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Australian Advocacy Contact List

Discussion in 'Patient Data Repository & Treatment Review Project' started by Melodie, Aug 16, 2010.

  1. Melodie

    Melodie Guest

    * More research funding into ME/CFS in proportion to the severity and prevalence of the illness
    * Urgent research funding into ME/CFS and it's link to XMRV/HGRV. And the epidemiology of HGRV.
    * Access to XMRV/HGRV testing
    * Doctor Education
    * More Doctor medical training into ME/CFS and its coexisting illnesses
    * Public Education
    * More doctors and treatment centres
    * For getting certain consessions into some states, not all are equal eg http://www.industry.nsw.gov.au/ener...o-will-qualify-for-the-Medical-Energy-Rebate?

    Important to include in all letters or contacts information on seriousness of CFS, its symptoms and impact on peoples lives. eg include a news article on someone with the illness, or have yourself or a patient willing to talk about it. If this is not done then they won't appreciate the seriousness of CFS or the meaning of breakthroughs such as XMRV/HGRV.

    There is also a need for Advocacy to be directed towards America in which there is a coverup of ME and confusion with CFS. This affects us over here in Australia as many of our doctors turn to the American CDC site, to look things up including on the subject of CFS. This confusion also affects most of the sciencific studies too which come out, so confuses any doctors here who take a look at CFS research. It makes no sense for an illness to be completely different things, due to different definations etc, all over the world or for ME to be hidden. For more on the American Centre of Disease Control (CDC), ME coverup http://c4jrme.110mb.com/CurrentTopics3.htm

    National Health and Medical Research Council http://www.nhmrc.gov.au/about/index.htm
    The National Health and Medical Research Council (NHMRC) is Australia's peak body for supporting health and medical research; for developing health advice for the Australian community, health professionals and governments; and for providing advice on ethical behaviour in health care and in the conduct of health and medical research. National Institute of Clinical Studies (NICS) has been incorporated into the NHMRC.

    * CFS funding http://www.nhmrc.gov.au/grants/dataset/issues/chronic.php 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 Janet Taylor from the University of NSW and also to of Andrew Lloyd. (Andrew Lloyd is well known in the ME/CFS field and has done some good studies but also has taken a view against XMRV from early on and seems to have shifted and is taking on some psychological view).

    NHMRC research funding for other illnesses can be found on this link http://www.nhmrc.gov.au/grants/dataset/issues/index.htm. Interesting comparisons can be made if you download the, 'Nervous Systems Neuroscience Disorders by Type' spreadsheet, or any others. For example, allocations for 2009-10 show MS has been allocated $7.8million dollars, migraine research has $1.9m. CFS has $208,000, though it appears actual expenditure was 325,000.


    Health Minister: http://www.aph.gov.au/house/members/member.asp?id=83K
    Shadow Minister: http://www.aph.gov.au/house/members/member.asp?id=AKI
    Ministry: http://www.aph.gov.au/library/parl/42/ministry/ministry.htm
    Shadow Ministry: http://www.aph.gov.au/library/parl/42/shadow/index.htm
    Federal Parliamentary Directory: http://australia.gov.au/directories/parliament-of-australia-contacts


    Health Minister: http://www.parliament.nsw.gov.au/pr...b7d63557380b4bcc4a25672e0002e1dd?OpenDocument
    Shadow Minister: http://www.parliament.nsw.gov.au/pr...517fd3b146c5aa674a25674500016598?OpenDocument
    Ministry: http://www.parliament.nsw.gov.au/prod/parlment/members.nsf/V3ListCurrentMinisters
    Shadow Ministry: http://www.parliament.nsw.gov.au/prod/parlment/members.nsf/V3ListCurrentShadow
    All Members: http://www.parliament.nsw.gov.au/prod/parlment/members.nsf/V3ListCurrentMembers

    Health Minister: http://www.parliament.vic.gov.au/members/id/1583
    Shadow Minister: http://www.parliament.vic.gov.au/members/id/155
    Ministry: http://www.parliament.vic.gov.au/members/ministers
    Shadow Ministry: http://www.parliament.vic.gov.au/members/shadow
    Greens: http://www.parliament.vic.gov.au/me...d=a&party=GRN&house=MLC&gender=&up=YYYY-MM-DD
    All Members: http://www.parliament.vic.gov.au/members/

    Ministry: http://www.parliament.qld.gov.au/view/legislativeAssembly/members_ministers.asp
    Shadow Ministry: http://www.parliament.qld.gov.au/view/legislativeAssembly/members_shadow.asp
    All Members: http://www.parliament.qld.gov.au/view/legislativeAssembly/members_current.asp

    Health Minister: click on the Ministry link below, then click on the Health Minister's name to get details.
    Ministry: http://www.parliament.sa.gov.au/Members/Ministers/Pages/Ministers.aspx
    Shadow Minister: click on the link below to ascertain the Shadow Ministers name, then click on the 'All Members' link and find Ministers name to get details.
    Shadow Ministry: http://www.parliament.sa.gov.au/Members/Ministers/Pages/gateway.aspx
    All Members: http://www.parliament.sa.gov.au/Members/Pages/List of All Members.aspx

    Health Minister: click on the Ministry link below, then click on the Health Minister's name to get details.
    Ministry: http://www.parliament.wa.gov.au/web...Members - Ministers&Parliamentary Secretaries
    Shadow Minister: click on the Shadow Ministry link below, then click on the Shadow Health Minister's name to get details.
    Shadow Ministry: http://www.parliament.wa.gov.au/web/newwebparl.nsf/iframewebpages/Members - Shadow Ministers
    All Members: http://www.parliament.wa.gov.au/web/newwebparl.nsf/iframewebpages/Members

    Health Minister: http://www.parliament.tas.gov.au/ha/obyrne/obyrne.htm
    Shadow Minister: http://www.jeremyrockliff.com.au/
    Ministry: http://www.parliament.tas.gov.au/HA/Cabinet.htm
    Shadow Ministry: http://www.parliament.tas.gov.au/ha/LiberalCab.htm
    Greens shadow Ministry: http://www.parliament.tas.gov.au/HA/GreensCab.htm
    All Members: http://www.parliament.tas.gov.au/HA/HAMembersBio.htm

    Ministry: http://notes.nt.gov.au/lant/members/Members1.nsf/f802398987230d836925637900163ba2?OpenView
    Shadow Ministry: http://notes.nt.gov.au/lant/members/Members1.nsf/Shadow Ministry/By Name?OpenView
    All members: http://notes.nt.gov.au/lant/members/Members1.nsf/49bd8676b89a70656925636c0021e38a?OpenView

    Health Minister: http://www.parliament.act.gov.au/members/162.asp
    Shadow Health Minister: http://www.parliament.act.gov.au/members/165.asp
    Ministry: http://www.parliament.act.gov.au/members/ministerial-responsibilities.asp
    All Members: http://www.parliament.act.gov.au/members/index.asp?assembly=7


    News Reporters
    Ring with Big news .. eg major study just been released
    note.. When you ring a reporter, they may or may not have email access at the time, so be prepared to give all details over the phone rather then just telling them you will email details of a hot news story happening or about to occur. eg Government overseas just about to give a reporters telebriefing on CFS/XMRV.

    ABC news (Sydney and national) tvnews@news.abc.net.au
    Channel 7 news News Tips 03 9697 7877, Adelaide Newroom (08) 8342 7700
    Channel 9 news Newsroom Direct Line (08) 8267 1234
    Channel 10 news news@networkten.com.au 24 hr hotline 1800 100 010

    Today Tonight (channel 7)
    Today Show (channel 9) today@nws9.com.au
    Catalyst catalyst@your.abc.net.au

    ABC Health Report: http://www.abc.net.au/rn/healthreport/contact/
    ABC All In The Mind: http://www.abc.net.au/rn/allinthemind/contact/
    ABC Okhams Razor: http://www.abc.net.au/rn/ockhamsrazor/contact/
    ABC Radio Life Matters: http://www.abc.net.au/rn/lifematters/contact/

    Major Newspapers
    The Australian: http://www.theaustralian.com.au/help/contactus
    The Age (Melbourne): http://www.theage.com.au/contacts/
    The Herald Sun (Melbourne: http://www.heraldsun.com.au/help/contactus
    Sydney Morning Herald: http://www.smh.com.au/contacts/
    Adelaide Advertiser: http://www.adelaideadvertiser.com.au/contactAdelaideadvertiser.html
    Sunday Mail



    There are many Organisations in Australia which can be contacted or joined which advocate for those with ME/CFS.

    ME/CFS Association of Australia Ltd www.mecfs.org.au
    Alison Hunter Memorial Foundation http://www.ahmf.org/
    ME/CFS Australia (SA) http://sacfs.asn.au
    ACT ME/CFS Society Inc www.mecfscanberra.org.au
    ME/CFS Society of NSW www.me-cfs.org.au
    ME/CFS Australia (Victoria) www.mecfs-nt.org.au
    ME/CFS Australia (Northern Territory) http://www.mecfs-vic.org.au/welcome-...hern-territory
    ME/CFS/FM Support Association QLD Inc www.mecfsfmq.org.au
    ME/CFS Society of WA (Inc) www.mecfswa.org.au
    ME/CFS/FM/MCS Support for Tropical North Qld. http://tnq-support-group.net/index.html

    http://www.forums.aboutmecfs.org/content.php?208-Standing-Up-For-ME-CFS-Rivka-Takes-on-Washington (We havent currently got any Aussie examples of where anyone has videoed their one person demonstration...but this is a great example of what one person can do!!)

    Material you may want to include in your Advocacy
    Aussie ME story http://au.lifestyle.yahoo.com/who/latest-news/article/-/6981932/too-tired-to-live/ *
    Aussie ME story http://www.watoday.com.au/wa-news/thedas-desperate-fight-against-a-chronic-killer-20100301-pcvv.html *
    1st XMRV WPI study (Lombardi) http://www.sciencemag.org/cgi/content/abstract/1179052
    wall street journal on 1st XMRV study, XMRV and prostate cancer http://blogs.wsj.com/health/2009/10...nks-prostate-cancer-chronic-fatigue-syndrome/
    2nd XMRV/MLV study (Atler) http://www.pnas.org/content/early/2010/08/16/1006901107.abstract
    3rd study (soon to come fully out)
    Aust. Redcross about blood ban http://www.donateblood.com.au/news-...events/blood-service-updates-cfs-donor-policy
    Wall Street Journal ME/XMRV/MLV http://blogs.wsj.com/health/2010/08...is-mark-the-spot-in-chronic-fatigue-syndrome/
    Wall Street Journal ME/XMRV/MLV http://online.wsj.com/article/SB10001424052748703846604575447744076968322.html
    FDA Questions and Answers on MLV. http://www.fda.gov/BiologicsBloodVaccines/SafetyAvailability/ucm223232.htm *
    Testing of MVL and XMRV, we havent yet got http://www.vipdx.com/docs/Test_Requisition.pdf
    "Findings by Reno Scienctists" talks about clinical trial etc http://www.rgj.com/article/20100816/NEWS/100816069/1321 (great article thou need to point out if using it.. that the FDA findings are now out and include that too)
    Corts Overview, Four Viruses, The Alter Paper Arrives http://www.forums.aboutmecfs.org/content.php?213-Four-Viruses-The-Alter-XMRV-Paper-Arrives
    Unofficial PR poll on prevalence in families http://www.forums.aboutmecfs.org/sh...-Family-Member-ME-CFS-Prevalence-Poll-Take-II
    "Second Study Supports Viral Link to CFS" http://news.sciencemag.org/sciencenow/2010/08/second-paper-supports-viral-link.html (good article to attach to any advocacy for more funding!)
    XMRV and prostate cancer http://www.plospathogens.org/article/info:doi/10.1371/journal.ppat.0020025
    Article XMRV/CFS http://edition.cnn.com/2010/HEALTH/.../index.html?hpt=T2#fbid=lYGVLEGE2dQ&wom=false (very good article content to use for most things thou uses heading "chronic fatigue")

    * read the article clearly to be sure it is what you want to have all included. Mentions something controversal or tends to play something down.
  2. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    i just used the term CFS/ME Organisations as a heading title on page rather than the usual aussie term ME/CFS, so it creates a link to the CFS/ME Org (world wide) wiki page.
  3. Melodie

    Melodie Guest

    Looks nice with the colour! So do you think it will be worth a try making new pages and then linking them into the book properly, and if it will be possible to delete the old ones when one of us has time. If so do you want to keep the title CFS/ME rather than ME/CFS? ( i am still intending to look up vault wiki when I can).

    BTW - it says "this page is achapter inthe book..." on the history and events page so does that mean the pages we made are chapters and they can be divided up into pages do you think?
  4. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    thanks.. :)

    i personally think a ME/CFS title is better for Australia stuff.

    Im very confused over the book stuff.. do you mean delete what we've already done???

    If something was broken down into very wee pages... it would be very time consuming for some to read. (i only had a dial up connection so a page takes time to load). Im not at all sure if im understanding what you mean right.

    If pages get too big thou, yeah i agree they will need to be broken down and the info put onto other pages, as most here struggle with too much info. I think the pages on the CFS wiki should be a lot shorter then on the normal wikipedia people use, so our brains can better cope.

    I also like the idea of making the pages into a book. (but that would have to be up to you as i dont understand that stuff a bit :p ) .

    im struggling to understand.. sorry (im sure it isnt you but my own brain)
  5. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    frustrating.. i just went to check dinner as it should of been almost cooked and im hungry.. but just found out i'd turned wrong stove element on so nothing is cooked. i was distracted by the wiki lol
  6. Melodie

    Melodie Guest

    No im sure its me! The reason for my major stuff up ws that i ws trying to make the pages part of a wiki book with all the aussie pages in it. but instead of practising in the sandbox which is in wiki home base i connected the existing page(s) in the wrong way.as you know.so if and when i try and fix it i will make the title ME/CFS as you said. i didnt mean delete the beautiful work you have done. and the new info is good btw.I need to try reading vaultwiki (manual) when feeling better.

    I agree about the page length.I think i got it wrong about a smaller category. The pages we have are called chapters. Sorry for confusing you :tongue:
  7. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    OHHH vaultwiki .. cort sent me the link to that today. It's soooo overwhelming, i dont think my head would cope with it unless i didnt have CFS/ME at all ie till a cure is found :p . A computer whizz with a good head would probably struggle with it!!

    im thou at least understanding you now :)

    yeah.. each page we create, i think is called a "chapter". Actually the more i think of this, the more fun it seems creating a book.. that is IF we can work out how to do the book thing :p
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    what bout a list of useful doctors in each capital city and major regional city, and broken down into 2 types, CFS SYMPATHISES- these guys believe in cfs but dont know much about it but will help with symptom management like sleep and pain medication and basic testing and the second type we call CFS GO GETTERS- they have a high knowledge of cfs and cfs history, know all about different tests to run for differing viruses etc as well as general immune system tests, depending on what they find will prescribe antivirals, antibiotics and antifungals. There seems to be a few aussies on here without regular docs. All i can say is that without my regular doc i wouldnt sleep and struggle to support my family. Its nice to ask for sleep meds no questions asked because he knows this illness is chronic and a 2 week course of sleeping tablets isnt going to fix anything. Someone who also think out of the box and is in the loop with the cfs community.

  9. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Hi heapsreal.
    I started up a wiki good doctors page quite some time ago but no one has really added to it.. the page is meant to be for worldwide but if it got too big of cause it would probably be broken down into countries. Check it out and add any good CFS doctors you know of there (not necessarily a CFS specialist but ones also who are willing to learn about the illness and try to treat patients) http://www.forums.aboutmecfs.org/sh...atment Review Project:CFS ME Good Doctor List

    We can link that page onto our main Australia page
  10. Megan

    Megan Senior Member

    Just getting the hang of this wiki business. I edited a number of the politicians contact links today as a number of them hadn't copied accross properly. I think they are all working now (so long as the truncated version is not on the edit page they work OK). I also added a list of all members for each state in case anyone wants to send a letter to their local MP.

    Also for S.A. and W.A. it is not possible to bring up the Miniter's home page directly as it still uses the same URL as the Ministry/Shadow ministry list. So I have just included the Ministry and shadow ministry list for these, with instructions on how to get the ministers home page.
  11. Melodie

    Melodie Guest

    Tania, I am just putting these here all in one place to be put on the wiki when one of us has time (I wasnt sure where you wanted them to go):

    NSW medical energy rebate:


    Victoria Medical Cooling Concession brochure:

    Victoria Medical Cooling Concession Application Form:

    Note: Please phone them to see if this form is current.

    " Are any of you getting this chronic illness (heat intollerance) electriticity discount? Ash.. if you are about, do you know about this or can give me any info on this?"

    Queensland Medical Cooling/Heating rebate

    bummer about it is a GP can't sign off, you need a specialist & with no specailty looking after ME/CFS, especially in hicksville I can't get it

    UKxmrv put this on the to the aussies thread. It could be put up for history.

    " At some stage ANZMES stopped being a Australia New Zealand society and became just a NZ one?

    Here's a comment to a branch one in Victoria"


    Its about : Victorian Branch newsletter / Australian & New Zealand Myalgic Encephalomyalgic Society

    from 1981.
    Tania, Here is what is on the page (The newsletter is held in the National Library of Australia main reading room (Australian Collection)):

    elected new items on display in Main Reading Room

    APA Citation

    Australian and New Zealand Myalgic Encephalomyelitis Society. Victorian Branch. 1981,
    Victorian Branch newsletter / Australian & New Zealand Myalgic Encephalomyalgic Society
    Bib ID 2804838
    Format JournalJournal, Online Online - Google Books
    Uniform Title Victorian Branch newsletter (Australian and New Zealand Myalgic Encephalomyelitis Society. Victorian Branch.)
    Description Moonee Ponds, Vic. : The Society, 1981.
    2 nos. ; 30 cm.

    Caption title.
    Life Dates July 1981-Dec. 1981
    Later Title

    Emerge (Moonee Ponds, Vic.) 1036-1964
    Subjects Myalgic encephalomyelitis - Victoria - Periodicals. | Chronic fatigue syndrome - Periodicals.
    Other authors/contributors Australian and New Zealand Myalgic Encephalomyelitis Society. Victorian Branch
    Also Titled


    Australian & New Zealand Myalgic Encephalomyalgic Society, Victorian Branch newsletter.

    * Holdings
    * Comments
    * Librarian's View
    * Copyright Status

    Collect from: Main Reading Room (Australian Collection)
    Call Number: Nq 362.19684 EME
    Status: Available
    Items/Issues Held: July 1981-Dec. 1981
    Details Collect From
    Nq 362.19684 EME Main Reading Room (Australian Collection)

    Sorry the purples a bit hard on the eyes, eh. People can become members of the National Library of Australia online. Some items are available electronically.

    The ME/CFS Society of NSW has an online forum:



    ME/CFS Australia (Victoria) has an online forum:


    Tahnee Johnson - 7.30 Report 1999 - custody over her teenage daughter with CFS. Couldnt find more info as the story ended with Tahnee to appeal court decision.

  12. Melodie

    Melodie Guest

    Tania, Megan and anyone else with suggestions,

    What do you think a good name for the wiki book would be? ME/CFS (in) Australia - pretty boring so please give us a Title.

    (Tania, your message box is full!)
  13. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    what do others here think?

    Melodie suggested adding XMRV global action to the Australian Advocacy page. The main page of this group is at http://www.xmrvglobalaction.org/ (i cant check the page out today as that page is currently undergoing site maintaince).

    So i was going to add it but on going to do so as it did seem to be a good idea to have that info with the advocacy stuff but once i went to add it, then it didnt really seem to fit right to me with the flow of the Australian page which we've been really keeping focused on the Australian situation. If we add that.. we would need to then also research and add other global CFS/ME Advocacy organisations too, putting under a sub heading of global CFS/ME/XMRV advocacy groups. Possibly start to take away from the aussie info by widening field too much on the Aussie page. It would also make the page bigger (ive been trying to keep the pages not too big so people dont get overwhelmed with too much info). There is still Aussie info to go onto the page

    My personal thoughts on that is that the global Advocacy groups should have their own page as there are heaps of them (and of cause we'd then have a link on the Aussie page, to the global Advocacy groups).

    Im wanting to know more of peoples views on this.. better idea to have all the global Advocacy on separate page to Australian page or not??
    Let us know what you think...
  14. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    sorry **blushes** thanks for telling me. im at times having up to 20 message exchanges per day.. that pm box fills up fast. I've made room again
  15. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    I personally think that is fine. Wiki dont have to be exciting, just easy to understand, clear for people with good information. If we use that one, i think we need to add the "in" to that thou.. so the title of it isnt confused with the Australian ME/CFS organisation which is called ME/CFS Australia.


    or one of the other 101 boring titles that people can probably think of or are very clear for anyone to understand. My brain isnt feeling very creative :p

    anyone else got more ideas? or want to put a vote in for a title?
  16. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    great :) i'd been thinking about doing that myself to make things far easier to find.
  17. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    I think we need the getting electricity rebate info on the main ME/CFS page to which those who need to know about it are most likely to see it (eg the links to the info on it all should be on the main page).. and have listed on the advocacy page, the states who ARENT getting it to which the advocacy there needs to be done (the electricity link provided on advocacy page is just an example of what is happening in other states, what to aim for) .

    umm i need to start a Rebates and Concessions for those with ME/CFS subheading on the main page .. to stick info like this under
  18. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    ohhh i just went to do so and then realised it dont really fit thou under an Australian history and events title of that page.. so not sure what to do now. ummm if i changed the title of that page to something else.. then it may be more suitable to go there.
    But on the other hand.. once we have all that info on that page it may end up to be huge... and we may end up having to break the info down a bit more and create another page with a new title.

    i think im going to leave it all for the time being and sort all the rebate stuff out and where to put it at a later date when there seems to be suitable page for it.

    Right now for the current Advocacy page.. we need to know which states dont have the electricity concessions, so we can add that info into this page
  19. Melodie

    Melodie Guest

    Once the book is named I think it is hard to change, so is it going to be: The Australian ME/CFS Situation or ME/CFS in Australia?

    I dont think we need to link the XGAction page.(but I did find that bit of extra info from there on Dr Hyde's visit!)

    Do the electricity rebates later - sure.
  20. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    yeah.. ive been thinking the same thing.. once the book is named it may be very hard to change??? (but who really knows.. i cant figure out head or toe of it all).

    I really dont care Melodie.. name it whatever you think best.

    i did like some of that idea and still think a just link to a global advocacy page would be good to put in at some point.. (being global to not go into our aussie book thou but one people can know about the global advocacy groups and can get info throu just a link on our page)

    i dont know how the book thing works.. will there be like an index page to the book at the start?? with the links on that to all the other aussie book pages/chapers???

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