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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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    ahh i see.. i had to have a quick peek before i head to bed.. you must of confused the "edit tag" button i guess. :) i hadnt even noticed that before and dont have clue what that does.

    *For anyone doing this.. try using the edit at the top of the wiki page we are creating.
     
  2. Megan

    Megan Senior Member

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    On th failed links issue maybe the best way to get around this is to link to the Parliamentary websites that provide lists of members and their addresses, as these will always be up to date. eg here's the link for the federal parliament http://australia.gov.au/directories/parliament-of-australia-contacts.


    EDIT:

    FEDERAL GOVERNMENT:
    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


    STATE GOVERNMENTS:

    NSW:
    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

    VIC:
    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

    QLD:
    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

    SA:
    Health Minister: http://www.parliament.sa.gov.au/Members/Ministers/Pages/Ministers.aspx
    Shadow Minister: http://www.parliament.sa.gov.au/Members/Pages/List of All Members.aspx
    Ministry: http://www.parliament.sa.gov.au/Members/Ministers/Pages/Ministers.aspx
    Shadow Ministryhttp://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

    WA:
    Health Minister: http://www.parliament.wa.gov.au/web...Members - Ministers&Parliamentary Secretaries
    Shadow Minister: http://www.parliament.wa.gov.au/web/newwebparl.nsf/iframewebpages/Members - Shadow Ministers
    Ministry: http://www.parliament.wa.gov.au/web...Members - Ministers&Parliamentary Secretaries
    Shadow Ministry: http://www.parliament.wa.gov.au/web/newwebparl.nsf/iframewebpages/Members - Shadow Ministers

    TAS:
    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

    NT:
    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

    ACT:
    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
    Current Members: http://www.parliament.act.gov.au/members/index.asp?assembly=7
     
  3. Megan

    Megan Senior Member

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  4. alex3619

    alex3619 Senior Member

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    Hi Megan,

    Sorry to disappoint you, but these sites are only usually up-to-date. I found errors, and then there are other problems. One is that you may have limitations on posting, such as only a few hundred words on a posting page, which requires an antispam test, and no email address is actually given to you. Usually you can get around this by running a search for the candidate using their home page, once you know who they are - and their home page often has an alternate and more up to date email address. Sites like the ones you posted are much more reliable for identifying who to post to than actually getting a correct address. In some cases, for example if a minister resigns, then it might not be updated for some time. Other times the email address has been changed and the site not updated. It should be updated, but I still had trouble - not for many minsters I grant you, but at least four. Not that we shouldn't have a link to these sites, many people may want to locate their own member of parliament, and as I said some of these sites can help with identifying ministers and shadow ministers, as well as little known ministries such as the assistant minister for cancer in NSW.

    Bye
    Alex
     
  5. taniaaust1

    taniaaust1

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    Each wiki page.. if you are on it.. has a tab you can press to bring up the discussion page for that wiki page.

    The normal thing to do if there was an isssue on a wiki page whether one of the threads wasnt working or whatever, is to either fix it yourself (whoever has noticed it if the page isnt locked) or post a message about the issue on the wiki discussion page itself.

    Of cause right now we are discussing it here on this thread.. but at later point of time, once this page is kind of together.. any problems with the page would be either fixed by the discoverer.. or posted about on the wiki pages own discussion page letting people know there is an issue which needs fixing.

    The more the page is used.. of cause the more likely the addresses would be right, of cause the links can be checked every so often to make sure they all still work (or at times there has been big government changes eg after elections. (even on the CFS organisation page i made.. one of the links had changed only a few weeks later).

    ifs just a fact of life.. sometimes a link becomes not active (unless its connected to a page where the info is always correct).
     
  6. taniaaust1

    taniaaust1

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  7. taniaaust1

    taniaaust1

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    Good link.. but today not for me.. i clicked it but my half dead brain today needs the info more easily presented.. if i was going to look for someone to advocat to.. today i'd just give right up after seeing the complexity of the page on that link and hence i'd think it would be the case for many worst off then me. maybe that link could be there.. but with also things very easily presented onto the main wiki page??

    (yeah i know more work this way as links will have to be updated much more... im just trying to figure out how to have this info most easily accessable for those with quite bad CFS).

    just a suggestion.. im happy for others to do whatever they want with that page but i'd just think it would be great to be able to easily get the info one wants (without brain stress).

    That's why i liked how the states Governments were set out on the page clearly, without having to hunt (and hurt an already hurt postexertional head).
     
  8. taniaaust1

    taniaaust1

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    yeah. i think it is for most of us.

    Right now i couldnt get my head around any advocacy stuff except getting info onto these two wiki pages. This is overloading me now.. yesterday.. our discussion on the wiki knocked me around a bit and i havent recovered my head yet back from that.

    I cant focus on anymore then one or two tasks at once.

    Blog?? (i dont know if ive gone into brain stupidity or not.. right now i dont really understand exactly what a blog even is).. is that something which one writes i like a journal? (getting confused what blog has to do with wikipage?)..

    Right now my head is just focusing on someone putting up an basic list of contacts and i cant think any further right now. If no one has started on that page.. i suggest that the info Melonie gave goes onto one for a start.. that was fairly clear.

    If anyone else here can think clearly enough to just do that or whatever else they think would be good...go ahead. (brain is about to go on vacation)
     
  9. taniaaust1

    taniaaust1

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    Wow.. the faires did come during the night and fixed my CFS/ME mistake and make them ME/CFS :D

    thanks melonie :Retro smile:

    i'll cut and paste the page somewhere else (if case i loose the page) and try to correct that heading. (which then will throw up two links.. so i then will need to work out how to delete wrong one).
     
  10. Melodie

    Melodie Guest

    Tania I dont think its such a big deal about the heading. Many others here are calling it CFS/Me anyway.

    >"i suggest that the info Melonie gave goes onto one for a start.. that was fairly clear."

    I think you mean the info Megan put up. But I could be mistaken as haven't checked what the heck we wrote yesterday!

    I
     
  11. taniaaust1

    taniaaust1

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    ohhh lol.. ive got no idea now who is who.. i appologise for any name wrong doings to anyone. Your names are too close :p Me 's .. with ns and about the same size. i should start saying.. one of the "M's" then i wont go wrong there ..

    hope i put the quote i was refering to on whatever thread it was..

    i WILL work out how to correct the title (i put a message up asking for advice).. as seeing Australia page.. i do feel a need to get the Aust. term right. (yeah im a perfectionist :p .. well at least want to be).
     
  12. taniaaust1

    taniaaust1

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    Hi Francelle.. i did see you there and was getting to responding.

    The Wiki we are making this page(s) for is the Phoenix Rising CFS Wiki that a few people are trying to get to happen for all to use. eg previous page i've done http://www.forums.aboutmecfs.org/sh...Treatment Review Project:CFS ME Organisations

    So thou we want to make it the best we can.. we dont need to worry if it isnt up to Wikipedia scratch. So feel free to contribute if you would like. The current page being worked on is http://www.forums.aboutmecfs.org/sh... Project:Australian CFS ME History and Events
     
  13. Megan

    Megan Senior Member

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    Hi guys,

    I have taken on board the comments from people regarding user friendliness of the contact list and updated my post accordingly (copied below). This should be easier as it first has a direct link to the Health Minister and shadow Minister's details. Under each of these is the original Ministry and Shadow Ministry list which I assume is still relevant should there be changes. All of them contain relevant email addresses, mailing addresses and often the Minister's title.

    Queensland was the only one where the contact information is only on the main Ministry list and not the members webpage, so I did not post the members webpage separate for QLD.

    Regarding reliability I would have thought the parliamentary websites would have to be the most up to date even if they're not perfect. There must be some public servant somewhere in the 'Dept of Premier and Cabinet' who will get their arse kicked if that stuff's not right?

    Re the point Alex made about the word limit - I think this might be an important clue about how to get heard! If they want a word limit then I think we should endeavour to stay under that limit. There is a very good reason for this. I was once a public servant and recall a Ministers Chief of Staff giving everyone a training session. She showed everyone the size of the briefcase of material the Minister took home every night to read and it was at least twice the size of a normal suitcase! The point was that we needed to keep our briefs within one page if possible - it is amazing what you can do on one page if you try.

    If we must go over the word limit then I would have thouht you could just copy the email address straight into your own email program to get around using a 'posting page'? Most of the websites listed seem to provide direct email addresses anyway.


     
  14. taniaaust1

    taniaaust1

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    oohhh.. im stuck with something on our wiki page.. who here currently has some brains to fix it? The issue is, i currently cant seem to work out how to put the [2] reference for Tracey Ash behind the words "distant light" and then follow with the link right after. Its ending up with huge gaps between those things and i cant work out why? Anyone want to play with it and try to fix??
    http://www.forums.aboutmecfs.org/sh...tralian CFS ME History and Events&redirect=no
     
  15. taniaaust1

    taniaaust1

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    nods.. they dont like reading long mail due to all they have to read and due to that are less likely to pay those much attention.

    Megan.. would you like to put that onto an "Australian Avocacy page" (or whatever people want to call it) or would you like another to add it to one and then Alex or anyone else can add whatever else they think should be on it. Are i even spelling word Avocacy right?
     
  16. alex3619

    alex3619 Senior Member

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    Hi

    I agree that once you have a direct email you can send them what you want - which is why I talked about home pages. I do not think its a big problem that an email is long, the minister will never see it unless a staffer vets it first, and even then they might only see a staffer's summary first. Ministers almost never have time to read emails directly. If you want a chance of that, you would have to send a hard copy at least: physically post them a letter. Physical letters wont be deleted at the touch of a button, they actually have to reach up and file it in the wastebasket - a little harder to do.

    There are some ministers who hide their email - you can't get an email from their posting page. You have to hunt around, check google searches, party (lib, labor etc) sites and so on until you find their email. What I would like is a one stop link: cut and paste to send to 1/ Federal minister and shadow minister for health or 2/ every minister and shadow minister for health in Australia. If we can agree on high priority media outlets (quality reporting, not sensationalism at this point) we should have a convenient one cut and paste section for them too. I also think we should hunt down the federal science advisers and point them at good research and blogs. Science advisers are the watchdogs on science for government: convince them and they will lobby on our behalf, particular if they realize the public health issues.

    The primary point of posting pages, without visible email addresses, seems to be an antispam measure. People also have to identify who they are on the post - another security measure. It is more important to be specific about who you are (with a note to please withhold name/address from publication if you wish)than to worry about length. However, one thing is very important about length: don't bury the story. Your number one point has to be at the top of the letter, and any discussion of that point should be the first priority in that letter. Everything else comes later. Usedtobeperkytina has written a number of discussions on this, and I defer to her experience. Short can be good, but long has a point to - it depends on what you are trying to achieve.

    I understand burnout from doing these things. My letter to the health ministers is still costing me, although less and less, and it has been some weeks now. The easier we can make this for people, the more people can use our resources to actually send emails and letters.

    Bye
    Alex
     
  17. Melodie

    Melodie Guest

    I personally would like to know more about the conference as posted on the Xmrv testing in Aus thread before starting to draft a new letter:

    "did you know that there is a conference planned for Queensland 2-4 Dec at Bond University - Nancy Klimas is attending. In Nz we are sending Dr Vallings and another expert to the conference" http://www.forums.aboutmecfs.org/showthread.php?5957-xrmv-testing-australia/page8

    Thanks for the list Megan. I have asked Cort how to get a new page up on the wiki for advocacy.

    Regarding "I also think we should hunt down the federal science advisers and point them at good research and blogs." Having a shortish list of relevant articles would be helpful. Any suggestions for the best to reference in letters?

    Mark posted some links to two google sites:
    XMRV wonderwheel

    and XMRV timeline
     
  18. Megan

    Megan Senior Member

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    Alex, if you look at the websites listed above you will see that all of them include email addresses, either Ministerial or Parliamentary. If the email is addressed to the Minister then they should get there. I expect many of these are the home pages you are talking about.

    They also include snail mail addresses. If I went to the effort to write a letter I would probably post it because I think you are probably right that a paper letter would be treated more seriously.

    Also if I were sending a letter I would probably be sending it to the Federal Health Minister, my State health Minister and maybe my local member as they are my representatives, but perhaps not to other State Ministers as this would look odd as I am not one of their constituents. This might cut down workload for people if this is all looking too daunting. Even a message to one Minister is something.
     
  19. Megan

    Megan Senior Member

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    Thanks Melodie for sorting out the wikipage. I must say I had no idea what to do and was suffering enough after trying to recompile that list.

    Also the info on the conference at Bond Uni looks interesting. I know a couple of CFS doctors here in Melbourne that would be interested in attending so I will mention it to them. If any one finds out the details can they please post them.
     
  20. taniaaust1

    taniaaust1

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    yes that sounds very interesting.. and if we could put mention something like that in an "Important coming Events" section on the Australian ME/CFS page

    Corts quite busy and has yet to even himself work out how to work the wiki even thou of cause he knows how to put up a wiki page. i didnt realise that what was stopping someone on this thread from putting one up was lack of knowledge on how/what to do.

    Currently the wiki sections arent really sorted out yet.. so a page could put placed under any heading if there isnt a place it fits.. hence why currently the CFS Organisations wiki page is in the Patient Data Respository and Treatment Review Area. Cort told me that was fine.

    To form a new Wiki page there.. one just goes to say the Patient Date Respository and Treatment Review area where all the threads are listed for clicking.... and in the middle of the left of the screen.. it says "Post New Article" .. if a person clicks that.. they can create a brand new wiki page. Seeing the Australian Avocacy page isnt there yet, I'll put it up.

    umm what the wiki also needs.. is a simple page for everyone on how to work it!!! I still havent worked out how i changed a subject heading last time and Cort hasnt played about with it enough yet to know either. Maybe someone could at one point .. do a simple wiki page on how to work the wiki :p (actually i think that would be a great idea... i should make a separate post on the main forums suggesting someone do it so everyone can use it). i think that is why it isnt getting much use.. no one really knows how to work it yet.
     

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