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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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Page 22 of 48
  1. Subtropical Island

    Subtropical Island Senior Member (Voting Rights)

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    wasn’t able to make it. How’d it go?
     
    Subtropical Island, Oct 10, 2020
    #421
    MEMarge likes this.
  2. Ravn

    Ravn Senior Member (Voting Rights)

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    The talk is now available on Youtube (haven't watched it yet).

    https://www.youtube.com/watch?v=qPI576KVgV4






    The discussion about this video continues here:
    New Zealand Video: Exercise and ME/CFS, 2020, Lyn Hodges
     
    Last edited by a moderator: Oct 14, 2020
    Ravn, Oct 13, 2020
    #422
    RoseE, Subtropical Island, Hutan and 3 others like this.
  3. RoseE

    RoseE Senior Member (Voting Rights)

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    Some good news... The Massey University Foundation has set up an option on their donations page to allow people to donate to Dr Lynette Hodges research into ME, PEM and exercise.

    Go to https://foundation.massey.ac.nz/donate-online
    To donate to Dr Hodges work – in the drop down for 'Select Fund' click on ‘Dr Hodge’s ME Research’.
    You will receive a tax receipt by email instantly if you choose to give online.
     
    RoseE, Oct 28, 2020
    #423
    ME/CFS Skeptic, Amw66, mango and 12 others like this.
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    The 2020 Brain Health Research Centre Lecture
    Emeritus Professor Warren Tate will present the 2020 BHRC Lecture, entitled "Understanding the biological basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and its sudden increase in public profile with COVID-19"

    Monday, 23 November 2020
    Time 2:00pm - 3:00pm
    Audience Public,All University,Alumni,Staff,Postgraduate students
    https://www.otago.ac.nz/news/events/otago746991.html

    Mod note: a thread has been made for this lecture here:
    NZ: The 2020 Brain Health Research Centre Lecture - Professor Warren Tate - 23 November 2020
     
    Last edited by a moderator: Dec 11, 2020
    Sly Saint, Oct 29, 2020
    #424
    MEMarge, Subtropical Island, mango and 12 others like this.
  5. Hutan

    Hutan Moderator Staff Member

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    Hutan, Nov 6, 2020
    #425
    MEMarge, Subtropical Island, cfsandmore and 5 others like this.
  6. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Nov 24, 2020
    #426
    MEMarge, Ravn, Subtropical Island and 4 others like this.
  7. Andy

    Andy Committee Member

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    Andy, Nov 27, 2020
    #427
    Woolie, cfsandmore, Subtropical Island and 3 others like this.
  8. RoseE

    RoseE Senior Member (Voting Rights)

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    RoseE, Dec 9, 2020
    #428
    John Mac, Ravn, Chezboo and 2 others like this.
  9. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Has anyone watched this? A concise summary would be much appreciated.
     
    Snow Leopard, Dec 9, 2020
    #429
    Subtropical Island and Ravn like this.
  10. Ravn

    Ravn Senior Member (Voting Rights)

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    Mostly about validating ME.

    Part of it was Ritchie (former league star, ANZMES ambassador or something in that line) telling his story. 12 years ill, well the last 4 years. Explained how he was affected and how there was no help for him at the time. A bit too much emphasis on healthy living and positive thinking for my liking but in fairness it was in the sense of looking after yourself while ill so you don't feel even worse than you already do, not in any way curative, but I fear that sort of nuance may have bypassed most Breakfast viewers.

    Prof. Tate's bit would have gone straight over the head of most viewers, too. He briefly discussed his team's recent two papers, one on mitochondrial function the other on epigenetic changes. Nothing new in there for us. Hopefully it left the general impression that ME should be taken seriously and the underlying biochemistry studied.

    He was clear that there was no immediate clinical applicability beyond validating patient experience but used Ritchie's recovery/remission as an example that ME should be reversible while stressing that Ritchie is the exception and 95% don't recover.

    To further confuse the poor viewers the presenter kept talking about Chronic Fatigue Syndrome and Prof. Tate about ME with neither explaining the discrepancy.

    In short, awareness raising as much as anything.
     
    Ravn, Dec 10, 2020
    #430
    MEMarge, Joh, mango and 10 others like this.
  11. Hutan

    Hutan Moderator Staff Member

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    There's going to be an item on 'Chronic Fatigue Syndrome' on Radio New Zealand in the next hour or so. It was introduced as 'Chronic Fatigue Syndrome has been thought of as being all in the mind, but now some University of Otago researchers have proved that it is very real'.
     
    Last edited: Dec 10, 2020
    Hutan, Dec 10, 2020
    #431
    Chezboo, cfsandmore, John Mac and 5 others like this.
  12. Hutan

    Hutan Moderator Staff Member

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    Radio New Zealand item:
    Host of the show called 'The Panel' introduced the item as 'CFS' and said it's not psychosomatic.

    Warren Tate spoke - mentioned that it typically follows an infectious disease, mentioned that people infected with Covid-19 are developing the symptoms.

    He referred to ME/CFS, mentioned his daughter who got it when she was 14, and still has it 30 years later. He talked about, when she first got it, how she could only walk for five or so steps and then would have to lie down and rest.

    In response to a question about diagnostic tests, Warren said that his team have piloted a test that shows promise. He said that a scientist in the US has developed a test based on electrical impedance in serum, but there is no test based on biological molecules.

    He then talked about ME. Stigma was mentioned, 'even today people can go to their health practitioner and not have their illness validated
    He talked about an acute phase - when people are often bedbound - for 3 or 4 years, then a chronic phase. (That's the first I have heard of those phases, it doesn't match my family's experience.)

    In response to feedback from listeners, the host asked him to explain what ME is. Warren explained and said that CFS originated in the US and is not a favoured term, so now a compromise term, ME/CFS is used. (Even so, the host still called the illness CFS at the end).

    One of the panel members said that a young member of their team had got ME/CFS, and he had been terribly sick. He had been in a flatting situation, and his work colleagues had taken him breakfast, lunch and dinner because he was so sick.

    The other panel member said, just after the item, ' that was really enlightening, I had no idea how serious it was'. And the first panel member chimed back in, reiterating how bad it is. The host read out some responses from listeners, including one from a woman whose husband is now in a wheelchair as a result of ME/CFS.

    So, a few things (the technical things) I'd quibble with, but in terms of awareness raising, it seemed to do the job very well.
     
    Last edited: Dec 10, 2020
    Hutan, Dec 10, 2020
    #432
    MEMarge, Woolie, ahimsa and 16 others like this.
  13. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Sigh.
    When will the media learn how inappropriate this is?
     
    Snow Leopard, Dec 10, 2020
    #433
    ahimsa, glennthefrog, Chezboo and 5 others like this.
  14. Ravn

    Ravn Senior Member (Voting Rights)

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    After explaining where the terms ME and CFS had originated Prof Tate actually said, with emphasis, that patients hated the CFS one because it minimised the disease. Doubly disappointing - disrespectful one could argue - that the host continued using CFS after that.

    Otherwise it was a pretty good interview though, now available here:

    https://www.rnz.co.nz/national/prog...34/chronic-fatigue-is-not-psychosomatic-study
     
    Ravn, Dec 10, 2020
    #434
    MEMarge, Woolie, Joh and 14 others like this.
  15. RoseE

    RoseE Senior Member (Voting Rights)

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    RoseE, Dec 10, 2020
    #435
    Woolie, Chezboo, Mike Dean and 3 others like this.
  16. John Mac

    John Mac Senior Member (Voting Rights)

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    John Mac, Dec 10, 2020
    #436
    Woolie, Mike Dean, Ravn and 4 others like this.
  17. RoseE

    RoseE Senior Member (Voting Rights)

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    RoseE, Dec 10, 2020
    #437
    Amw66, Woolie, Chezboo and 3 others like this.
  18. RoseE

    RoseE Senior Member (Voting Rights)

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    RoseE, Dec 11, 2020
    #438
    Woolie, Chezboo, cfsandmore and 4 others like this.
  19. Ravn

    Ravn Senior Member (Voting Rights)

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    The man appears to have achieved a state of omnipresence. Here's yet another article, this one a little bit different from the others which were basically a direct copy-paste of a University of Otago press release. Also has a slightly cringe-making, if largely harmless, American video inserted.

    https://www.stuff.co.nz/life-style/...chronic-fatigue-syndrome-is-not-psychosomatic

    All that publicity is good and I haven't got any major issues with any of the content but hmm, not really sure about the wisdom of the strategy here. Clearly the intention is to give the spectre of psychosomatics a well-deserved and long overdue knock-out blow but, tactics, people, tactics. All those headlines shouting 'Chronic Fatigue Syndrome' and launching straight into the psychosomatic debate - if you really want to activate every prejudice a reader might harbour before they even start reading, that's the way to do it. And once you've so forcefully reminded them of their prejudices it's much more difficult to get them to change their views, no matter how good your argument.

    Why not structure the same content something like this:

    {clickbait for a headline} Scientist father working to solve daughter's disease

    {emotional hook into story} When daughter fell severely ill with Myalgic Encephalomyelitis and suffered [insert a few bad symptoms] no help could be found so her scientist father set out to find a solution.

    {dazzle reader with science, do not mention psych-anything here} Now his studies have found the following biological/epigenetic/molecular ...

    {later in the article acknowledge psych history but immediately drown it out with 'we know better now'} Funding was hard to come by due to lack of knowledge leading to the disease being misclassified as psychosomatic and renamed as CFS, a name which is rejected by patients as not reflecting their disease which ... [explain key symptoms, esp. PEM & severity]

    {conclude without any more mention of psych-anything, leave the reader with a last impression of the need for biomedical research} This research has contributed to a better understanding of ME and may eventually help with finding effective treatments or even a cure but more funding is needed to continue the work.
     
    Ravn, Dec 11, 2020
    #439
    Woolie, mango, Chezboo and 10 others like this.
  20. RoseE

    RoseE Senior Member (Voting Rights)

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    Perhaps we can get you /people to write press releases for future NZ research @Ravn ? And get the story improved.
     
    RoseE, Dec 11, 2020
    #440
    mango likes this.
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