ravn

    Ravn Senior Member (Voting Rights)

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    The tweet directs to the Stuff article by Dr Cathy Stephenson from earlier in the month, not to the two Herald articles.
    Isn't it great to have enough good articles all at once to potentially cause confusion :)
     
  12. Amw66

    Amw66 Senior Member (Voting Rights)

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    Thanks for correction. Great for advocacy- just need to keep the momentum going!
     
  13. Ravn

    Ravn Senior Member (Voting Rights)

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  14. RoseE

    RoseE Senior Member (Voting Rights)

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    I don't think Julie Marshall's video interview for the NZ Herald has been shared here yet? It was published on 4th July.

    This is a really good short 2 min 41 sec interview with Julie talking about the experience of having ME / #MyalgicEncephalomyelitis.
    Note: The date under the title on the Herald page is incorrect. The interview was recorded in May 2019, when the previously shared articles were being prepared. The video is tagged as being 'Premium' content, but is not behind the paywall.

    There are quite a few good soundbites from Julie, including this one... "We are not people who are defined by tiredness. We are people who are sick."
    https://www.nzherald.co.nz/national-video/news/video.cfm?c_id=1503075&gal_cid=1503075&gallery_id=207291
     
  15. Ravn

    Ravn Senior Member (Voting Rights)

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    Someone eagle-eyed in the ME Awareness NZ FB group spotted this Stuff opinion piece written by a person with fibro and ME. Mostly about how low benefits are.

    https://www.stuff.co.nz/national/11...fits-are-until-theyre-forced-to-apply-for-one

    Note also the button at the bottom "View this Assignment". It leads to a page called "Share your news and views". https://www.stuff.co.nz/stuff-nation/assignments/90979605

     
  16. RoseE

    RoseE Senior Member (Voting Rights)

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    Just came across the NZ Health Survey.
    https://www.health.govt.nz/nz-healt...and-surveys/surveys/new-zealand-health-survey

    It looks like it could be a vehicle for getting prevalence figures of ME and CFS in NZ. Would have to advocate for a question to be included in the rotating module (not core) question set I expect.

    The current guidelines for topics are defined here...
    https://www.health.govt.nz/system/f...bjectives-and-topic-areas-aug09-nov2010_0.pdf

    Current Stakeholders (users?) of the Survey have been asked for feedback by 24th July for both the Child and Adult survey. Not sure if the current consultation process is something that ME Awareness NZ can submit on. But we will investigate and try to do so.
    https://consult.health.govt.nz/health-survey/adult-nzhs-feedback/
    https://consult.health.govt.nz/health-survey/child-nzhs-feedback/
     
  17. Hutan

    Hutan Moderator Staff Member

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    Last edited: Jul 19, 2019
  18. RoseE

    RoseE Senior Member (Voting Rights)

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    for everyone's info, I was alerted to this survey from an email sent by https://www.healthychristchurch.org.nz/
    They cover off MOH surveys, give advice on submissions, etc. Probably useful not just for people in Canterbury, NZ.
     
  19. Ravn

    Ravn Senior Member (Voting Rights)

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    Currently open: online survey, confidential, 35 questions, unclear if they consider chronic illness a disability.

    I filled it in regardless in the - probably vain - hope somebody will take note that ME can be as debilitating as a more "traditional" disability.

    http://www.ombudsman.parliament.nz/newsroom/item/invitation-to-disability-rights-hui
     
  20. theJOYdecision

    theJOYdecision Senior Member (Voting Rights)

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    I’ve just become aware there is some research happening through Massey Uni regarding the experiences of family and friends of pwME. Lead researcher is Dr Don Baken. I don’t know much about it. I don’t know when the window of data collection will close, etc. I am aware Baken has spoken out about the abysmal quality of life of pwME, the need for advocacy and better public awareness. And though he’s from the school of Psychology, he sees the illness as biological.
    https://massey.au1.qualtrics.com/jf...MBc8WrxYeV6zFJbUBuw0cf33FsQhS4boBL8ALiLP56ve8
     
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