1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for 'CFS'.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 4th November 2024 is here.
    Dismiss Notice
  3. Welcome! Read the Core Purpose and Values of our forum.
    Dismiss Notice

Australia: News from Griffith University, National Centre for Neuroimmunology and Emerging Diseases (NCNED)

Discussion in 'News from organisations' started by hixxy, Dec 4, 2018.

Tags:
Page 1 of 3
  1. hixxy

    hixxy Senior Member (Voting Rights)

    Messages:
    119
    Edit: This thread includes several other threads merged with it.

    Some earlier threads on this team's work:

    The Courier Mail: Australian scientists prove CFS is real and have discovered a test for it
    Dec 2017 to Jan 2018

    Don Staines and Griffith
    Aug 2018

    Australia - Parliamentarians learn about ground-breaking science on debilitating neurological disease
    Aug 2018

    ABC: Your disease is real:Breakthrough in diagnosis of chronic fatigue syndrome
    August 2018
    _____________


    Generous $2m donation to bolster efforts of Griffith (NCNED) CFS researchers

    NCNED still managing to mop up every last drop of research funding for ME/CFS in Australia and have very little interesting to show for it.

    Continues here: https://app.secure.griffith.edu.au/...-bolster-efforts-of-griffith-cfs-researchers/
     
    Last edited by a moderator: Aug 21, 2024
    hixxy, Dec 4, 2018
    #1
    merylg, rvallee, ladycatlover and 3 others like this.
  2. BurnA

    BurnA Senior Member (Voting Rights)

    Messages:
    410
    BurnA, Dec 4, 2018
    #2
    TiredSam, Aroa, Trish and 5 others like this.
  3. Andy

    Andy Committee Member

    Messages:
    23,036
    Location:
    Hampshire, UK
    Code:
    https://www.facebook.com/permalink.php?story_fbid=1450844668381326&id=301252900007181
     
    Andy, Dec 13, 2018
    #3
    Invisible Woman, Hutan, MEMarge and 8 others like this.
  4. Andy

    Andy Committee Member

    Messages:
    23,036
    Location:
    Hampshire, UK
    Could go one of two ways I suppose. The partners in this might encourage NCNED to raise their standards, or they'll follow NCNED's lead - it will certainly be interesting to find out who they are working with in the UK.

    And interesting to see all the 'ICC is the one true definition' posts underneath the post as well.

    ETA: And I do wish that NCNED would use ME/CFS instead of CFS/ME.
     
    Andy, Dec 13, 2018
    #4
    Invisible Woman, JaimeS, Hutan and 7 others like this.
  5. Trish

    Trish Moderator Staff Member

    Messages:
    55,416
    Location:
    UK
    Trish, Dec 13, 2018
    #5
    Invisible Woman, MEMarge, adambeyoncelowe and 2 others like this.
  6. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,377
    Location:
    Aotearoa New Zealand
    On the NZ front, I see Dr Eiren Sweetman was attending the conference from the University of Otago team (Professor Tate). It makes sense that this group signs on to CHIME. It's a small group and it must be hard to build momentum unless working fairly closely with other teams.

    I think the CHIME consortium probably isn't a bad thing. I don't think we should assume that the members necessarily agree with NCNED research findings. Communication between teams, especially with teams from non-English speaking countries, will hopefully be helpful.
     
    Hutan, Dec 13, 2018
    #6
    Snowdrop, Invisible Woman and Andy like this.
  7. Andy

    Andy Committee Member

    Messages:
    23,036
    Location:
    Hampshire, UK
    Andy, Dec 13, 2018
    #7
    Simone, Hutan and Invisible Woman like this.
  8. MyalgicE

    MyalgicE Senior Member (Voting Rights)

    Messages:
    146
    Location:
    Australia
    MyalgicE, Jan 24, 2019
    #8
    merylg, Little Bluestem, Forbin and 14 others like this.
  9. boolybooly

    boolybooly Senior Member (Voting Rights)

    Messages:
    592
    Interesting read thanks.
     
    boolybooly, Jan 28, 2019
    #9
    Forbin and MyalgicE like this.
  10. BruceInOz

    BruceInOz Senior Member (Voting Rights)

    Messages:
    414
    Location:
    Tasmania
    Pity his responses were so shallow.
     
    BruceInOz, Jan 29, 2019
    #10
    Andy, Sunshine3, andypants and 2 others like this.
  11. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

    Messages:
    622
    Vague
     
    Sunshine3, Jan 30, 2019
    #11
  12. hixxy

    hixxy Senior Member (Voting Rights)

    Messages:
    119
    From Facebook post:

    So I guess they're still hoovering up every last drop of funding available for ME in Australia.
     
    hixxy, Jan 31, 2019
    #12
    Sid, alktipping, andypants and 3 others like this.
  13. Sean

    Sean Moderator Staff Member

    Messages:
    8,067
    Location:
    Australia
    All I can say is that I hope they are on the right track.

    Otherwise, a big waste of time and money.
     
    Sean, Jan 31, 2019
    #13
    alktipping, andypants, Trish and 1 other person like this.
  14. Andy

    Andy Committee Member

    Messages:
    23,036
    Location:
    Hampshire, UK
    Andy, Nov 21, 2021
    #14
    livinglighter, Trish, Lidia and 6 others like this.
  15. Andy

    Andy Committee Member

    Messages:
    23,036
    Location:
    Hampshire, UK
    Latest hype from Griffith/NCNED.

    World first chronic fatigue syndrome findings could fast track response to Long COVID

    "Griffith University researchers are hoping to find a treatment for Long COVID after proving the illness shares the same biological impairment as patients with Chronic Fatigue Syndrome (known internationally as Myalgic Encephalomyelitis (ME/CFS)).

    In a world first, their study suggests COVID-19 could be a potential trigger for ME/CFS and their 10 years of research on ME/CFS could help fast track understanding and treatment of Long Covid.

    Griffith University’s National Centre for Neuroimmunology and Emerging Diseases Director, Professor Sonya Marshall-Gradisnik, said the breakthrough findings will assist with investigations into therapeutic strategies to help both Long COVID and ME/CFS patients."

    https://news.griffith.edu.au/2022/0...ings-could-fast-track-response-to-long-covid/

    The study hasn't been published yet....
    "The breakthrough findings will be published in the renowned international Journal of Molecular Medicine."
     
    Andy, Aug 13, 2022
    #15
    Simone, livinglighter, Simon M and 6 others like this.
  16. RedFox

    RedFox Senior Member (Voting Rights)

    Messages:
    1,293
    Location:
    Pennsylvania
    Keeping us in suspense? It's something with ion channels, which do all sorts of things. Hope it'll be out soon!
     
    RedFox, Aug 13, 2022
    #16
    livinglighter, Peter Trewhitt and Trish like this.
  17. Andy

    Andy Committee Member

    Messages:
    23,036
    Location:
    Hampshire, UK
    The pilot study, on 5 ME/CFS patients, 5 Long Covid Patients and 5 controls, that this hype is built on can be found here, Transient receptor potential melastatin 3 dysfunction in post COVID-19 condition and ME/CFS patients 2022, Martini Sasso et al
     
    Andy, Aug 19, 2022
    #17
    Simone, Hutan, RedFox and 4 others like this.
  18. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,924
    Location:
    UK
    Largest medical research grant to help ME/CFS and Long COVID research
    https://news.griffith.edu.au/2023/0...grant-to-help-me-cfs-and-long-covid-research/
     
    Sly Saint, Apr 19, 2023
    #18
    shak8, Hutan, hibiscuswahine and 9 others like this.
  19. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,377
    Location:
    Aotearoa New Zealand
    While I have reservations about NCNED (and awe at their ongoing ability to pull in funding), I think the Australia Rickettsial Research Laboratory and specifically the main person there, Professor Stephen Graves, is good, scientifically and for their concern about people with ME/CFS. It's a bit of a weird connection for an LDN study though.

    I'm not sure about the 'WHO Reference Laboratory' - there are a network of reference laboratories rather than it being one thing.

    I hope some members here will participate and let us know how the study is being done. Perhaps we should try to get hold of the protocol.
     
    Hutan, Apr 19, 2023
    #19
    Peter Trewhitt and Trish like this.
  20. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    15,175
    Location:
    London, UK
    A number of people will be pleased if another LDN trial is set up. I understand there is already on in Canada for Long Covid. There is enough interest to jutify trying to get a clear answer, even if the science base is thin.

    I hope the study uses adequate methodology. Studying LDN is tricky since the claim is that you need just the right dose and it is hard to do a double blind trial with 'just the right dose' placebo.

    I was wondering whether one option would be to have four doses, covering the likely range, and to have patients try 'dose escalation' when one or more doses is real and others not.
     
    Jonathan Edwards, Apr 19, 2023
    #20
    merylg, RedFox, FMMM1 and 7 others like this.
Page 1 of 3

Share This Page