1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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To the Aussies

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

  1. taniaaust1

    taniaaust1

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    yep... you need to stay within your limits.

    thanks it is slowly getting there :) .... Melonie thou has been the one to cop the wiki headaches today (i hope not a literal one). That wiki is so so tricky .. as some may of noticed...when one tries to do something with a page it dulipicates them rather then deletes :p
    (the wiki duplicate pages will be fixed as soon as we can)
     
  2. taniaaust1

    taniaaust1

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    :( .. i have a crappy doctor who wont support me either.. thou he implies he believes in CFS/ME.

    It is good that you found a good psychriatrist.. i wish i could find one as i have ended up with mental health issues due to the CFS/ME (i suspect i have some PTSD due to government depts and doctors on top of other things).

    I think i did have a nervous breakdown due to all the stress others put me throu... i lost the plot in the tax dept as i was too sick to be able to keep good records of a few hrs per week work i was forced by centrelink to do and tax dept then threatened to fine me etc (i couldnt produce info i didnt know and didnt have!! at the time i couldnt even add numbers etc) i ended up throwing my paperwork at them and left crying and never went back even since then (i had bad centrelink issues too).. my mental health has been terrible ever since but it was fine before with the CFS/ME.

    It was only AFTER that incident did the tax dept send me a letter saying they'd give me a hand, before that a social worker spent 15hrs with me trying to sort the mess i'd made of everything (tax stuff) and trying to get tax dept to help me with it and they completely refused and then just kept telling me it wasnt good enough (while kept sending me letters that they would fine). i just wont go anywhere near that department now, the thought stirs me up too much. Now whenever i end up too stressed, i end up hospital.
     
  3. taniaaust1

    taniaaust1

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    There would be.. during my searches i found quite a lot of doctors all over Australia who say they specialise in CFS. i was stunned to see just how many doctors there were who do here. Im yet thou to put them all onto the good doctor list as im trying to get that advocay page done first, so without others adding to it.. it will have to stay how it is for the time being
     
  4. taniaaust1

    taniaaust1

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    im cut and pasting our aussie wiki pages here.. while we are trying to fix out the mess which has happened at wiki (in case we loose them while trying to fix it)

     
  5. taniaaust1

    taniaaust1

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    Australian ME/CFS Good Doctor page
     
  6. taniaaust1

    taniaaust1

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    Australian ME/CFS History and Events
     
  7. taniaaust1

    taniaaust1

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    ME/CFS Researchers
     
  8. taniaaust1

    taniaaust1

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    http://www.vipdx.com/order/ now that a "licenced" test for XMRV and MLV's is out in America... we are needing to really push for this to be happening too in Australia.

    I want to get our advocacy page completely finished fast (it needs info we can use to link to our emails) ... so it can be being used to help people push for our government for this. i WANT that test ASAP!!

    Is it possible we can get our blood to the vipdx within 24 hrs or not??? it would be pushing it wouldnt it??? in case of delayed planes or whatever???

    I guess if we start pushing our government for a test and they dont quickly start to arrange something.. this situation would be good to go to the newspapers with!! eg Australians are being denied virus test via our government
     
  9. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Good work on the wiki Tania.
     
  10. taniaaust1

    taniaaust1

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    quite a few others have been working on it too.
    ..............

    Seeing Melodie and i have been having wiki issues Cort is going to patch in the latest version of the Wiki... so hopefully this will make it easier to use.
     
  11. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Sorry. Good work, everyone.
     
  12. moonchild

    moonchild

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    could give you some more qld names of dr's etc if you want them still...
     
  13. taniaaust1

    taniaaust1

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    thanks moonchild.. you can post the info on this thread if you want.. as right now wiki is kind of messed up and we are trying to fix it.
    ........

    for anyone who wants to learn more about the wiki http://www.vaultwiki.org/demo/
    .................

    http://www.fm-cfs.ca/support.html just ditching that here for safe keeping as it has organisations listed on it which arent on the world organisation page yet.
     
  14. taniaaust1

    taniaaust1

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    Melodie.. i cant reach you, my PR Account is being weird tonight. Half an hr ago it told me i had 33 too many messages over my limit (so i just deleted them so it is now under... is it my account or has suddenly everyone got 100 less storage space??? ..
    Now its coming up with a message when i went to pm you

    "The following errors occurred with your submission
    Melodie has chosen not to receive private messages or may not be allowed to receive private messages. Therefore you may not send your message to him/her

    If you are trying to send this message to multiple recipients, remove Melodie from the recipient list and send the message again."

    Anyway.. i wanted to tell you that i dont think you need to get the info together if you havent already, which the ABC asked you for (i think it was you????). As they have now done an article on XMRV http://www.abc.net.au/science/articles/2010/08/24/2991897.htm
     
  15. taniaaust1

    taniaaust1

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  16. susan

    susan Senior Member

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    Why must one health recovery model suit all of us. I have been reading CFS stuff and research since 1990. In all that time I have never found very many people do well on drugs or recover. However many do well on supplements as our bodies dont absorb key nutrients. ....drugs make us ill as we are chemically sensitive..

    Why cant our Govts give vouchers to people like us for vitamins as they help our basic body chemistry. It seems they can give heart and lung transplants to people costing hundreds of thousands of dollars yet a few vitamins for people on disability pensions would help lots. A friend in Canada with a different illness is allowed to apply to the Govt...Tax section I think .... to help fund his costs from tax he has paid in the pas to buy extra stuff he needs.

    To me this is a Human Rights issue.....you can be cured only if you take OUR kind of therapy....too bad if that therapy nearly kills you. Only when the drug companies own the vitamin companies which they are fast doing, will they grant us vitamins on prescriptions......then the dosage is likely to be so weak.
     
  17. Sing

    Sing Senior Member

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    New England
    Dr. Byron Hyde's talks start 9/14

    Quote
    Dr Byron Hyde, an eminent Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (M.E.) researcher and founder of the Nightingale Research Foundation will hold two seminars open to all at the UQCCR Auditorium Herston (http://www.uqccr.uq.edu.au/about-uqccr/how-to-find-us.aspx) on Tuesday the 14th of September, 12:30pm to 2:30pm and 5:30pm to 8:00pm respectively. Dr Hydes talk will cover the latest research in CFS and M.E. and will touch on the newly discovered human retrovirus XMRV, and its possible role in M.E./CFS. He will also be discussing diagnosis and treatment, and effects on children. A $5 donation (patients) and $10 (non-patients) is requested to cover venue costs for the evening session. Please RSVP Geoffrey Hallman at geoffhallmann@yahoo.com by 5pm Monday the 13th of September.

    Dr Byron Hyde and the Nightingale Research Foundation

    Dr Hyde is one of the few physicians worldwide whose practice has consisted solely of the investigation of Myalgic Encephalomyelitis (M.E.) and Chronic Fatigue Syndrome (CFS)patients since 1984. Dr. Hyde collaborated with over 100 experts to edit and publish in 1992 the first comprehensive and authoritative medical reference book on M.E. and CFS.
    In order to widen resources to investigate M.E., CFS and related illnesses,

    Dr Hyde founded the Nightingale Research Foundation in 1988 (http://www.nightingale.ca/index.php?target=home). Nightingale is dedicated to explore, understand and treat patients disabled with M.E. and CFS, fibromyalgia-type illnesses and post-immunization injuries.
    Any male, female, child or adult can have M.E. or CFS. Those who have M.E. or CFS usually get the illness between the ages of 12-55 and many children are included in the population of those with M.E. and CFS-like disease. Up to 70 per cent of people with M.E. or CFS are female. A disproportionate number of people with the condition are professionals and semiprofessionals in the teaching, medical and associated disciplines.

    The Foundation chose the Tiger for its logo since the animal is a natural killer and one of the first scientific benchmarks of M.E. and CFS was the fact that patients lacked active natural killer cells. (NRF website) Natural killer (or NK) cells are an essential part of the immune system.

    Today, Nightingales priorities are individual patient-based research with total body/brain investigation of M.E. and CFS patients as well as the development of a sophisticated database to consolidate these findings for analysis and publication.

    The uniqueness of Dr Hydes work is in its emphasis on total body mapping of all systems and organs so that he can understand the nature and complexity of the M.E. and CFS patients illnesses. Dr Hyde also manages a detailed data base of information based on his investigations into acute onset and gradual onset central nervous system dysfunction associated with fatigue and pain syndrome. This is from individual M.E. and CFS case research of over 3,000 patients and is more detailed than any other such research in North America.

    The Foundation also has a separate, longitudinal database with some records spanning over twenty years. Such resources have led to new findings about the illnesses and Dr Hyde believes the vast majority of gradual onset type CFS patients were misdiagnosed with many subsequently found to have other conditions.


    http://westside-news.whereilive.com...tional-me-cfs-researcher-to-speak-at-herston/
     
  18. taniaaust1

    taniaaust1

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    http://news.ninemsn.com.au/national/7961563/disabilities-forgotten-opposition

     
  19. During the election campaign I sent Bill Shorten (and others, but he was the only one who sent a meaningful reply) an email template that has been passed around a few disability advocacy groups (QLD Spinal injuries something or other & Queenslanders with Disabilities Network) & he had replied that he was pushing for more recognition of disability issues at a ministerial level rather than just have it as a minor part of that larger ministry & disability services reform. Alas with this hung parliament scenario everything went out the window & we don't even have a parliamentary secretary any more.
     
  20. susan

    susan Senior Member

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    I dont think there is a death knell for people with disabilities. Shorten has put too much work into this field to let it go....he has a passion for it.. It will take few yrs but the plan is out there to have people pay more on the medicare system to fund disabilities. Many carers now with adult intellectual and physical disabilities are so old that the govt is going to have to face doing something after the parents die.
     

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