Jen Brea launches mass-advocacy platform — #MEAction goes live!
Jen Brea is a phenomenon. After working as a freelance writer in China and Africa, she enrolled for a PhD at Harvard in political science but, four years ago, got sick. She had a fever that lasted ten days.
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Aussies new news from the new National Centre

Discussion in 'General ME/CFS News' started by taniaaust1, Aug 1, 2014.

  1. taniaaust1

    taniaaust1

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    Sth Australia
    Info from Victoria ME/CFS message from NCNED on their wall

    "ME/CFS Australia (Victoria)


    Yesterday at 12:30am
    For those of you keen to be involved, here's how the new clinic will work. There are some key dates in here to take note of, and the process for attending the clinic.
    "clinic.

    National Centre for Neuroimmunology and Emerging Diseases - NCNED
    Dear everyone,
    As you would know, we have been working extremely hard for 8 months to deliver a specialised CFS/ME clinic. The good ne...ws is the clinic has been launched!! YAY!

    CFS/ME patients will be able to contact reception after September 8th 2014 to organise a consultation. Further information can be found on our NCNED website for the clinic after September 8th 2014.
    Please note you will need a referral from a general practitioner or specialised clinician to make an appointment.

    If you have already provided your name to be on our waiting list prior to today, you will be contacted. If your name is not already on our waiting list, please contact reception on September 8th 2014.

    We know everyone is very excited and very eager about the clinic and we are too. Given we are running 4 large studies concurrently at the moment, September 8th has been chosen for you to make contact with reception as that will allow us time to finalise our projects. This will allow the NCNED team to focus on our research and then be available to patients at that time.

    Please be patient with us as there are only a limited number of us, we do understand.
    Best wishes,
    NCNED team
     
    RustyJ, rosie26, aimossy and 2 others like this.
  2. knackers323

    knackers323 Senior Member

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    Who has been here and/or involved in the study's?
     
  3. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    We have at least one member who was in the studies. I did not qualify due to comorbidities. There is currently about an eight month waiting list. They have no cutting edge treatments, which should be expected, but some of the testing is beyond what you can get from regular doctors. I do not have any details about all this.

    I will be contacting their reception at some point. If I go there I will probably blog about it.

    What they are about in the main I think is educating doctors, including new medical students. If they succeed then the level of ignorance with doctors will be greatly decreased. So what you can expect is a doctor who actually knows the science, at least to some extent. They also refer patients out to other doctors a lot. Again I do not know details, I am getting all this second hand as well.
     

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