When the 'Holiday Season' Is No Holiday at all for Those With ME/CFS
Is December getting to you? Jody Smith shares some thoughts on some of the struggles that all too often attend this time of year ...
Discuss the article on the Forums.

Australian ME/CFS Advocacy Contacts List

Discussion in 'Patient Data Repository & Treatment Review Project' started by Melodie, Aug 28, 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?
    * Importand 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 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 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) http://www.mecfs-vic.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


    Things you may want to include in your Advocacy

  2. Melodie

    Melodie Guest

    Notes from discussion on the old advocacy page:

    Hi guys I have been tuned out for a few days due to other things including a relapse for a few days after the election. I have just added some more media contacts undet the radio and newspapers section. This section looks good.

    I have got some articles from someone in W.A. that will be good for out repository of cases that we can include in letters to ministers or quote to journalists. I think such a respository is important otherwise no one will understand the importance of CFS stories unless we can show cases to them. These would sit well with the story Melodie posted in an earlier post from the 7:30 report http://www.abc.net.au/7.30/stories/s21850.htm

    W.A articles:

    There is an attachment with a better article below but I couldnt find a link to it.

    Attached Files

    * File Type: pdf Theda West Austra&.pdf (1.63 MB, 2 views)
    Re some of the other posts, I am happy to have a link to the global action page, like in an international links section or something. But I think it would be best overall if we try and keep the advocacy section focussed on Australian advocacy as it will be too big for us to try and take on US advocacy. US advocacy affects us but would require a whole set of different information so is really another task altogether.

    I had envisaged the advocacy section as a kind of 'one stop shop' resource where people who want to do Australian advocacy can quickly get much of the information they need to put together a letter or package of information for a media outlet etc. eg. could get ideas, contact information, case examples from a repository, statistics on lack of research funding that they could quote etc. Basically not just saying what needs to be done but giving people some of the raw material quickly so that they can do it.


    This is for any one who has the energy. I am putting a link here for short news video about Theda from WA news (online) with an article. There is a lot of advertising on the page. I think the article Megan has might be better but this one has a video. Does anyone have an opinion whether it is any good for advocacy.


    Need to find out how to attach Megans Theda West Austra pdf


    All we need now is to have some good advocacy examples which others can follow to do letters or whatever.. and this page i think then will be finished. (at that point, i'll copy this page and put it at the other site on their wiki too). Also as soon as it's finished, plan to provide this page and its link.. to not crazy forums so Aussies there can also use it (also will see if any of them have any more ideas for it)... then after that maybe our CFS societies would like to have a copy of it on thier websites too.


    I found following http://www.onlinenewspapers.com/australi.htm (has a big list of the different Australian newspapers and Radio stations so those can be put onto our contact list).

    I added some new subheadings at bottom of the Advocacy page to cover the Areas we are currently missing. (if anyone has better subheading idea there to what i've put please let me know.. im not sure if i really like the subheadings i put, something else may sound a lot better).

    Megan.. i added that CFS/ME story from WA.. so people can include that link to add to their own stories. (thou pity that it talks about her father who is a psychologist or whatever he was.. not believing she's got a physical problem.. that being in that article.. some may use that to confirm to themselves that our illness is psychological if they alreadly are a bit slanted in their thinking towards that.. they could take the side of her father who after all is a specialist!!
    i myself wouldnt use that story for that reason. I wouldnt want to give a ME article to a disbeliever which in a way helps fuel their disbelief.. other then that, it would of been a great article to use).

    If a better Australian one comes up to use in advocacy, it may be a good idea to change it over at that point.

    i didnt include the one about the child being taken away.. as that story is over 10 years old so people may not pay much attention to it (does that stuff still happen now since now much more is known about CFS/ME??? i remember 10 years back.. it was WORST in Australia back then), better if we can find some more recent stuff.

    i think we need up to date stuff so people pay attention more.

    (im still going throu the rest of the suggested links you put here). Thanks :)

    There is no one in australia who's done a one person protest like Rivertia (not sure if i have her name right) is there??? An example of a one person protest would be great.

    the pfd attachment link article comes up sideways ... its another article which talks about two sides of fence with CFS/ME the psychological verses the other side. (so a reader who dont know about this illness will end up choosing a side).
  3. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Melonie... ohh lol.. that test accident page i'd made that you thought you'd deleted.. its still there!!
    **starts giggling** that's what happened to me too, i really thought i'd deleted the thing, but then found out it was still there!!
  4. Melodie

    Melodie Guest

    Yeah, I know. It would have been nice if someone could have just told us how to change titles, delete pages, etc. How did you try to delete it? I used the delete chapter button.
  5. Megan

    Megan Senior Member

    Hi guys,

    I just updated some of he newspaper links but am a little confused over which page/book we are working on so I changed it on both! I also fixed up (I think) the muck up with the size of the extra heading I put in the other day. I find the font sizing thing confusing. I was just trying to stick in an extra heading to separate the research information from the contact list.

    Melodie I tried to upload the west australian article but it says I dont have priviliges to do it. Maybe if I email it to you you could try? I have tried to find the electronic version on line but couldn't find it.

    Regarding the repository of examples/ CFS explanations, I was thinking there must be some pdf brochures our cfs societies have that we could use. But I checked the australian site and I couldn't find any we could download. I might try and get them through other means. Does anyone else know how to get these?

    Also, if anyone has it, pages 121-124 of Alastair Lynch's book give a very good summary of cfs information and symptoms. p 124 on its own is very good and easy to read. I'm too tired to type it out at the moment. But including a page from Alastair lynch in a letter might be helpful to get the attention of people, expecially men, who know who he is.

    We need some good examples of people who are moderately affected to so that people can understand the serious cases, but also how those who are not bedridden or housebound are still extremely limited.

    I think the Adelaide society website has some good stuff but I was too tired to look at it the other night an really need to go to bed now.
  6. Melodie

    Melodie Guest

    Megan its funny that you couldnt upload the west australian newspaper article here because it was the old advocacy wiki that was supposed to have the editing blocked!!? But i see you could edit it anyway. this wiki is strange. You should have privileges. If at any time you want to ccheck the protection status just click on the protection tab and choosing no protection allows changes. Thanks for putting the new edits - media links - on both pages. I looked for electronic version and couldnt find either (WA article on Theda). If you cant upload then I cant either. I dont have special permissions.

    The reason the new pages were created: When the titles were corrected on other pages (non aussie pages), unwanted duplicates and redireccts were created. So I mmade new aussie pages from scratch. The delete chapter button didnt delete the old ones which is why we have two lots now. The only drawback is that the new ones dont show all the contributors. So when and if a mod can help we need to decide if we want to delete the old ones (and list of contributors) or try and change the titles of the old ones and delete the new ones.
  7. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Got to be very careful if quoting whole pages of books as one can get into copyright issues... it would be best to find an article he's done online and include a link to that if one wanted to use any of his stuff for advocacy.

    dont worry.. both Melaine and i are both confused right now on what is what :p . We are trying to fix it up quickly as its confusing everyone and you werent the only person not knowing where to post right now.
  8. Megan

    Megan Senior Member

    Hi Guys,

    Thanks for the effort you guys are doing to sort this out. I can only do this stuff in fits and starts, but it certainly looks like it is coming together.

    Just to clarify, is it this wiki page the one that we are supposed to be doing things on?


  9. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    i had a thought.. maybe cause you started off that page.. maybe its giving you special permissions??? ive not a clue if that is so or not.. but just a thought i had. (maybe something has changed??)
  10. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    I think we are going to try to use the original pages in which everyones imput is listed with their name at bottom of the page... if we can!!, a couple of pages we want to try to change a heading a little eg our good doctor list didnt have Australian in it before... (so we want to stick with original page but change heading if possible).

    Things right now till we manage to fix the duplicate pages are way confusing.. i actually suggest to post anything to go onto the page.. at the Calling all Aussies thread on the main forum (?? i hope ive got the name right), till we have things fixed and the duplicate pages gone. (if anyone does copy anything here thou onto wiki.. we will endevour to try to make sure it is added to whatever page ends up being kept).
  11. Melodie

    Melodie Guest

    Tania, if a mod could help out it could fix everything. Either change titles, delete unwanted wiki, or put a lock on one.

    Megan, Tania wants to use the old wiki pages so shall I delete the content of the new ones so people wont edit them?
  12. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    There is no mod as such who can actually come and help out.. only us.. if we ask how to do it all from ones outside of PR (the developers of the wiki).

    i thought we didnt know how to delete wiki pages???? When i tried that in past, it didnt work.. as far as im aware.. we still dont know??? or do you know how to delete???? have you managed to do that before?? That was one of the things i've been searching for info for.

    i have some good news :) .. i actually FINALLY found some instructions on how to alter a wiki pages title in a way its meant to stop making two pages from one.. and are about to try that right now!!

    fingers crossed that it will maintain who put input onto the page. We wont know till we try it.
  13. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    i also just cleared out 5 mails out of my inbox (and will clear it out further before bed).. im assuming you may of tried to pm but it was full yet again. (some day im going to have to go throu everything and clear it out properly). Im trying to keep a gap there.
  14. Melodie

    Melodie Guest

  15. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Melodie.. i cant pm you as it wont allow it (something going on with your side of things).

    I wont be about the rest of this afternoon or tonight, as im having some kind of brain flare (feeling weirdness like my brain is swelling) and almost had a full seizure today when i was out in public, i need to rest up till the neurological symptoms are fine again. (hopefully tomorrow i should be back to normal.. with rest i should come good fast). It sucks as im not tired so feel energetic.. but just all neurologically screwed up right now to point in which its risky just trying to read all the forum posts.

    anyway.. hopefully will be able to be around tomorrow to be able to read the posts and work on that wiki.

See more popular forum discussions.

Share This Page