News from Aotearoa/New Zealand and the Pacific Islands

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

  1. Trish

    Trish Moderator Staff Member

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  2. Deanne NZ

    Deanne NZ Senior Member (Voting Rights)

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  3. forestglip

    forestglip Senior Member (Voting Rights)

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    The Press: "Young father with chronic fatigue desperate to get well for his family"

    "Tyrone Hauraki’s limbs feel like they have ropes tied around them.

    He’s exhausted every day. He has brain fog, and a tickle in his throat that does not go away. Bright lights hurt his eyes, conversations are tiring, and for long periods of time even part-time work has been impossible.

    For four years, the 28-year-old father of two has tried to get answers for his symptoms. No treatment has worked.

    His 4-year-old daughter Mila has only known a sick dad, not the vibrant, “life of the party” and “class clown” his friends knew before.

    Hauraki has been diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

    His diagnosis was a process of elimination, something he felt doctors often defaulted to if nothing else made sense. It’s not a diagnosis he completely accepts."

    "About four years ago, Hauraki was out for a run when his lungs started to burn. He was the fittest he had been, so it was unusual, he said.

    “By the time I got home something felt really wrong. The burning in my lungs stayed there all day. When I woke up in the morning it actually felt worse.”

    He developed a sore chest and the tickle in his throat. He went to his GP, who gave him antibiotics for a chest infection.

    When that didn’t work, he was given more antibiotics for a sinus infection. For over a year, he went back to the GP about every two weeks with the same symptoms.

    Nothing worked."

    "His family and friends fundraised $13,000 for a type of stem cell treatment, which Hauraki had last week.

    It is not yet known if it will have any effect.

    A haematology specialist doctor urged caution over pursuing stem cell treatment for chronic fatigue, citing a lack of research into its efficacy.

    There was no published case of using blood stem cell transplant for chronic fatigue, the doctor said.

    But Hauraki was willing to try anything, he said, as he just wants to get well for his family."
     
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  4. oldtimer

    oldtimer Senior Member (Voting Rights)

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    I haven't noticed any reports of stem cell research for ME. I barely know what it is except for its use after chemotherapy in lymphoma and leukaemia. What would be the rationale for it in ME?

    I wrote my usual letter about using 'chronic fatigue' in the headline.

    Edit: The headline has now been changed to include 'syndrome'. I even got a nice email to let me know :)
     
    Last edited: Jun 25, 2024
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  5. Ravn

    Ravn Senior Member (Voting Rights)

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    NZ research project seeking (anonymous) stories from people who have given up on seeking healthcare due to bad experiences due to biases against race, gender, disability etc (closes 1 August 24).

    Not ME specific so I don't think it needs its own thread. Just posting in case some members here have stories they want to share. I haven't looked at the project in detail so do your own due diligence first. A quick skim shows there are a couple of ME/CFS already

    Article about the project:
    https://theconversation.com/i-felt-...f-shame-stop-people-seeking-healthcare-231683

    Link to project itself:
    https://wahikorero.co.nz/projects/i-felt-too-whakama-to-go-to-the-doctor/
     
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  6. Hutan

    Hutan Moderator Staff Member

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  7. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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  8. Deanne NZ

    Deanne NZ Senior Member (Voting Rights)

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  9. RoseE

    RoseE Senior Member (Voting Rights)

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    Last edited: Jul 20, 2024
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  10. RoseE

    RoseE Senior Member (Voting Rights)

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  11. Dolphin

    Dolphin Senior Member (Voting Rights)

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  12. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Critical Reforms Needed For ME/CFS Patients In Aotearoa: Coalition Calls On HDC For Action
    https://www.scoop.co.nz/stories/GE2...otearoa-coalition-calls-on-hdc-for-action.htm

     
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  13. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    Grant Illingworth KC appointed as Commissioner to the NZ Covid-19 Royal Commission.

    https://www.youtube.com/watch?v=kknj6u1C04g




    "[My wife and I] experienced lockdown in almost privileged circumstances, but we experienced Covid in a way that affected me personally quite badly. I had a period of illness which I attribute to Long Covid."
     
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  14. Hutan

    Hutan Moderator Staff Member

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    Thanks for posting about Grant Illingworth, SNT.

    Dr Richard Webby was just on Radio New Zealand Sunday Morning
    The recording isn't up yet, but I will update the post when it is. (Link since updated)
    https://www.rnz.co.nz/news/covid-19/525469/covid-19-will-be-with-us-forever-flu-expert

    Professor Webby is part of the International Advisory Group of One Health Aotearoa, and has a WHO role
    The reason I'm posting about this is that Long Covid is briefly discussed as part of the conversation about Covid-19. The interviewer asked if there is any doubt about Long Covid not being psychological and Professor Webby was very definitive, no doubt at all, it's not psychological. He noted that SARS-CoV-2 is not the only disease that causes post-infection syndromes. Professor Webby and One Health Aotearoa are worth keeping in mind as possible collaborators - e.g. with Webby's WHO connection and One Health Aotearoa's capacity in health economics, epidemiology and more
     
    Last edited: Aug 17, 2024
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  15. Dolphin

    Dolphin Senior Member (Voting Rights)

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    ME Association
    ·

    New Zealand: Radio station run from CFS/ME sufferer’s bed
    "The 46-year-old creates a 90-minute show every few weeks full of gags, fun banter about television shows and movies, quotes and music centred on his favourite decades the 80s and 90s.
    The show plays across 50 stations throughout New Zealand, Australia, the United Kingdom, the United States, Ireland and even in the Caribbean, Chile and Cook Islands.
    #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #Radio

    https://www.nzherald.co.nz/bay-of-p...sme-sufferers-bed/YYW6KEQD3FB4RKYPDPFWTYQL2M/
     
  16. Daisybell

    Daisybell Senior Member (Voting Rights)

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  17. Hutan

    Hutan Moderator Staff Member

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    Thanks for posting @Daisybell. From the article:

     
  18. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    NZ Public Health Communication Centre — Long Covid: High economic burden justifies further preventive efforts
    Amanda Kvalsvig, John Kerr, Paula Lorgelly, Nick Wilson, Michael Baker

     
  19. Ravn

    Ravn Senior Member (Voting Rights)

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    Prof Tate is moving department. I'm somewhat relieved it's only a move. Otago University has been on a ruthless cost cutting mission for a while and I've been worried they'd be kicking him out altogether
    https://www.otago.ac.nz/news/newsro...stry-bids-farewell-to-highly-valued-academics

    Chatterjee's profile: https://www.otago.ac.nz/healthsciences/expertise/profile?id=1735

    Has published with Tate before:

    https://www.s4me.info/threads/prepr...le-in-me-cfs-helliwell-tate-et-al-2022.24771/

    https://www.s4me.info/threads/chang...emic-dysfunctions-helliwell-et-al-2020.17624/
     
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  20. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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