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Australia: News from Emerge Australia

Discussion in 'News from organisations' started by Andy, Jul 17, 2018.

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  1. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Nov 27, 2020
    #21
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  2. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Nov 27, 2020
    #22
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  3. Andy

    Andy Committee Member

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    Andy, Mar 19, 2021
    #23
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  4. Hutan

    Hutan Moderator Staff Member

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    It looks very good - there's a lot in there. Key aims include getting good guidelines and ongoing efforts on research (including the biobank) and education.

    Some initial responses:

    I note that there is an aim to serve every Australian. I'd like to see some research into the prevalence of ME/CFS in indigenous Australian populations. Emerge might be able to secure some funding for that - there might be funding pools specific to those populations - and could work with indigenous health researchers already working successfully in their communities. I think it's an area where very little has been done. There could be interesting similarities and differences. The act of doing the research could have a big impact on Emerge's education aim too.

    I didn't see a mention of Long Covid. I would have thought a key aim for ME/CFS charities over the next 3 years will be to make the most of the visibility of post-viral syndromes created by Long Covid and ensure equality of care for both Long Covid and ME/CFS. I know Australia won't have many cases, but I still would have thought Emerge could and should be positioning itself as the organisation to go to to get reliable information about Long Covid.

    The aim to create a centre of clinical expertise is a challenging one. I imagine it might be hard to not get drawn in to providing care that isn't evidence based if there are partnerships with some existing 'ME/CFS experts'. But, if starting from scratch, the service might end up alienating those ME/CFS specialist clinicians and the patients who support them, and fracture the ME/CFS community. Yeah, a pretty challenging task. Perhaps Katherine Rowe would be a good person to work with?

    I'm glad to see a stated ambition of working to achieve a unified voice for Australian and NZ ME/CFS organisations. Personally I'd like to see Emerge's territory covering New Zealand - there are Australian states with bigger populations than NZ has, and medical colleges typically cover both countries. Economies of scale would make that a good move and ANZMES here is virtually dead. (Although the Emerge name would be a problem - Emerge Aotearoa is a provider of mental health services). I've always wondered about 'Emerge' as a name for an ME/CFS charity - it sounds a bit directive, as in 'Get off the couch and out of your home, and engage with society!' The Australian MS charity is MS Australia - it's immediately obvious what they are about and where they operate, there's no separate step needed to explain what the charity is about.
     
    Hutan, Mar 19, 2021
    #24
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  5. Andy

    Andy Committee Member

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    Research Interview: Professor Ken Walder

    Australia’s National Health and Medical Research Council (NHMRC) last year allocated $3.3 million for ME/CFS research. That money was split three ways, and a third of it went to a man named Ken Walder.
    ....
    “My motivation is around understanding metabolism,” Walder says.

    Previously, Walder worked in diabetes and obesity, two diseases where metabolic issues are central to the problem. He is fascinated by mitochondria.

    “Our hypothesis … is there may be a systemic problem with the ability of the mitochondria to produce the energy the body needs to function and that leads to feelings of fatigue as well as some of the other symptoms people with ME/CFS get,” he says.

    https://www.emerge.org.au/blog/professor-ken-walder
     
    Andy, Mar 24, 2021
    #25
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  6. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    This reminds me of what @Jonathan Edwards has been saying
    "“In the past in ME/CFS research, which has been really underfunded for a long period of time, people do what they can. People have taken white blood cells,” he says. “The problem with that is white blood cells are not a highly energetic cell. They spend most of their time just cruising around in a fairly relaxed phase.”"
     
    Last edited: Mar 28, 2021
    FMMM1, Mar 28, 2021
    #26
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  7. RoseE

    RoseE Senior Member (Voting Rights)

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    No date on this 'latest news' item, but it is rather sad for the ME/CFS community throughout Australasia.
    Heidi and her team have certainly raised the bar for support & advocacy organisations in this part of the world. I am grateful for what has been achieved.
    https://www.emerge.org.au/blog/dr-heidi-nicholl
     
    RoseE, Apr 1, 2021
    #27
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  8. Hutan

    Hutan Moderator Staff Member

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    Damn. Heidi will be greatly missed.
     
    Hutan, Apr 1, 2021
    #28
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  9. Sean

    Sean Moderator Staff Member

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    :emoji_bouquet:
     
    Sean, Apr 2, 2021
    #29
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  10. Simone

    Simone Senior Member (Voting Rights)

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    Yeah, she really will. Big shoes to fill.
     
    Simone, Apr 7, 2021
    #30
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  11. Andy

    Andy Committee Member

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    Andy, Apr 30, 2021
    #31
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  12. Andy

    Andy Committee Member

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    Andy, Jun 23, 2021
    #32
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  13. Trish

    Trish Moderator Staff Member

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    It is interesting that Emerge have switched focus from having a scientist with management experience as CEO to a manager with some health charity experience. Will Emerge also appoint a scientific/medical officer of some sort? Can they afford both?
    I hasten to add that I'm not judging this as either a good or a bad move, just curious about the apparent difference in emphasis.
     
    Trish, Jun 23, 2021
    #33
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  14. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    I read a recent article in Bike, a UK motorcycle magazine about Casey Stoner.

    He is, I believe about 35. What was brought home to me again, is how many decades have been frittered away doing worse than nothing for the people with this disease. Generations of people have acquired this illness, while science has stood still.
     
    DokaGirl, Jul 10, 2021
    #34
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  15. Ravn

    Ravn Senior Member (Voting Rights)

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    I assume this is kosher?
    [EDIT: looks like it is.]

    They seem to have released a Pacing App (saw the link on social media somewhere I can't recall now).

    But the app is not mentioned on their website and the developer link given on the Google Play site goes to the non-existent https://emerge.com.au (their real website ends in .org.au).
    [EDIT: The app has now been listed on the website.]

    Haven't tried the app myself.
    https://play.google.com/store/apps/details?id=au.org.emerge.pacing
     
    Last edited: Aug 26, 2021
    Ravn, Aug 25, 2021
    #35
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  16. RoseE

    RoseE Senior Member (Voting Rights)

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    It is listed today on their website https://www.emerge.org.au/Blog/mecfs-pacing-app
     
    RoseE, Aug 26, 2021
    #36
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  17. Ravn

    Ravn Senior Member (Voting Rights)

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    Thanks Rose. Have edited my post above.
    From the blog:
     
    Ravn, Aug 26, 2021
    #37
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  18. ola_cohn

    ola_cohn Established Member (Voting Rights)

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    Emerge Australia sent out an email today with an update from the new CEO Anne Wilson who took over earlier this year from Heidi Nicholls. Some excerpts:

    Later this week we will be launching the start of a six-month awareness raising campaign to put ME/CFS on the map. This campaign will put ME/CFS front and centre in the minds of everyday Australians, healthcare practitioners, policy makers and those most influential within our community.

    When I first started as CEO, I had a number of concerns. Firstly, I was concerned about the limited media attention ME/CFS received. Secondly, the majority of important news and education about ME/CFS wasn’t reaching those outside our strong and resilient community. Finally, I was concerned by the lack of understanding among the majority of clinicians, governments and the general community regarding diagnosis and management of ME/CFS.

    Now is the right time to launch a bold campaign to address these issues. Long COVID, and the many studies now published about its similarities with ME/CFS, provides us with this opportunity.

    You will start hearing about this campaign in the coming days. Our aim is to build the legitimacy of both ME/CFS and Emerge Australia through a ‘disruptive’ media campaign that highlights similarities between ME/CFS and Long COVID. You can see the campaign on social media and soon in print media, in a national publication.
    ​
     
    ola_cohn, Nov 17, 2021
    #38
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  19. Andy

    Andy Committee Member

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    Supporting Australians with ME/CFS and Long COVID: Priorities for the 2022 Federal Election

    "Emerge Australia’s State of the Nation report includes five priority areas for government to improve the lives of people with ME/CFS. Click here to read the report.

    In the lead up to the federal election, Emerge Australia is writing to all federal parliamentarians to seek their support for these five priority areas.

    If you would like to help raise awareness of the needs of people with ME/CFS, please click here to send a copy of these election priorities to your federal parliamentarian."

    https://www.emerge.org.au/blog/mecfs-priorities-for-the-2022-federal-election
     
    Andy, Apr 27, 2022
    #39
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  20. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Dolphin, May 10, 2022
    #40
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