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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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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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    Melonie suggested we make a wiki page for the The History and situation of ME/CFS here in Australia and im wondering if any other Aussies are interested in helping us in getting such a page at wiki going? It could be done in brief point form of events.

    i myself are only aware of a wee bit of the Australian history and of what is going on in our states. Does anyone know where to find this knowledge?? or parts of it?? The more i think of it, the more i realise im quite unaware of so much in this area.

    As far as i know.. the history here has always been quite confusing.. at least in my own state.
    .......

    if anyone has any info to go on the Aussie page.. eg dates certain definations came into play here and what the definations were and whether it was just in one state or all etc etc or other stuff.. please either start up the wiki page or post the info here so it can be added once we get a page for it started.

    thanks
    ........
    update on how this is progressing and the new page.

    It would be great to have more helping with this in anyway they want to do so. The page is coming along nicely during the past couple of days by the handful of people who have been working on it with ideas etc, if anyone wishes to check it out its at . http://www.forums.aboutmecfs.org/sh...tralian CFS ME History and Events&redirect=no (lots of areas to have info added into) but the skeleton of page is there.

    A second wiki page to link to the Australian ME/CFS history one .. which can be used for Australian Avocatcy is being put together currently (info is on this thread page 8 i think it was, and very soon to be added to another wiki page whenever someone does it).

    And people have put some good ideas to go onto in in this thread.. things just need to be added to the Australian page.
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Bond university on the gold coast last year recieved the largest grant in the southern hemisphere ( i think around 1 million) to undertake a study for a diagnostic test for cfs, this study is still ongoing and will last 12 months. Does that count for some aussie history, hopefully when the study is finished it will help rewrite the record books.

    I dont know alot about it but the dubbo study was a big study done in australia involving a viral cause.
     
  3. Melodie

    Melodie Guest

    That study does look good - and no psych stuff! Did they use Fukuda with PEM as a necessary criterion?

    Do you know if there is any chance that they might extend the study to include xmrv testing as they mentioned xmrv in the pdf version I have. Here is the article (not the pdf version):
    http://www.translational-medicine.com/content/8/1/1

    I noticed Bond Uni received a nice grant from an estate recently (for macular degeneration). http://www.bond.edu.au/about-bond/news-and-events/news/BD3_014114
     
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    they used the fukuda criteria, dont think PEM was necessary??. Initially they mention xmrv testing might happen but the last few contacts we have had with them, they say no. Maybe when this study is finished they might ask us back for xmrv testing, i hope. After reading about bond uni getting extra grants, maybe its on the cards, hopefully they can touch base with WPI and do the proper testing from the start. Its good to see aussie scientist involved as we have some of the best scientist in the world here.
     
  5. taniaaust1

    taniaaust1

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    i was looking at that study yesterday.. posted about it in another link and im sure in that study PEM was necessay to have. I will double check the source i had thou.
     
  6. taniaaust1

    taniaaust1

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    and yes.. anything big at all which we could put onto an Australian CFS/ME timeline
     
  7. taniaaust1

    taniaaust1

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    cut and pasted from my post from the other thread.
     
  8. Megan

    Megan Senior Member

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    We need more CFS and XMRV research in Australia

    Thanks taniaaust1 for starting this thread. Everything that has been happening has set me wondering about our own backyard.

    Though I am thinking more along the lines that with limited energy, we might need to be focussing more on what we want to advocate for from Australian medical and health authorities for the future, especially with the Alter paper about to come out. Though I can see that an understanding of the history may be important in that.

    Regarding what has happened to date, I did a bit of poking about on the net the other day and came up with the following:

    1) Funding for CFS research from the National Health and Medical Research Council (NHMRC) from 2000 - 2009 and projections for 2010 -2012.
    Download the spreadsheet from http://www.nhmrc.gov.au/grants/dataset/issues/chronic.php
    I'm not sure, but I think that this group is pretty much it as far as federal government funding for CFS research goes. There may be other research funded by private organisations or other organisations that is not listed. The Bond University one doesn't seem to be there.

    As you can see, the funding for CFS research is woeful at an average of $250,000 per annum. Most of this seems to be going to the work of Andrew Lloyd and someone else called Janet Taylor from the University of NSW. Cort has listed elewhere on this forum a comprehensive list of Lloyd's work. I think some of it has been good, but the problem for us is that he has taken a position against XMRV from early on. Here is a link to Janet Taylor http://www.neura.edu.au/research/themes/taylor-group

    2) I found a parliamentary question on XMRV testing that must have been asked by as CFS sufferer. Thank you whoever that was! But the answer from our Health Minister is very disappointing. http://parlinfo.aph.gov.au/parlInfo...;query=xmrv;querytype=;rec=2;resCount=Default
    I feel annoyed about this one as the answer suggests we should have no entitlement to testing unless there is a prospect of treatment. Surely people are entitled to know whether they are infected or not regardless of whether there's a treatment?

    3) I looked on the new CFS/ME Australia website under the research section. Aside from the Bond University study it lists research at Murdoch University that I found bizarre. Someone there is studying whether computers, particularly 'second life' is helping us with our social isolation. How about research for a 'real' life instead of a 'virtual' one !! :confused:

    4) There CFS society also lists the Alison Hunter Memorial Foundation (AHMF) http://www.ahmf.org/research.html. I have not read their website properly but it looks like they have funded some CFS research conferences in Adelaide. I recall having heard that there has been some research about CFS going on in Adelaide in the past - perhaps someone else knows more about this?


    I can't find anything on XMRV research. We have leading medical research institutions in this country, WHY NOT!
     

    Attached Files:

  9. Megan

    Megan Senior Member

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    The Bond University study does look good, based on the article you have posted Melodie. I hope that they do test these people for XMRV, especially as they have found low NK cell function - I thought that's what Judy M has been talking about too. I wonder if we could ask our CFS socienty to request that they include XMRV testing in this study? Though of course we would need to know that they had the proper testing methodology or it would just work against us - maybe they could collaborate with the WPI? Would also need to know that they were using PEM.
     
  10. alex3619

    alex3619 Senior Member

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    Hi Megan

    I have sent three separate emails to the health minister on XMRV, with a cc to almost every health minister and shadow health minister in Australia for the most recent email. I am planning on doing it again after the Alter paper is released, along with some cost estimates - what delay will cost us (many hundreds of billions or more, potentially). It is good to see that testing is covered under medicare, but we still need a path lab that will do it. I only hope this extends to anti-retroviral treatment including Ampligen, but the way things work here is that these drugs will have to be separately approved in Australia to go under subsidy.

    The date on the question indicates I didn't cause this parliamentary question however, as my email was in October. Peter Dutton is the shadow minister for health and I think he was cced on my email to Nicola.

    Bye
    Alex
     
  11. alex3619

    alex3619 Senior Member

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    Hi

    I applied to be part of this study, but I couldn't attend their info meeting (I was too ill) so I missed out. However, sometimes I get emails. This one was dated 5 August. I guess I am on some of their mailing lists, but not on others. Let me state that if I receive, by accident or otherwise, any emails that contains what I consider to be sensitive information, it will not be passed on to PR or will be edited.

    Bye
    Alex

    Dear Everyone,

    I am pleased to report we have completed the 6 monthly blood tests for the SE QLD Bond University Area and the 0 month blood test for the Darling Downs Area. In the coming months (August- September) we will complete the analysis of this data and then be able to report back to you.

    I am sorry that I have not emailed you all in the past two weeks, however I have had the QLD Smart State Representatives visiting our research laboratories as they wanted to look at our progression with the CFS Project. It appears we are going along fine. In addition, Bond University also hosted the Board of Directors from the Alison Hunter Memorial Foundation and this visit also went well.

    Finally, this week Ekua, who is one of the researchers on this project, left for Kobe ( Japan) where she will present some her research findings. These results are promising and I guess when we conduct more tests later this year we will know more.

    I hope this email reaches everyone that is participating in this study, however if you know someone that does not have email and is par the study can you please pass this email onto them in hard copy.

    I will be back next week to give you another up-date.

    Best wishes and please take care.
    Sonya and the research team

    Dr Sonya Marshall-Gradisnik
    Associate Professor Biochemistry
    Faculty of Health Sciences and Medicine
    Bond University
    ROBINA
    4229

    Email: smarshal@bond.edu.au

    Ph: 61 7 5595 4447

    Fax: 61 7 55 95 4122
     
  12. alex3619

    alex3619 Senior Member

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    Hi

    Please note the Peter Dutton question in parliament was asked in February, and answered in May. These things take time.

    Bye
    Alex
     
  13. Megan

    Megan Senior Member

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    Alex, my reading of the answer is that a test will not be covered under Medicare, or otherwise procured, unless they first see that XMRV is a proven cause of CFS and that there is a treatment for it. Logically this will take years for the scientific debate to finish, so as far as I can see that leaves us wil no test unless a lab decides to do one of there own accord and we are prepared to pay for it. I think, once the Alter paper comes out, that testing is something we and our advocacy organisations (?) need to be pushing loudly for.

    Thanks for the efforts you have gone to and the info on the Bond study.
     
  14. taniaaust1

    taniaaust1

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    oh lol Megan.. you've put my brain into info overload.

    Melonie is the one who suggested for me to start the thread (i didnt even have my brain in gear enough to think to start a new thread so everyone could see it, thanks Melonie).

    Wow thanks

    Im not going to be able to absorb the info till we end up getting it on onto some kind of neat and tidy time frame so my brain can easily put things together. Maybe those who want to should just start throwing the info on a wiki page (or others can put it here) and we can tidy it up and add things and take things away as we go, before all the info becames a heap here. Seems kind of strange to start it with so little knowledge but i guess due to all our brain fog it may be the best way to start getting the info together in easy to see way of the things which have been put forth and not yet.


    that is a good start with the info and what is going on. I didnt even know what our national health system was called **blushes** . So im really starting at the basics lol.

    1/ umm Dr Lloyd getting the research money.. He's the one whos shifted views and taking a CBT Wessely school view. Apparently he got disinlussioned in the past when studies werent finding what was causing CFS/ME. He's quite upset some CFS/ME patients including ones who have seen him with his views.

    The Queensland goverment is putting a lot of money into funding CFS/ME research and it appears has pulled it out of other departments. Many CFS/ME studies take place in Sth Australia too.. i dont know where they get their money from (maybe some comes from the SA government?)

    2/ That address i think should be linked to on the wiki.. good to hear that medicare will end up probably covering XMRV tests sooner or later. I know Alex sent out a ton of mails to government peoples/parliment members. Who knows.. maybe one of his emails started that question being brought up in parliment. (thanks Alex)

    3/ The study you found weird :p , sounds like it may be one i partook in last year??? How the social insolation we find ourselves in may be helped? Social Insolation is a big issue for many with CFS/ME when one is bedbound or housebound. (I'd rather the government read a study in which having a computer helped our well being so recommending computer funding for us :p :p then be told to do CBT and GET).
    Isolation IS an issue which many of us face.

    4/ The Alison hunter memorial fund has been a big player in part of our history.. put in A LOT of money and has been about for a very long time.. They've helped with education of doctors (medical CFS conferances.. not just in Sth Australia) and also have held general public CFS/ME conferances.. both in SA and in other states too. They have funded studies. I went looking the other day to see if this group who has been so important in our past was still up and running .. their site had moved.. and someone the other day has told me they are still about.
    Ive seen in the past that they can go quiet for a couple of years.. and then do something big for the CFS field. Ive no idea what they currently are doing or planning or funding. (that is something someone could try to find out).

    Anyone want to volenteer to email them and ask to see what they are doing nowdays or are planning to do and report back? (i put their recent web address into the wiki CFS Organisation page the other day).

    (sorry for the long mail to those who find it hard to read).
     
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Hi all, Im in the study and before we were accepted we had to fill out a questionaire (my take on it, that it was the fuduka method), for the life of me i cant recall anything directly asking us about PEM but i think there was questions on how we recover from increased activity etc. Personally i think there were too many question which i think they could limit to just a few. I think after ruling out obvious medical conditions like thyroid, anemia etc i think ongoing fatigue or feeling unwell for 6 months with reduced physical ability compared to pre-illness, poor sleep quality including insomnia, general aches and pains, malaise/brain fog. I think having most of those symptoms would catch most of us with cfs and there is plenty of other symptoms but they would fill a few pages.

    I think when someone feels unwell for a long period of time and their dr cant find anything on standard blood tests, patients generally can diagnose themselves with cfs. I think having a test like poor natural killer cell function helps give us validation that its not a psychological illness and is a reason for why some of us who get a virus like ebv etc never seem to have recovered from it because our immune systems cant supress this virus and weakens our system and we become prone to a host of other infections as well.

    http://www.sswahs.nsw.gov.au/sswps/
    For other aussies who cant get in the bond study, there is a lab in sydney that has a test for natural killer cell function and u can get any pathology lab to send your blood to them for testing but has to be prearranged as the blood has to be tested within 24hours of being drawn.

    cheers!!!
     
  16. taniaaust1

    taniaaust1

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    http://parlinfo.aph.gov.au/parlInfo...;query=xmrv;querytype=;rec=2;resCount=Default "
    i thought that reply was quite good. If its shown we have it and treatment is appropriate, the testing will be included under Medicare. They seemed to be postive towards the finding of XMRV in CFS/ME patients (no dispute)... and as yet it isnt known if it is the cause of our issue (even the WPI say that). All that is known is that many of us have it and our government dont seem to dispute that probability.
     
  17. alex3619

    alex3619 Senior Member

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    Hi Megan

    My reading of Nicolas answer from Hansard indicates that it is up to the doctor: if the doctor feels it is necessary, it is covered. So find a good doctor.

    Bye
    Alex
     
  18. taniaaust1

    taniaaust1

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    Someone could do try to get another question put forth to parliment.. asking What the government is doing as far as funding XMRV research in case its causitive to CFS/ME.
     
  19. taniaaust1

    taniaaust1

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    maybe once we've got the Australia CFS/ME history page up.. we could form an PR Australian Avocatcy group to target such things.
     
  20. taniaaust1

    taniaaust1

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    Megan.. even if it wasnt found to be the actual cause of CFS/ME, if it was found to be high in us and a risk due to cancer or whatever (or giving us more symptoms), it then would be appropriate treatment to have this treated.. hence medicare then should come into play.

    What we do need to push for is our government to put money into XMRV research till enough is known .. better still.. if there is a CFS/ME researcher we trust who would be willing to work with the WPI.. maybe we could also at same time encourage the government to fund that researcher.

    Maybe CFS patients need to start doing what some governments are doing (eg America) and be biased with it comes to CFS and make sure money goes to the right places.
     

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