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Brisbane/Goldcoast - Looking for patients for upcoming neuroimmunology study

Discussion in 'Active Clinical Studies' started by Sherrie, May 17, 2013.

  1. Sherrie

    Sherrie

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    I saw this on facebook the other day and couldn't see it mention here so I thought I would add.

    National Centre for Neuroimmunology and Emerging Diseases - NCNED, Griffith University.


    Facebook page
    Allyson and alex3619 like this.
  2. Allyson

    Allyson *****

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    Yes Sherrie,

    i have posted it here somewhere but ot on this place which is where it should be - an additional reminder came trhough today with specifications though

    Griffth Uni looking for people in the Gold Coast/Brisbane area who are housebound/bedridden with CFS/ME to participate in an upcoming study.

    Study into the SEVERELY effected ME group ...... the 25% group who remain bedbound/housebound ..... contact if you are in this category of ME and would like to participate:


    sharni.hardcastle@griffithuni.edu.au (not for those with moderate or mild levels or those who have recovered)


    Did you put it on Not Crazy too? Cannot remeber if i did but that is where peak audience would be.


    Cheers mate,

    Ally
  3. Sherrie

    Sherrie

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    Hello Ally, no I haven't posted it anywhere else.
    Allyson likes this.
  4. Allyson

    Allyson *****

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    they have extended the study boundaries no to Northern NSW as well

    When they get to Melbourne I am in lol
  5. Sherrie

    Sherrie

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    They just posted for more on facebook, including ME/CFS sufferers that are still able to work part time:

    Good morning all, we are looking for NEW PARTICIPANTS for our studies! If you or anyone you know would like to be a part of our research, please contact me on: sharni.hardcastle@griffithuni.edu.au. Do not hesitate to contact us if you have any questions about being part of our research, all participation is completely voluntary.
    We need participants who:

    1. Are severely ill, housebound and/or bedridden by CFS and/or ME. Aged between 20 and 60 years old. You will not be required to travel to participate, if eligible, we will travel to your home so that you can participate. Need to be located within around an hour of the Gold Coast so we can return to the lab in time. Hence between Brisbane and Byron Bay.

    2. Have CFS and/or ME and are mobile/able to care for yourself/possibly be working part time. Aged between 30 and 50 years old. Participation requires you to be able to travel to a designated location for a duration of no more than an hour. Locations are in Brisbane, Gold Coast and Tweed Heads.

    3. Are 'healthy' to be control subjects. Must not have CFS, ME, Fibromyalgia or any related symptoms. Aged between 30 and 50 years old. Participation requires you to be able to travel to a designated location for a duration of no more than an hour. Locations are in Brisbane, Gold Coast and Tweed Heads.

    If you or someone you know may be able to participate, do not hesitate to contact us for more information: sharni.hardcastle@griffithuni.edu.au.

    Thankyou again for your continual support for our research, I look forward to hearing from you, NCNED.
    Allyson likes this.
  6. Allyson

    Allyson *****

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    thanks Sherrie - maybe we should post the reuqest for healthy controls elsewhere as well?

    eg geneeral fb paged in Australia
    Any suggestionss anyone?

    cheers

    Ally
  7. taniaaust1

    taniaaust1 Senior Member

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    So good to hear that they are trying to get bedbound/housebound people in their studies too.

    I do thou hope their control group isnt mostly from the ME/CFS own close family members. I think I had some kind of immune fault in my body even before getting ME/CFS and what if its a genetic thing.
    ukxmrv and Allyson like this.
  8. Wifi123

    Wifi123 Senior Member

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    Live on the Gold Coast and suffer extreme CFS, ME, and FMS, Have suffered CFS and ME symptoms since 1969, diagnosed 1984, 1994 and FMS in 2004.
    Allyson likes this.
  9. Wifi123

    Wifi123 Senior Member

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    Yes Allyson, I agree I have been running around in circles since 1969 trying find out the cause of this debilitating disorder, and now I have a good grasp of it from research and suffering, and discovered other syndromes and disorders are much the same.
  10. Allyson

    Allyson *****

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    HI WIfi, Sherrie
    did you register to take part in the research?

    cheers

    Ally
  11. Allyson

    Allyson *****

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    I think from a talk Don Lewis gave that they are now onto the fact that there is some genetic link to the illness Tania so would be on the lookout for that.

    cheers
    Ally
    ukxmrv likes this.
  12. Wifi123

    Wifi123 Senior Member

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    Hi Ally, I did email Sharni, but no reply! Was there a site to register?
  13. Allyson

    Allyson *****

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    Hi wifi
    ye the griffith Uni fb page - which is a good one to keep in your radar BTW
    https://www.facebook.com/#!/pages/N...erging-Diseases-NCNED/301252900007181?fref=ts

    but let me know if link is out or any more probs ; Sharni is keen as mustard so must be some error if
    did not get back to you.

    Me cfs vic /Aus is starting up a forum too soon
    GL

    ALly
  14. aimossy

    aimossy Senior Member

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    Hi,
    A couple of days ago I saw on a fb group that Griffith University NCED are needing more people for a trial.
    Im not sure if its this thread but thought I should say I saw that.:)
    edit...I have just seen mark has posted a thread on it.
    Last edited: Nov 9, 2013
    heapsreal likes this.
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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