1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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To the Aussies

Discussion in 'General ME/CFS News' started by taniaaust1, Aug 13, 2010.

  1. gregf

    gregf Senior Member

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    No definitely not Tania. I meant I respect the reasons you explained in NC.:Retro smile:

    Why am I awake at 2am ? Well I have this illness called ME and .....
  2. alex3619

    alex3619 Senior Member

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    Hi gregf, I use terms that are used historically. XMRV (sorry, now HGRV- Human Gamma Retro Virus, it isn't a mouse virus) is claimed to cause HGRAD- Human Gamma Retrovirus Associated Disease) - this is claimed to be the latest claim from the WPI, and is a bombshell potentially. I use ME when I refer to ME research, and I use CFS when I refer to CFS research - the definitions used are different and I never want them confused, there is too much confusion already. Similarly, if research uses empiric or oxford or CCC this should be stated. There are only two terms we should be aiming toward at the moment, and maybe only one: ME and HGRAD. However, when we are discussion old research, and particularly bad research, we should use the original term based on diagnostic criteria used. Similarly, I usually dont use ME/CFS or CFS/ME (this one because it is a psychobabble term, Wessely likes it) but use "ME and CFS", because it is not 100% clear that these dont cover a spectrum of different disaases, especially CFS. In the time I have known of CFS, there have been several new diseases discovered, and patients who once had CFS no longer have this diagnoisis, they have for example Lyon's disease etc. ( I don't know if that is the correct term, it is the Lyon variant mutation of cortisol binding globulin, a genetic disorder).

    Bye
    Alex
  3. alex3619

    alex3619 Senior Member

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    PS HGRV and HGRAD are only proposed changes at this point. Alex
  4. priscilla

    priscilla

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    Proposed ME/CFS VIC education sessions to Doctors

    News report from mecfsvic@yahoogroups.com.au:
    We are trying to secure both Dr Byron Hyde and Professor De Meirleir for an education session or maybe two education sessions to GP'S, medical academics/researchers throughout Victoria. A few relevant senior/exec level government health advisors, minister will also be invited

    ME/CFS Vic have partnered for the first time with the GP Divisions of Victoria to bring this education session to the medical community of Victoria. Advertising will get to every GP in Victoria. Me/Cfs Vic will also be advertising widely through medical schools etc, this will take quite a bit of office and staff time over the next few weeks to strategically manage and maximize the impact of the event/s,so please leave phone messages if we do not answer immediately, we will always return your call just as soon as we can

    Partnering with GPVic is a huge milestone for ME/CFS and for ME/CFS Vic. Having GPVic actively support the session/s allows for a high level of credibility for the speakers and also the condition ME/CFS amongst the medical community. We expect a very good turn out. We also have senior/exec government health policy advisers who are interested in attending

    A flyer or flyers will be available very soon for you to take or forward to your drs
    regards Alison

    Priscilla
  5. moonchild

    moonchild

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    re. the bond study - am thrilled to see some research going on locally and desperately want this to yield something useful for us. having attended an info session about it and been hearing from people involved since, i do have some serious concerns about the way it is set up, the organisation and the way participants have been treated (including the level of understanding of the illness). however, not going to go into details on a public forum...
  6. Where is the name change coming from? I googled HGRV & the only hits other than this site was some "Eurolyme" blog.


    ps: Hi Greg!
  7. Melodie

    Melodie Guest

    Hi Alex, do you know of any cases and if so if the people concerned would want to be asked permission to have it put on the wiki.
  8. susan

    susan Senior Member

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    Gold Coast Australia
    Moonchild I agree with you on how Bond have treated sick individuals....I too wont go into my last blood test results.
  9. Megan

    Megan Senior Member

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    Thanks Alison for the info, good to hear the pollies are coming! (I hope).

    Megan.
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    I cant say the way bond treat us is good or bad. I think it depends on what your expecting. I was hoping for xmrv test but just more validation that my illness is immunological, which i have. Maybe others are going in there expecting answers and or some sort of treat. bottom line is they dont know that much about cfs, thats why they are doing this study. I know its frustrating and i want to know more too but i sit back and think to myself thats not what this study is about. U will find alot of medical people put up a wall of sorts to distance themselves from their patients, i think if they sat down and listened to all of us they wouldnt get much work done because they would be balling their eyes out as well.

    I look at it as im the vampires dinner and every few months they report back to us on how tasey we are, lol.

    cheers!!!!
  11. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
  12. alex3619

    alex3619 Senior Member

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    Hi Melodie

    I knew of one case a long time ago, and apparently they finally won their supreme court battle and got their child back - years later. This was in Brisbane. There is a wikipedia thread on this but I hve forgotten the details. I do not know if they want names listed - a child is/was involved, so privacy is important too.

    Bye
    Alex
  13. Melodie

    Melodie Guest

    Thanks Alex. I found this 7.30 report on Tahnee Johnson, mother of teenage daughter with CFS. The story finishes with Tahnee to appeal the court decision (1999). I couldn't find any further info.

    http://www.abc.net.au/7.30/stories/s21850.htm
  14. alex3619

    alex3619 Senior Member

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    Hi Melodie, in something like 2004/5 they won the supreme court case, if it was the same person. I think this is on the wikipedia under munchausen by proxy legal battles in Australia or something. Others on PR know the details, someone posted this to me a few months ago.

    Bye
    Alex
  15. priscilla

    priscilla

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    Australia - National radio interview on the topic 'Exploring ME/CFS' - August 23

    ME/CFS Australia (Victoria) is pleased to announce that we have secured a
    national radio interview on the topic 'Exploring ME/CFS'
    Those interviewed will include Mr Simon Molesworth QC President of ME/CFS
    Australia, Dr Donald Lewis (CFS Discovery) and Dr Nicole Phillips
    (psychiatrist)

    Aug 23 Mon 10-11 pm Eastern standard time, Australia

    Radio ABC Tony Delroy Nightlife http://www.abc.net.au/nightlife/

    Please forward this information onto all your networks , blogs, chatrooms ,
    facebook sites
    Regards Alison
    Health Promotion Projects

    ME/CFS Australia (Victoria)
    Ph: (03) 9791 3100
    Fax: (03) 9793 1866
    Email: admin@mecfs-vic.org.au
    Web: http://www.mecfs-vic.org.au<http://www.mecfs-vic.org.au/>
  16. Melodie

    Melodie Guest

    This is great news! Thanks for letting us know Alison. Same for the ABC radio interview on Monday night. (I wonder if mecfs/vic has the facility to record it and put on your website?)
  17. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    thanks.. something else we can add some time into the Aussie history
  18. taniaaust1

    taniaaust1 Senior Member

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    i was only kidding but i think you did understand that :) ..

    note.. my reply back was at 2.00am too :) .. maybe it needs to be added into the ME definition, doesnt go to bed till after 2.00am :p
  19. taniaaust1

    taniaaust1 Senior Member

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    I heard yesterday that Byron Hyde is going to be coming to Australia to do a lecture.. Im not sure if that is the same thing which is being talked about here or not.. but he is coming. (i'll see if i can find the link and post them).

    Im currently trying to work out if there is anyway i could go!!
  20. taniaaust1

    taniaaust1 Senior Member

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    Here you go..

    http://sacfs.asn.au/

    ....

    We need this info on the Aussie page for coming events.

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