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NCNED Qld seeking interstate PWCFS for research project

Discussion in 'General ME/CFS News' started by AndyPandy, Sep 11, 2014.

  1. AndyPandy

    AndyPandy Making the most of it

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    Just noticed online that the NCNED is looking for PWCFS in Adelaide, Canberra, Sydney and Melbourne to participate in a research project. I have contacted them and they told me it involves blood testing and a questionnaire.

    Some people will be excluded due to other conditions. I can't participate due to diabetes.

    You can contact the NCNED about this on ncned@griffith.edu.au
     
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  2. Little Bluestem

    Little Bluestem Senescent on the Illinois Prairie ❀❤✿Ƹ̵̡Ӝ̵̨̄Ʒ✿❤❀

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  3. taniaaust1

    taniaaust1

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    no I hadnt seen it, thank you.

    oh .. I probably wont be able to participate for the same reason AndyPandy cant, due to my hyperinsulinemia and sugar issues, thou I dont have an "offical" diabetic diagnoses yet but probably could get one if I had that test where on drinks the glucose as my reading do get in the 11 range (which is where the diabetic range is).

    umm I could contact them and try to get in.. maybe cause Ive only got the hyperinsulinemia and prediabetes diagnosed currently maybe I'll get in? Does anyone know the exact things on that exclusion list for this?

    Does anyone also know how long we have got to contact them? My elderly friend is away (who usually sorts things when Im screwing up all my accounts) and Ive screwed up my email account again and now cant even get into at all.

    ahh, does anyone know the phone number I could ring re this study?
     
    Last edited: Sep 13, 2014
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  4. AndyPandy

    AndyPandy Making the most of it

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    Hi @taniaaust1

    I think they have only just started asking for interstate people to participate. I got the impression that they were excluding people with a range of other health issues, not just diabetes. I don't know the full list of exclusions.

    Their phone number is (07) 5678 9283. This is the phone number for the research people, not the NCNED clinic.

    Best wishes

    Andy
     
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  5. alex3619

    alex3619 Senior Member

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    Like @AndyPandy I am excluded due to diabetes. Yet in time the testing should be available to everyone even outside of a study.
     
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  6. taniaaust1

    taniaaust1

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    A big thanks, I put it straight into my phone so I hopefully dont forget this and will ring Monday. umm my Aspergers could also get me excluded thou so far it hasnt done so with a ME/CFS study (Ive been 3 ME/CFS research studies but not throu these people).
     
  7. alex3619

    alex3619 Senior Member

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    Exclusions depend on what is being studied. They typically study immune function including NK and T cells. So if you have another disorder that can stuff up these cells you would be excluded. I would not imagine Aspergers is an issue.
     
  8. Lillybelle

    Lillybelle Senior Member

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    I have a an appt with the CFS Queensland clinic on March 6. Booked over 1 yr ago. Originally was for June but there was a cancellation. I'm from Melb so will fly up the day before.

    I will let you know how I go with the clinic and will ask about future trials and whether we can participate remotely.
    I'm being careful not to be overly optimistic. But I am hoping for some direction re treatment besides diet pacing meditation and gentle exercise.

    I'm now in my 4th yr not long by some others standards but still getting over the shock of permanent. Illness. I am however we'll enough to walk for half hour to work half days some weeks and not others. Still need two complete sleeps per day plus night. Have constant phlegm breathing issues headaches and dizziness every few hours.

    Have been on methylation for 1 year and have regular b12 injections plus daily supplements. Also do special breathing techniques including Buteyko and breath holds which have eliminated most of the asthma and help with the air hunger and tachycardia.

    Holding your breath lowers yr heart rate and increases co2 which is necessary for the transport of oxygen to tissues.
     

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