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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. Ravn

    Ravn Senior Member (Voting Rights)

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    @RoseE
    I know you don't have ME yourself, Rose, but even for a healthy person - do you ever sleep?!
    The amount of stuff you get done is simply astonishing. Thanks so much!
     
  2. Hutan

    Hutan Moderator Staff Member

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    Also on our list to update are
    • the Canterbury District Health Board HealthInfo pages for ME/CFS (supposed to be a patient-friendly patient-relevant version of the HealthPathway; currently really bad. )
    • the Canterbury District Health Board HealthPathway for ME/CFS for Allied Health Professionals (e.g. physios, occupational health therapists)
    Unfortunately the content not being publicly accessible is a permanent thing. As good as the whole HealthPathway system is in ensuring progress in medical practice, this lack of transparency with the wider community does seem to be an outdated aspect. There is an idea I think that patients should not know what specific symptoms and signs might trigger a referral or treatment. That said, if you are a registered medical professional e.g. a nurse, in the relevant region, you can access the HealthPathway system for that region. So it's hardly top secret information.

    Here's a thread that discussed HealthPathways more. I think our Canterbury (NZ) CFS Pathway can be accessed by health authorities using the system in Australia and the UK as well as in NZ.
     
    Last edited: Dec 7, 2019
    Chezboo, ukxmrv, rvallee and 5 others like this.
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  4. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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  5. rvallee

    rvallee Senior Member (Voting Rights)

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    We've had "things are changing for ME patients" for decades now. Still no change. Even in this article it basically reports how nothing has changed, how everything is clearly broken, yet includes the tired trope of "things are changing".

    I don't think we'll move past them until everything moves past everything. Too much confusion, too much sunk cost, too many mistakes that no one wants to own.
     
    Chezboo, ukxmrv and RoseE like this.
  6. Ravn

    Ravn Senior Member (Voting Rights)

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    Dr Vallings has written an editorial article titled "Chronic fatigue syndrome" for the Journal of Primary Health Care.

    Is it possible to give Dr Vallings an editor or a media advisor or some such person? She clearly puts a lot of well-intentioned work into her educational efforts - and I appreciate that - only I'm not convinced the results are as she intended.

    After reading this particular piece I feel like I've been whirled about and spat out again by a tornado, all dizzy and disoriented and unable to remember much of anything. I suspect any GP reading this would feel much the same.
    Full article here https://www.publish.csiro.au/hc/Fulltext/HCv11n4_ED2

    Journal of Primary Health Care 11(4) 295-299 https://doi.org/10.1071/HCv11n4_ED2
    Published: 18 December 2019
     
  7. Hutan

    Hutan Moderator Staff Member

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    Yes. I completely agree @Ravn that that is what is needed. Dr Vallings' intent is clearly good. She seems determined to convince her readers that there is proof that CFS/ME is a biomedical illness, but quoting great swathes of tiny unconvincing studies is not a very good way to do it.

    This is all she says about diagnostic criteria, not mentioning that Fukuda doesn't require PEM and ignoring the IOM 2015 Criteria which are probably the most useful in a clinical setting.

    There's good stuff, like this:
    But it's quite a grab bag of home remedies, finger-wagging motherly advice and unproven biomedical statements.
    I'm planning to write a letter to the journal.
     
  8. RoseE

    RoseE Senior Member (Voting Rights)

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    This research article in the Journal of The Royal New Zealand College of General Practitioners has just been brought to my attention...
    http://www.publish.csiro.au/HC/fulltext/HC19041

    A neuro-inflammatory model can explain the onset, symptoms and flare-ups of myalgic encephalomyelitis/chronic fatigue syndrome
    Angus Mackay 1
    + Author Affiliations
    Journal of Primary Health Care 11(4) 300-307 https://doi.org/10.1071/HC19041
    Published: 29 November 2019

    Discussion of this paper is continued here.
     
    Last edited by a moderator: Dec 20, 2019
  9. rvallee

    rvallee Senior Member (Voting Rights)

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    Interesting. Still curious how that would explain the myalgia, but then again there is probably a similarity with the flu and similar infections and why they also have muscle and joint plain. The pain is very unlike the soreness from exercising long-sedentary muscles, contrary to the confused BPS model.

    This is interesting:
    I can't say I have noticed that, especially as for many it seems to be simple cases of the flu and I've had a few minor infections with flu-like symptoms and they didn't particularly affect the illness. But the effect sure is similar. An accumulation threshold could be at play.
     
    RoseE likes this.
  10. RoseE

    RoseE Senior Member (Voting Rights)

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    This is an opportunity to raise awareness of the issues in accessing education and support for students at NCEA level with ME and other disabilities. n.b. There are an estimated 3,000 young people with ME in NZ.

    Individuals can apply for a role on the "Disability & Learning Support NCEA Panel" by sending in a CV by 5th February 2020.

    You will need to be prepared and able to commit to 4 days panel work during 2020. Most likely difficult for someone ill with ME.

    The Ministry of Education says...

    "For the Disability & Learning Support NCEA Panel, we’re looking for people that can demonstrate:
    + Expertise in disability and/or learning support issues in senior secondary schooling or similar context, or lived experience as a disabled person in education
    + An ability to recognise and acknowledge the diverse needs of a wide variety of different disabled young people and/or people with learning support needs
    + An awareness of the particular issues in NCEA affecting key groups of disabled young people and young people with learning support needs."

    For more information... https://conversation.education.govt.nz/conversations/ncea-review/ncea-panels-eoi/

    Please shoulder tap someone if you know anyone with some education experience and/or some lived (self or child) experience that could contribute in this way.
     
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  11. RoseE

    RoseE Senior Member (Voting Rights)

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    Last edited by a moderator: Dec 31, 2019
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  12. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Happy New Year to all those in NZ and Aus etc.
     
  13. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    I was having a look online for how issues around MESH injury were treated by different countries and came across this in NZ

    Diana Unwin Chair in Restorative Justice
    Victoria University of Wellington

    The Collaborating Centre for Safe Healthcare, Faculty of Health, Victoria
    University of Wellington partnered with the Chair to provide expertise in safe healthcare.

    Has anyone approached this group or the Restorative Justice Chair regarding ME issues in the past?

    (here is their MESH document)

    https://static1.squarespace.com/sta...na+Unwin+Chair+in+Restorative+Justice+(1).pdf
     
    Hutan and Esther12 like this.
  14. RoseE

    RoseE Senior Member (Voting Rights)

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    Hadn't heard about either the chair role or the group. Thanks!
    Definitely will be good to investigate.
     
    ukxmrv likes this.

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