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News from Aotearoa/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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    We've created a new thread in Resources for this excellent webinar which had input from @Ravn, and moved posts about it to that thread

    Post-exertional Malaise in ME/CFS - Webinar for Health Professionals
     
    Hutan, Jun 28, 2023
    #841
    Amw66, Arvo, Midnattsol and 7 others like this.
  2. Midnattsol

    Midnattsol Moderator Staff Member

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    That would indeed be me, I'd be happy to be connected to the gastroenterologist dietician :)
     
    Midnattsol, Jun 30, 2023
    #842
    mango, Amw66, Arvo and 9 others like this.
  3. Hutan

    Hutan Moderator Staff Member

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    Hutan, Jul 3, 2023
    #843
    RoseE and Trish like this.
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    don't know if this petition has been posted
    Improve the Education of ME/CFS (chronic fatigue) within medical schools in NZ

    How can you ask med schools to get it right when you keep calling it 'chronic fatigue'.

    Similarly with a lot of the content eg

    https://www.change.org/p/improve-th...urce_location=petition_footer&grid_position=9
     
    Sly Saint, Jul 5, 2023
    #844
    Hutan, Chezboo, Ravn and 2 others like this.
  5. Ravn

    Ravn Senior Member (Voting Rights)

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    My third-hand information is that this is the project of an individual who decided off their own bat they wanted to raise awareness about the medical education problem. I have a dim memory that somebody was going to contact them about amending some of the more unfortunately phrased parts but I'm not sure if that's happened or if it's even possible to make changes after posting a petition on Change.org, especially after people have already signed. Maybe adding an update could help clarify some of the issues, including who the petition is going to be presented to. The problem the petition is trying to address is very real
     
    Ravn, Jul 6, 2023
    #845
    Hutan, Chezboo, Sean and 3 others like this.
  6. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    I think that this person may have come from a Long Covid group
     
    ukxmrv, Jul 6, 2023
    #846
    Hutan likes this.
  7. CRG

    CRG Senior Member (Voting Rights)

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    The EU and New Zealand sign an agreement for the participation of New Zealand in European programmes like Horizon Europe

    The European Union and New Zealand have today signed an agreement for the participation of New Zealand in EU Programmes. The agreement creates a long-lasting legal framework that regulates the terms and conditions for New Zealand’s participation in European programmes, including its involvement in the governance structures and its financial contribution. The agreement opens the doors to New Zealand’s participation in the framework programme for research and innovation Horizon Europe (2021-2027).

    Diana Morant Ripoll, Spanish Minister for Science and Innovation

    New Zealand and the European Union have a long history of cooperation in the field of research. With this agreement we want to make a step forward to support our research and innovation communities and our respective economic sectors, but also to contribute to science progress in areas that matter to the whole planet.
    Diana Morant Ripoll, Spanish Minister for Science and Innovation

    New Zealand and the EU will cooperate in research projects related to climate change and carbon-neutrality but also in other areas such as big data, precision agriculture, sustainable energy, earthquake research and industrial innovation.

    The agreement is expected to boost bilateral cooperation in research and innovation. The EU is New Zealand’s most significant regional science and innovation partner, with more than half of New Zealand’s researchers regularly engaged in active collaborations with EU partners. Around 4 000 businesses in New Zealand perform research and development activities, with many more engaging in innovation. New Zealand has 8 Universities, 7 Crown Research Institutes, and several independent research organisations.

    More at: https://www.consilium.europa.eu/en/...d-in-european-programmes-like-horizon-europe/

    Relevance of Horizon to ME/CFS - https://www.s4me.info/threads/eu-news-from-the-european-me-coalition-emec.21253/#post-458576
     
    CRG, Jul 10, 2023
    #847
    RoseE, ukxmrv, Hutan and 10 others like this.
  8. Wyva

    Wyva Senior Member (Voting Rights)

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    Congrats to New Zealand!

    On a side note, we have been basically kicked out of these research funds recently (because in the case of most universities, how they were run financially has been restructured and not in a good way). Not that anyone was doing serious biomedical research into ME/CFS here, so in that particular respect it is not really a lost opportunity to lose those research funds.

    Good for NZ though!
     
    Wyva, Jul 10, 2023
    #848
    ukxmrv, Hutan, Trish and 5 others like this.
  9. Hutan

    Hutan Moderator Staff Member

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    Mānawatia a Matariki

    Hoping our Aotearoa New Zealand members are keeping warm and have loved ones near.

    Screen Shot 2023-07-14 at 7.31.59 am.png
     
    Last edited: Jul 13, 2023
    Hutan, Jul 13, 2023
    #849
    mango, Daisybell, Ebb Tide and 6 others like this.
  10. RoseE

    RoseE Senior Member (Voting Rights)

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    From a member of M.E. Awareness NZ...
    Upcoming interview on Long Covid tomorrow (Saturday, 21st July 2023) - Danny Altmann is speaking with Kim Hill on RNZ. At 9:05 am Saturday.
    Altmann is a leading immunologist and co-wrote the Long Covid handbook with Gez Medinger. He will likely also talk about the overlap with ME and other post-viral conditions.
    (his recent research review includes commentary on ME - and the conclusion is esp powerful, on the huge impact of these conditions:
    https://www.nature.com/articles/s41577-023-00904-7 )

    If you are able and want to, pls listen live and text in your Qs and comments - free text to 2101
    (and it's ideal to text during the show, in the first half)

    Here's the link to the show, will be updated with the details for this week later on Friday
    https://www.rnz.co.nz/national/programmes/saturday
     
    RoseE, Jul 21, 2023
    #850
    rvallee, ukxmrv, Kalliope and 4 others like this.
  11. Hutan

    Hutan Moderator Staff Member

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    Hutan, Jul 21, 2023
    #851
    rvallee, Kalliope, Ariel and 4 others like this.
  12. Hutan

    Hutan Moderator Staff Member

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    I thought Altmann was good. He came across as credible and measured, and I think he helped the causes of Long Covid, and ME/CFS.

    He didn't answer a question about post-exertional malaise well. He explained it was different from just tiredness after exertion, that young people who were very previously active can now do some activity and then be wiped out for the weekend. He said that people don't appreciate the scale of the impact, but didn't give a sense of what it is like to have post-exertional malaise. He suggested that PEM might be due to impaired gas exchange across the lungs. That, and an earlier emphasis on the symptoms of coughing and breathlessness painted a particular picture of Long Covid that I think is only part of the story.

    In response to a question about whether other viruses could have been doing this too, and it's just that people weren't paying attention to those, Altmann replied very briefly that 'no', Covid -19 is unusual, it is particularly nasty. The impact of that was to implicitly imply that Long Covid is a unique thing. He did pull things back a bit later, talking about ME/CFS, and that 'symptoms massively overlap' and that fact that ME/CFS research wasn't funded. He also talked about SARS-CoV-1, noting that the symptoms were almost the same, and how the people affected with post-viral impacts from that pathogen had remained significantly affected, unable to return to their previous jobs.

    He gave good answers about treatments (there are none that it is worth risking taking right now, but people are working on things, and there are tools in the immunology toolbox that may be useful).

    I don't think there was anything said that we here don't already know e.g. severity of infection doesn't really relate to Long Covid incidence - plenty of people with a mild infection end up with LC. You can get LC on a re-infection, but previous infections or vaccinations seem to lower risk.

    A listener texted in 'I feel like collateral damage'. Altmann commented that he feels outrage for people with LC.

    The interview closed with a comment about how Gez Medinger is doing. Altmann noted that previously Gez had been a dedicated marathon runner, and now, when he is doing publicity events for the Long Covid Handbook etc, he will take breaks to sit somewhere quiet in order to get through it. Altmann suggests that Kim, the presenter, should get him on the programme.

    So, yes, helpful and pretty accurate. I think there is scope for conveying the potential seriousness of the condition at the individual level a bit better, but perhaps interviews with people with LC and their carers can do that. One brief interview can't cover everything. I don't think the consequences of the condition at the societal level were rammed home either, but again, I think that might be something that needs to come from layers of interviews. The foundations were laid. Possibly people will take away from the interview 'oh well, the researchers are on it, and it sounds as though treatments aren't far away'. And that might be true, I hope so.

    Here's a link to the page for the morning's programme:
    https://www.rnz.co.nz/national/programmes/saturday
    The link to the interview isn't up yet.
     
    Hutan, Jul 21, 2023
    #852
    Wyva, RoseE, RedFox and 13 others like this.
  13. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    Agree @Hutan, I thought it was a good foundation. Yes, I also wished the PEM question had been addressed more comprehensively, regarding wide-ranging symptom exacerbation not just fatigue - albeit much more severe than its healthy equivalent.

    It was "good" to hear the experience from Toronto SARS1 as there has been too much dancing around LC not being ME. That has been both unhelpful and helpful (the latter in terms of biomedical research into this 'totally new disease'). Eg the local FB support group frequently has newer people inquiring whether anyone else has these "weird symptoms" (typical core ME). Much resistance to the idea that LC is (largely) ME and it's unpleasant to see the shocked, horrified reactions of people finally realising that that's what this is - including a formal diagnosis - and that this quite possibly won't go away in a few months - or indeed ever.
     
    SNT Gatchaman, Jul 21, 2023
    #853
    Wyva, Michelle, livinglighter and 8 others like this.
  14. Trish

    Trish Moderator Staff Member

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    Trish, Jul 22, 2023
    #854
    RoseE, Hutan and Kalliope like this.
  15. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    'Gold standard to test for viruses lurking in the body is with a gut biopsy'. Is that true? We have heard for decades the debate on ME onset and viruses. I can't remember any if the doctors interested in the Herpes family and ME talking about this or autopsies of people with ME. Does it sound familiar to anyone?
     
    ukxmrv, Jul 22, 2023
    #855
    Michelle likes this.
  16. Hutan

    Hutan Moderator Staff Member

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    Hutan, Jul 22, 2023
    #856
    SNT Gatchaman, Sean, Trish and 1 other person like this.
  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Rest Assured Respite Trust
    About the event Rest Assured Respite Trust
    Dr Ros Vallings - speaking on ME/CFS diagnosis, management, current research
    HAPORI WHĀNUI COMMUNITY AWARENESS
    SESSIONS
    ON ME/CFS AND FM*
    *MYALGIC ENCEPHALOMYELITIS/ CHRONIC FATIGUE SYNDROME AND FIBROMYALGIA

    https://allevents.in/auckland/rest-assured-respite-trust/200024976328808
     
    Sly Saint, Jul 23, 2023
    #857
    RedFox, Hutan and Trish like this.
  18. Trish

    Trish Moderator Staff Member

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    Looks like it's an in person event, not online.
     
    Trish, Jul 23, 2023
    #858
    RedFox likes this.
  19. Ravn

    Ravn Senior Member (Voting Rights)

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    Just stumbled across the registry website:
    https://www.lcregistry.auckland.ac.nz/

    As per the original reporting, the immediate study outcomes are all about the impact LC has on people's QoL. However, it looks like they're hoping the registry will be used by other researchers to look into treatment effects as well :emoji_fingers_crossed:
     
    Ravn, Jul 29, 2023
    #859
    RedFox, Sean, Dolphin and 2 others like this.
  20. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    ‘A shell of my former self’: Broadcast journalist Joy Reid’s battle with long Covid

     
    SNT Gatchaman, Aug 1, 2023
    #860
    Ravn, Hutan, Sean and 4 others like this.
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