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ME/CFS International Research Symposium, March 2019, Australia

Discussion in 'ME/CFS research news' started by Simone, Nov 26, 2018.

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  1. JaimeS

    JaimeS Senior Member (Voting Rights)

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    1,248
    Location:
    Stanford, CA
    Wen Zhong said actually that there were fewer viruses in pwME. It wasn't a huge difference, but it was the case. Unfortunately after a long day like today I'm not sure whether or not you have DNA & RNA the right way around, sorry. :confused:
     
    JaimeS, Mar 14, 2019
    #41
    ukxmrv, Trish, Simone and 2 others like this.
  2. Hutan

    Hutan Moderator Staff Member

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    29,374
    Location:
    Aotearoa New Zealand
    Wow, the talk from Greg Hunt, The Australian Federal Government Health Minister was pretty remarkable. Congratulations to the Australian ME/CFS community - you've achieved amazing things.

    Here's a transcript of it.

    "Welcome everybody to today's Emerge ME/CFS International Research Symposium.

    We know, and you know, that myalgic encephalomyelitis and chronic fatigue syndrome are major issues that can have a profound impact on individual and community life. 240,000 Australians at least have some form of ME or CFS. And, of those, a quarter can be housebound with the same impact on them as MS or any of the significant neurological conditions. So, it can be a crippling and a catastrophic diagnosis for an individual.

    But it's often misunderstood, and the research is not as strong as in so many areas of our chronic conditions. So, I want to thank and congratulate everybody for being part of today.

    I particularly want to acknowledge the ME/CFS community. Those from my electorate, those from around the country who have visited me within my portfolio's responsibilities and have made the case about the importance.

    I agree, it's real, it's significant, it's important.

    What we need therefore, is to provide opportunities for you as researchers, as professionals, to be able to deliver better results for patients. Therefore today I want to invite you to apply as part of the Medical Research Future Fund under the Clinical Trials Program to look where you believe there are treatments in different forms for patients. I think this absolutely meets the definition of an unmet need. And, secondly, to look through the Frontiers Science Programme at opportunities for a grand national project on ME/CFS.

    I think this is an incredibly important area. And what we do can have an impact at the local level, for individuals and at the national level. And if Australian research leads the world, it can have an impact for patients right around the globe.

    So, thank you for your work, for the individuals, for those that I've known, those that you know and for whom you care. For our broader community that can be profoundly affected by this, but also the capacity to know that your research and your discovery, whether it's through the NHMRC where they have recently established an Advisory Panel at my request for the first time to deal with this and to ensure it is given the prominence in NHMRC research analysis that it deserves, or through the Medical Research Future fund going forwards.

    This is our hope and our moment and our opportunity to deal with ME and CFS on a national scale through our research opportunities in a way that has never been done before.

    So, it's a moment of real hope and opportunity, backed by real funding.

    I thank you and I honour you and I wish you well in your deliberations."
    ​
    I think that signals a major shift. Again, well done to the Australian ME/CFS community, brilliant. @dave30th
     
    Hutan, Mar 14, 2019
    #42
    MEMarge, lafarfelue, sea and 29 others like this.
  3. Alvin

    Alvin Senior Member (Voting Rights)

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    Thats weird, the second day only has 4 hours of streaming and Dr Davis is not on it at all that i can see.
     
    Alvin, Mar 14, 2019
    #43
  4. andypants

    andypants Senior Member (Voting Rights)

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    1,334
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    @Alvin many presentations taken out bc of unpublished results I think.
     
    andypants, Mar 14, 2019
    #44
    MEMarge, RuthT, Hutan and 1 other person like this.
  5. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    622
    Wow that transcript from Greg Hunt is super news!!
     
    Sunshine3, Mar 14, 2019
    #45
    MEMarge, petrichor, Hutan and 3 others like this.
  6. Alvin

    Alvin Senior Member (Voting Rights)

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    If i understood correctly they didn't air those to start with.
    Yesterdays presentations like this had the blank screen and was 7 hours long, todays seems to have started after lunch
    I suspect its an editing error
     
    Alvin, Mar 14, 2019
    #46
    Simone and andypants like this.
  7. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    692
    I caught Ron Davis's presentation. The one thing I jotted down was:

    - 1/3 to 1/4 of ME patients in their study had high mercury / low selenium (and that leads to low T3) and he suggested that if one is low in selenium that supplementing may help, but to be aware that too much selenium is bad too.

    He also said that 2 currently existing medications 'corrected' (my word) the ME cells impedance dysfunction, but did not name them.

    Robert Phair mentioned hyperbaric oxygen therapy as a potential way to activate IDO.
     
    ScottTriGuy, Mar 14, 2019
    #47
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  8. Helen

    Helen Senior Member (Voting Rights)

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    Helen, Mar 14, 2019
    #48
    MEMarge, Hutan, Lisa108 and 6 others like this.
  9. Alvin

    Alvin Senior Member (Voting Rights)

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    Nice.
    If anyone has twitter could you ask them why day 2 is missing the morning (i suspect a technical glitch).
     
    Alvin, Mar 14, 2019
    #49
    andypants likes this.
  10. Aroa

    Aroa Established Member (Voting Rights)

    Messages:
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    Location:
    Spain
    IIME mercury.png
    This is what he said at 2018 IIMEC Conference :

     
    Last edited: Mar 15, 2019
    Aroa, Mar 14, 2019
    #50
    Inara, andypants, mariovitali and 2 others like this.
  11. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    London, UK
    That is worth knowing. It does not surprise me. The question now is whether or not there is justification for looking at this more, in the UK for instance.
     
    Jonathan Edwards, Mar 14, 2019
    #51
    MEMarge, Simone, FMMM1 and 5 others like this.
  12. Helen

    Helen Senior Member (Voting Rights)

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    357
    Luckily you don´t have to have twitter to read tweets. Just google twitter and a name or account and you´ll get there.
    I think what was missing were talks containing information about unpublished facts or trials.
     
    Helen, Mar 14, 2019
    #52
  13. mariovitali

    mariovitali Senior Member (Voting Rights)

    Messages:
    516

    Ron Davis mentioned Selenium, Low T3 and antioxidants ? This is great news i think.
     
    mariovitali, Mar 14, 2019
    #53
    Amw66 and ScottTriGuy like this.
  14. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    1,009
    I was blown away by Dr. Neil McGregors presentation. Identifying subsets by response to glucose, reasons for transcription changes, why amino acids are low, why the gut gets affected...... way too much to take in on one viewing. He covered soooo much in his hypothesis. Be interested in others takes. In the Q&A someone asked for his view on research given his 30 odd years in the area. He stated they now knew what projects needed to be done, all it takes is money. (my words from what I remember from yesterday)

    At the moment the video is still up. Click on the right side of the image and select event posts. His talk starts at 47mins.
    https://goliveaustralia.com.au/emerge2019/

    Dr Chris Armstrong had some great metabolic info on a joint longitudinal study with Jarred Younger - looking forward to that being published soon as the results are embargoed. So wonderful to see researchers in different parts of the world collaborating by analysing the same patient samples using their area of expertise to bring more value to a research project.
     
    wigglethemouse, Mar 14, 2019
    #54
    MEMarge, Inara, obeat and 14 others like this.
  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Location:
    UK
    I remember when some people were advising pwME to have their amalgam tooth fillings removed/replaced because of the mercury. I wonder if there is anything in that?
     
    Sly Saint, Mar 14, 2019
    #55
    MEMarge, Simone, Amw66 and 1 other person like this.
  16. mariovitali

    mariovitali Senior Member (Voting Rights)

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    I don't think the video is still available. What you see is probably cache most likely because you haven't reloaded the page.
     
    mariovitali, Mar 14, 2019
    #56
  17. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    I refreshed on two different browsers and it is there. I can try a different computer.....
    upload_2019-3-14_10-35-44.png
    EDIT : I tried a computer not turned on for a few days and I see the same when I click on top right - event posts
     
    wigglethemouse, Mar 14, 2019
    #57
    Aroa, ukxmrv, Hutan and 2 others like this.
  18. mariovitali

    mariovitali Senior Member (Voting Rights)

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    Hmmm Thanks @wigglethemouse

    Not sure why this is so but in my computer i do not see the 2 posts on the right hand side. I tried 3 diff browsers (Chrome, Mozilla, Safari). So it seems to be my issue if others don't have the same problem
     
    mariovitali, Mar 14, 2019
    #58
  19. Stewart

    Stewart Senior Member (Voting Rights)

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    There should be a button/logo in the top right of the screen - when you hover your mouse over it the words 'Event Posts' appear. If you click on it, the two videos should pop up.
     
    Stewart, Mar 14, 2019
    #59
    Amw66, Aroa, Hutan and 2 others like this.
  20. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    wigglethemouse, Mar 14, 2019
    #60
    ScottTriGuy, Aroa, rvallee and 3 others like this.
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