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Griffith Uni ME/CFS Centre for NeuroImmunology & Emerging Diseases opens

Discussion in 'General ME/CFS News' started by Simon, Dec 1, 2013.

  1. Simon

    Simon

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    Report from News Medical: People with CFS to benefit from Griffith’s National Centre for Neuroimmunology and Emerging Diseases
    Looks like not excluisve to CFS/ME but is led by Sonya M-G, and the centre is being opened on Dec 2 as part of a CFS International Symposium on Griffith University's Gold Coast Campus.

    A new specialised CFS clinic will be opened in Feb 2014:
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Nico and Simon like this.
  3. alex3619

    alex3619 Senior Member

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    Hmmmm, that clinic is less than 100 miles from me. :D
    L'engle, Valentijn, rosie26 and 6 others like this.
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Hey, @alex3619 - would you like a lodger? :D
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  5. alex3619

    alex3619 Senior Member

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    Lol MeSci, I do realize you are half joking, but here are some ideas.

    I do have a spare room but this place is SUPER hot, even for a Queenslander. Most people from colder climes would melt. :eek: It is however used for storage, and is full to the door ... I do wonder if I could get storage room somewhere and move it all. However I am still a long way from the institute, and public transport is not good between here and there unless you can handle trains. Otherwise I would consider helping people out for the short term anyway.

    I am considering contacting the people at the institute and inquire about lodging, rooms, etc in nearby areas. The Gold Coast hotels/motels etc. tend to be very very expensive, though I guess it depends where you stay.

    Now a place on the Gold Coast such as a several room short term accommodation apartment might be hired by several patients, and used as needed. Serviced rooms only cost a little more than a hotel room for a single person if I recall correctly, but tend to be out of the tourist district ... which is good, because Griffith University is outside of it too. There will probably be high demand times when no rooms are available though.

    As a Griffith University alumni I can probably get some hotel room discount for myself, but it would still be very expensive.

    If I recall correctly the hospital has or is getting some beds for ME patients, that likely will have nurses etc. who are actually trained to deal with ME by people who know what they are doing. That has to be a big plus!

    For anyone with the strength for a little holidaying, which sadly is too few of us, the Gold Coast is a premium tourist destination, though much of it is energy intensive.
    Last edited: Dec 1, 2013
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  6. Lynne B

    Lynne B Senior Member

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    Simon, that's brilliant news, thank you! This is our best hope yet for sound, committed treatment in Australia.

    For me, it means either a two day drive or a plane trip away. I think when the clinic opens in February they'll be rushed by people wanting appointments, many from interstate, and they'll probably soon be able to recommend reasonable places to stay.

    Cheers, Lynne
    aimossy, rosie26, beaker and 2 others like this.
  7. akrasia

    akrasia Senior Member

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    This is very important news. Elizabeth Unger, of the CDC, is going to give the opening address, participate in officially unveiling the center's plaque, and will deliver a closing address. Clearly, the CDC is giving its imprimatur to this approach to the illness. Major.






    Perhaps this should have its own thread:


    http://www.griffith.edu.au/health/national-centre-neuroimmunology-emerging-diseases/news-and-events



    The 2nd International Symposium for Chronic Fatigue Syndrome/Myalgic

    Encephalomyelitis



    December 2013

    Gold Coast, Australia



    Program



    Monday, December 2nd



    8:30 – 9:30am National Centre for Neuroimmunology and Emerging

    Diseases Opening Ceremony

    8:30am Professor Sonya Marshall-Gradisnik Co-Director, National

    Centre for Neuroimmunology and Emerging Diseases Griffith University,

    Gold Coast, Australia - Introduction

    8:35am Professor Allan Cripps Pro Vice Chancellor Health Griffith

    University, Gold Coast, Australia - Welcome address

    8:45am Dr Elizabeth Unger Chief, Chronic Viral Diseases Branch Centers

    for Disease Control and Prevention Atlanta, United States of America -

    Opening address

    9:00am Professor Allan Cripps Pro Vice Chancellor Health Griffith

    University, Gold Coast, Australia

    Dr Elizabeth Unger Chief, Chronic Viral Diseases Branch Centers for

    Disease Control and Prevention Atlanta, United States of America -

    Official plaque unveiling

    9:05am Professor Sonya Marshall-Gradisnik Co-Director, National Centre

    for Neuroimmunology and Emerging Diseases

    Griffith University, Gold Coast, Australia - Ceremony conclusion



    Session 1

    Session Chair: Dr Donald Staines

    10:40 – 12:45pm International Delegate Presentations

    10:45am Opening address - Professor Sonya Marshall-Gradisnik

    Co-Director National Centre for Neuroimmunology and Emerging Diseases

    Griffith University, Gold Coast, Australia

    10:50am Inaugural Alison Hunter Memorial Foundation address -

    Professor V. Hugh Perry University of Southampton, Southampton, United

    Kingdom

    11:35am Therapeutic and physiological relevance of cortistatin as a

    key molecule in the development and progression of inflammatory and

    autoimmune diseases - Dr Elena Gonzalez-Rey Institute of Parasitology

    and Biomedicine, Granada, Spain

    11:50am Therapeutic potential of the vasoactive intestinal peptide in

    autoimmunity: are we ready for its clinic application? -

    Professor Mario Delgado Institute of Parasitology and Biomedicine,

    Granada, Spain

    12:05pm Involvement of the tryptophan metabolism in neuroinflammation

    - Professor Gilles Guillemin Macquarie University, Sydney, Australia

    12:20pm Contribution of neuroimaging to the differentiation of Myalgic

    Encephalomyelitis/Chronic Fatigue Syndrome from anxiety and depression

    - Dr Richard Kwiatek Lyell McEwin Hospital, Adelaide, Australia

    12:35pm Questions and open discussion



    Session 2

    Session Chair: Associate Professor Brett Lidbury

    1:25 – 3:00pm National Centre for Neuroimmunology and Emerging

    Diseases Presentations

    1:25pm Current directions: National Centre for Neuroimmunology and

    Emerging Diseases - Professor Sonya Marshall-Gradisnik Co-Director

    National Centre for Neuroimmunology and Emerging Diseases Griffith

    University, Gold Coast, Australia

    1:40pm Immune dysregulation in Chronic Fatigue Syndrome/Myalgic

    Encephalomyelitis - Dr Ekua Brenu Post-doctoral Fellow National Centre

    for Neuroimmunology and Emerging Diseases Griffith University, Gold

    Coast, Australia

    2:00pm The immunological profile of Chronic Fatigue Syndrome/ Myalgic

    Encephalomyelitis subgroups - Ms Sharni Hardcastle PhD Candidate

    National Centre for Neuroimmunology and Emerging Diseases Griffith

    University, Gold Coast, Australia

    2:25pm The application of case definitions in Chronic Fatigue

    Syndrome/Myalgic Encephalomyelitis research - Ms Samantha Johnston

    PhD Candidate National Centre for Neuroimmunology and Emerging

    Diseases Griffith University, Gold Coast, Australia

    2:40pm Questions and open discussion



    Session 3

    Session Chair: Professor V. Hugh Perry

    3:15 – 4:30pm International Delegate Presentations

    3:15pm New horizons for Myalgic Encephalomyelitis/Chronic Fatigue

    Syndrome - Dr Daniel Peterson Simmaron Research Institute Sierra

    Internal Medicine Nevada, United States of America

    3:30pm Long term outcomes in young people with Chronic Fatigue

    Syndrome: Are there any predictors for outcomes? - Dr Katherine Rowe

    Murdoch Children’s Research Institute, Melbourne, Australia

    3:45pm Paediatric Chronic Fatigue Syndrome/Myalgic Encephalomyelitis:

    State of knowledge and future directions - Dr Sarah Knight Murdoch

    Children’s Research Institute, Melbourne, Australia

    3:55pm The clinical management of Chronic Fatigue Syndrome/Myalgic

    Encephalomyelitis in general practice - Dr Rosamund Vallings

    University of Auckland, Auckland, New Zealand

    4:10pm Strategies to understand molecular pathways affected in Myalgic

    Encephalomyelitis/Chronic Fatigue Syndrome and establish a diagnosis -

    Professor Warren Tate University of Otago, Dunedin, New Zealand

    4:20pm Questions and open discussion



    4:30-5:00pm The 2nd International Symposium for International Chronic

    Fatigue Syndrome/Myalgic Encephalomyelitis Closing

    4:30pm Mr Ross Humphreys Chair, Steering Commitee National Centre for

    Neuroimmunology and Emerging Diseases Griffith University, Gold Coast,

    Australia - Introduction

    4:35pm Dr Elizabeth Unger Chief, Chronic Viral Diseases Branch Centers

    for Disease Control and Prevention Atlanta, United States of America -

    Closing address

    4:50pm Mrs Christine Hunter AM Alison Hunter Memorial Foundation,

    Sydney, Australia - Closing remarks

    4:55pm Dr Donald Staines Co-Director National Centre for

    Neuroimmunology and Emerging Diseases Griffith University, Gold Coast,

    Australia - Conclusion and future directions

    5:00pm Symposium conclusion
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  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    wow thats today.
    I suppose its not open to the public?
    I hope some imteresting things come out of it and someone can post about it?

    cheers!!
    aimossy and merylg like this.
  9. Lynne B

    Lynne B Senior Member

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    Hi, heaps, and thanks, akrasia, for the news.

    I don' t think they made anything public from the last symposium, but it would be really interesting to study these papers in depth. They'll probably hold off until peer-reviewed publication though. There are good people there, but they're getting through a lot in one day. I suppose they'll have informal meetings either side of this one though.
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  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    yes maybe some networking going on. Dr peterson is there with his stuff and there is also some good research going on in NZ and they are at this meeting also. Theres a few there joining forces.

    I wonder what there clinic will be like, which doctors and what sort of treatments are they going to use?? Is there going to be any treatments there that arent available to us now?
    rosie26, WillowJ and merylg like this.
  11. lnester7

    lnester7 Seven

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    Is a good source for our OIM contract reference studies. If anybody can keep note of the studies references.
    @Rem @Alex
  12. Lynne B

    Lynne B Senior Member

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    Heaps, this is what's on the research centre's home page: http://www.griffith.edu.au/health/national-centre-neuroimmunology-emerging-diseases/research

    NCNED is a world class research facility focusing on the etiology and pathomechanisms of ME/CFS. Our research is focused towards identifying biomarkers of ME/CFS for translation into the clinical environment. Our specific areas of focus are:

    • Natural Killer (NK) cell cytotoxicity and signalling dynamics
    • T- and B-cell phenotypes profiles and cytokine production
    • Genomic and proteomic profiling and gene expression
    • Epidemiological analysis and current diagnosis criteria
  13. aimossy

    aimossy Senior Member

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    I have liked the info ive read on Griffith uni. I also really like the attitude that seems to eminate, there is no wishy washy stuff. Its matter of fact in the attitude that this is real and they are just getting on with grabbing it by the scruff of the neck.
    NZ Dr Vallings and Prof Warren Tate are going to this opening today.I thought that was positive too.
    Thankyou Griffith Uni!
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  14. alex3619

    alex3619 Senior Member

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    I used to be on the institutes mailing list but for some reason I keep dropping off, probably because I can't join their studies as a patient due to too many comorbidities. Most local advocates have been following the progress here, and I am an alumni of the same university though a different campus.

    We know about the research, much of which is still not published. What we don't know about is treatment. However setting this up, plus other facilities, mean they can consider clinical treatment trials. Now that would be interesting.
    MeSci and aimossy like this.
  15. merylg

    merylg Senior Member

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  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I have just emailed the person i have been in contact with in the past through Griiffith and asked about there clinic for treating cfs/me. Is there going to be testing that is not available to other gp's and also what types of treatments will be used and or will there be any experiemental type treatments available. We will se what type of reply i get back??

    cheers!!
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  17. ukxmrv

    ukxmrv Senior Member

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    Were patients invited to the opening or the symposium?
  18. Firestormm

    Firestormm Guest

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    There seems to have been some confusion expressed over the novelty of having this flow cytometer purchased and installed - to read the comments beneath Cort's blog on the subject:

    Reply:
    So, my question then is, is this flow cytometer unique to this institute, unique to Queensland, or Australia, or indeed unique to an ME/Neuroimmune research lab?

    And what does such a piece of kit bring to the research into ME that we didn't have before - presuming of course that it is unique which seems now to be in doubt?

    Thanks.
  19. aimossy

    aimossy Senior Member

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    well brand new seems a clue!!!!
  20. Firestormm

    Firestormm Guest

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    Yes. Brand new to them of course - but presumably not to ME research. This was sold as being unique but I think Cort got his wires crossed.
    aimossy likes this.

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