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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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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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    ohhh LOL.. i think i need to add blindness to my list of CFS/ME symptoms. i somehow completely missed seeing the Australian Advocacy page Melodie has put up http://www.forums.aboutmecfs.org/sh...view Project:Australian Advocacy Contact List

    Thanks greatly :) . i really this is will help us (all the Aussies out there).

    ohhh.. and i missed seeing half the new posts on this thread too.. Yeah definately should add blindness to that list :p :p
     
  2. Megan

    Megan Senior Member

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    I think the single most important piece of research is the one we are waiting on, the NIH Alter/Lo paper. If that is as strong as we expect it to be, it will make everything else redundant. It has been posted elewhere on this forum that PNAS have stated it will be out before the end of August. If the article is not open access then you can ask someone with university library priveleges to get you an electronic copy. I know someone who has this so I can get copies straight away (could probably PM them to you). Otherwise you can use abstracts, which are available on the Pubmed website.

    Given that this is so close it makes sense to wait until we get hold of that paper and attach it to any correspondence we have with politicians.

    When talking to doctors and scientists I wouldn't send google articles, blogs or news articles. Such people will respect journal articles the most. Maybe some journalists, or perhaps politicians, would be interested in some good quality media articles such as the WSJ articles, but I wouldn't be using lesser sources as I feel it would detract from the credibility of my letter.
     
  3. Melodie

    Melodie Guest

  4. Megan

    Megan Senior Member

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    Thanks for the info Melodie. Such wiki pages are a new concept for me, I have heard of them before but never used one. I guess I better try and keep up with the times! Amazing what I have learned to do with a computer since reserching the CFS debate on line. Even learned to use google translate!

    BTW, did you guys know that you can often get online access to journal articles via your public library or state library websites? Of course if you can access a university library that's way better. I try and get what I can through the municipal library sites and only annoy my university friend if I have to.
     
  5. Melodie

    Melodie Guest

    I have yet to learn google translate. About the PNAS copy - if it doesnt appear courtesy of someone here on PR, sure I can ask my local library. Cheers.
     
  6. taniaaust1

    taniaaust1

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    update.. Melodie did a great job and fixed my stuff up up :)
     
  7. taniaaust1

    taniaaust1

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    As XMRV may not be causitive to our illness... i think other references if they are good ones may still be useful even after its proven that XMRV is found in most with CFS/ME.

    This is just my opinon but i dont think everyone should ever stop avocating just cause something is coming out. Right now is a great time to advocate as everything is still up in the air and no one does know just how serious XMRV is in CFS/ME.

    (sorry off my head right now i cant thou think of any good references i'd put into a letter.. except maybe the wall street journal one about the whole XMRV saga... while that is all going on.. great thing to use for advocacy and need for more CFS/ME funding into this illness etc.

    I'd also add in there good references to how serious this illness is, so if the XMRV thing dont prove to be serious in us.. not causitive..we've still got across to those we are mailing that this is a serious illness needing attention).
     
  8. taniaaust1

    taniaaust1

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    Id always been interested in the proper wikipedia and wanted to contribute things to that at times.. but never was game to ever get into the discussions there to do anything. At least with this here, we are all used to stuffing up :)

    ahh thanks. I'd never thought about trying to get full articles throu there .. wow.. that is so great as i so often want to read the things in full and are stuck with short abstracts.
     
  9. Megan

    Megan Senior Member

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    I think one of the main things we need to dicuss on the wiki site is what we want to be asking for and who we should be asking it from. I'm not sure that we are really clear at this point.

    I know for example that XMRV testing is one of the most important things I want, but then there are no validated tests yet. More CFS research is another big one for me. Both of these are clearly issues to be pursued through politicians. I would like more publicity/education, so journalists would be helpful but I also don't want the wrong sort of coverage - I wouldn't want scare tactics to result in people not wanting to know us for fear of catching it!

    Letting our CFS doctors know our concerns and telling them of of conferences such as the Bond one, may be just as effective a strategy at this stage, if not more so, than letter writing. I have already done this with my own CFS doctors. I know one of them has already spoken to a prominent scientist about the XMRV. I believe Ministers are taking serious advice from such scientists already.

    Contacting the CFS society about our concerns is another possibility.
     
  10. taniaaust1

    taniaaust1

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    thanks Ash. feel free to add what you know onto the Aussie wiki pages if you'd like, that info you mentioned should be there. If thou it isnt the current defination being used here in all states.. could you make a note of that at the bottom of the addition so people arent confused.

    I didnt even know that the CC CFS defination was modified for use here?? (maybe a modified version of that is the defination that the SA government was using at some point?.. they put out their own CFS book) .. just after that thou.. i thought the CC CFS defination being encouraged to be used by medical professionals in SA was the full CC CFS one (cause the the SA assoc. were sending out the CC CFS overview book to be read and used).
     
  11. alex3619

    alex3619 Senior Member

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    Hi

    Going back to an earlier discussion, I now think Nicola Roxon's comments that refer to a medicare code is about the doctor's appointment being covered by medicare, not the XMRV test itself. The test is probably not covered - not that I regard that as a big problem. I want to know if I am XMRV positive more than I am worried about cost, even if I am financially challenged.

    bye
    Alex
     
  12. Megan

    Megan Senior Member

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    I realise I'm pretty focussed on the XMRV thing, I did not mean to imply that this was all that was relevant. I was really just trying to say to use the best quality sources possible, even if it's not XMRV related. Also the sources may need to vary depending on the audience.

    It's a good point that news media articles or other publications on the seriousness of CFS are very useful and important. I find that even doctors who believe it are still not aware of how bad it is.
     
  13. taniaaust1

    taniaaust1

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    Everyone always has their own areas the want to see pushed as there are so many different things needed. Maybe someone wants to write one or two paragrahs on the Advocacy page about the different areas ones with CFS are currently strongly advocating on.. eg the things you mentioned.. CFS funding, more research etc ... yeah no good pushing here that we want to be XMRV tested right now before one is validated and accepted. .. more CFS research or CFS/XMRV research needs to come first. Why isnt our government researching this XMRV/CFS?

    A few paragraphs will help those with CFS who have trouble thinking, realise better where their advocacy may be most useful. (maybe the who's to avocate to for certain things may be helpful too).

    Maybe XMRV and the advocacy going on about that.. could have its own little section on the page seeing this is one of the biggest things going on right now.
     
  14. taniaaust1

    taniaaust1

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    Yes.. i'd been thinking about that too and how that should be mentioned on the advocacy page. With either the list of Australian state CFS societies to contact.. or just a link to that other thread which ive already put them all on. (the CFS Organization wiki page)..

    being Australian (so at start of alphabet).. right now they are at top of the list on the CFS Organisation page, so easy to find for anyone who clicked a connected link, if that page was just linked to the Aussie Avocate page. .. at later date thou.. when more Organisations are added to that other world organisation page.. it may make them far easier to find if the Aussie ones were put onto the Advocacy page.

    i suggest at this point for people to get the Aussie societies info, to just to put a link to that CFS Organisation page (till at later date we may need to change things as things grow)
     
  15. taniaaust1

    taniaaust1

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    So frustrating.. i even have that issue with one of my CFS specialists (i wont mention his name as he is in many ways a good specialist), but he still thought i could be doing more exercise. (he was telling me a while back, how he runs 10kms AT A TIME i think it was, several times a week and it keeps him fit and healthy and just how good exercise is for a person.. i felt like his comments were trying to imply something to me).

    Today.. i educated a little a specialist who does have some CFS patients.. on POTS. He hadnt heard of it before.. fortunately i had a good article on it with me (from the CFIDS assoc. on that 70% with CFS/ME have POTS), which he was interested in reading so i left it with him.

    Its hard.. not only do we have to educate our doctors about CFS/ME but also about all the other medical conditions that come along with it.
     
  16. taniaaust1

    taniaaust1

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    Now im confused.. arent all doctors appointments covered some by medicare to a degree no matter what one is seeing the doctor for??


    the relevent part of the paraliment statement said "(c) If such a test were generally considered by the medical profession as necessary to the appropriate treatment of patients then a Medicare benefit would be payable under item 69494 of the Medicare Benefits Schedule. "

    It does say test in that quote.. (but who knows.. maybe im taking things too literally like i often do).
     
  17. taniaaust1

    taniaaust1

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    Subject Heading Ideas needed... What big subject heading should the Australian Red cross situation with CFS/ME come under?? Currently there isnt a subject heading there to put something like that under and i cant think of a heading to use. Any ideas? of a heading to which all kinds of medical stuff to do with CFS/ME including this can come under?
     
  18. alex3619

    alex3619 Senior Member

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    Hi Tania

    No, not everything is covered by a doctor, it is only covered if the HIC says it is. When a doctor treats CFS using non-standard treatment, or runs non-standard tests, and that was the point of the visit, then technically the entire visit is not covered by medicare, and if the doctor claims it then the doctor can be prosecuted for insurance fraud. This is one method they use to attack CFS doctors. My own doctor in 1993 (17 years ago now, maybe things have changed and I just haven't caught up but I tend to doubt it) was prosecuted this way. CFS is untreatable, therefore any treatment is fraud is a standard insurance claim.

    Bye
    Alex
     
  19. Melodie

    Melodie Guest

    Item 69494 is a pathology test: "For the detection of a virus or microbial antigen for microbial nucleic acid not elsewhere specified. One test." (not consultation)

    That was by phone but on page 6 at (c) on the Supplements to the Medicare Benefits Schedule:

    http://www.health.gov.au/internet/mbsonline/publishing.nsf/Content/EB0F90409D2F4E5ACA257518007B0F89/$File/200805.pdf

    "PA.2 Exceptions to Basic Requirements
    Services Where Request Not Required
    A written request is not required for -
    (c) That is specified in one of the antigen detection items 69494, 69495 or 69496 is considered necessary by the specialist pathologist as a consequence of information provided by the requesting practitioner or by the nature or appearance of the specimen or as a consequence of information resulting from a pathology service contained in items 69303, 69306, 69312, 69318, 69321, 69345. Please note: a written request is required for a service contained in items 69303, 69306, 69312, 69318, 69321, 69345 or for a service contained in items 69494, 69495 or 69496."

    It may be mentioned elsewhere on that pdf. It comes up elsewhere when googled.
     

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