Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Sth Australian ME/CFS study still after people

Discussion in 'Latest ME/CFS Research' started by taniaaust1, Oct 28, 2016.

  1. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    ukxmrv, AndyPandy and Mel9 like this.
  2. anciendaze

    anciendaze Senior Member

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    Off-topic, but funny. My first response on reading title was "OMG! The Sith are in Australia and hunting ME/CFS patients. Where's my lightsaber?" :wide-eyed:
     
  3. Mel9

    Mel9 Senior Member

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    NSW Australia
  4. trishrhymes

    trishrhymes Senior Member

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    Looks like a potentially interesting study. Do you know what definition of CFS they are using?

    I note they are going to do DNA testing as well for future studies - I wonder whether they are going to collaborate with other ME/CFS studies around the world to make one big DNA study - a great case for data sharing and co-operation.

    Are you taking part, Tania?

    It's good to see something happening in my home state, even though I haven't lived there for decades.
     
    Mel9 likes this.
  5. taniaaust1

    taniaaust1 Senior Member

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    If there is a way I can I will, being homebound at this point it looks like I cant meet the getting to the hospital requirement for the study. I don't know what diagnostic criteria they are using for that study (I wish I'd thought to ask the researcher while on the phone, many of the studies here use the CCC)

    We have at least 3 ME/CFS studies right now going on in this state... unfortunately one of them is a bad study, discuised GET gaming study. Ive taken part of 3-4 ME studies here in the past.
     
    AndyPandy, ballard and trishrhymes like this.
  6. Lolo

    Lolo Senior Member

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    AUS
    From http://sacfs.asn.au/news/2016/02/02_13_sahmri_calling_for_research_participants.htm

    What are we going to do?

    • Ask you questions regarding your medical history (past and present), including mental health, your mood, food intake, smoking and alcohol consumption.
    • Assessment part 1: An initial interview and questionnaires, then collect 19mls of your blood for a health assessment (Approximately 3 hrs.).
    • Assessment part 2 (9.5 hrs. - 8am to 17.30 hrs.): Complete a DEXA scan (dual-energy X-ray absorptiometry) and take bloods across a normal day (9am – 5pm), taking blood samples every 7 minutes. A cannula will remain in your arm throughout the day allowing us to take the samples easily. You will complete some visual scales to indicate how you are feeling each hour. A genetic sample will be taken from this phase of the assessment (phase two). Please note that the genetic sample is for use in later research into CFS, and will help us develop a genetic database for this disease. We will provide you with food, drinks and entertaining material (iPad / magazines / TV).
    Well that excludes the worst of us.
     
    Little Bluestem likes this.

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