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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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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

    Yeah it has an index page with a table of contents that lists all the pages (which are called chapters just to make it confusing). Whe the book is created, along with the title you have to write a short introduction for the book (before it is "created") meaning you have to decide on the introduction as it may not be changeable. So does anyone want to suggest a shor t introduction for the book "ME/CFS in Australia"? eg this book contains.........It can be used for.........New information can be added to the pages......Information and links can be easily updated.....
     
  2. taniaaust1

    taniaaust1

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    i was just looking throu the stuff Melonie posted again

    Wow.. to that date... that is way before the famous outbreak in America. It feels strange knowing we had our own ME society going back before that time!! That certain is an interesting piece of Aussie history.

    Im trying to get my head around the post (really struggling to make sense of things).. was that post saying that this society above.. .end up turning into EMERGE????

    Was the 1981, the year that society above started??

    ( :( having a lot of trouble with my posts, i think its taking me about 10 attempts to get the right words on just a simple reply.. i think a word but my brain types a completely different word in which just starts with the same letter. Havent been able to really work on wiki past couple of days as my brain is too short whoops shot)
     
  3. Melodie

    Melodie Guest

    ukxmrv found that Tania. Also Susan has told us about a doctor on the gold coast. Ill put it here for later:
    Dr here on the Gold Coast David Patterson
     
  4. Melodie

    Melodie Guest

    I cant understand it either: Later Title

    Emerge (Moonee Ponds, Vic.) 1036-1964

    Are you trying to put info on the wiki about it? We might have to wait for someone to enlighten us?
     
  5. taniaaust1

    taniaaust1

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    yeah.. on the CFS history page. That is a very interesting piece of history.. to have our own ME articles.. before the cheney outbreak! Actually i wonder what info is in those articlesl??? original ME material.. its kind of priceless...

    Maybe it was the first newsletter of its kind in the world??? possibly going back to the big 50s outbreak???

    i just joined up with the National library to try to find out more. (have to wait for up to 2 weeks.. for a library card before one can even get electronic access)
     
  6. Megan

    Megan Senior Member

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    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:
    http://au.lifestyle.yahoo.com/who/latest-news/article/-/6981932/too-tired-to-live/

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

    Attached Files:

  7. Megan

    Megan Senior Member

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    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.
     
  8. Melodie

    Melodie Guest

    Sorry to hear about you relapsing Megan.

    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.

    http://www.watoday.com.au/wa-news/thedas-desperate-fight-against-a-chronic-killer-20100301-pcvv.html

    I removed the telebriefing links cos I dont know if they were free of trojans etc. Couldnt get anyone to tell me.
     
  9. taniaaust1

    taniaaust1

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    nods yeah.. i do think ME people need some stuff to help with advocacy over here.. hence why im been trying to find some good examples of advocacy letters which would be suitable for Australians to be using.. the references in them and all. I'll check out the stuff you've found :) ... its great that this page is getting closer to being finished.

    sorry to hear that you got knocked about a bit by the election. i had the same thing happen too but have recovered from that now.
     
  10. taniaaust1

    taniaaust1

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    i just checked the page out .. wow so awesome Megan with all those links added.

    it makes me feel a little emotional (in a good kind of way).. just how much we are all here managing to achieve to help others everywhere.

    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.
     
  11. taniaaust1

    taniaaust1

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    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.
     
  12. taniaaust1

    taniaaust1

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    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).
     
  13. Melodie

    Melodie Guest

    Deleted Deleted
     
  14. taniaaust1

    taniaaust1

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    whoops.. oh lol.. ive been editing on this one.. im confused what which we'd decided to get rid of and thought we were keeping the original page.. (or maybe this one isnt the original page.. going to look).

    Anyway http://www.youtube.com/watch?v=ex6iS_2RqiY is that a worthwhile thing to put into things we could use in our advocacy efforts??? (i cant watch it due to my dialup)
     
  15. Cort

    Cort Phoenix Rising Founder

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    You guys are just too good! Has anyone figured out the WIKI enough to do a short "How to"? Maybe we can chat via Skype some time. The pages are very impressive. (Can you do the US next?)
     
  16. taniaaust1

    taniaaust1

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    Just starts ***laughing*** oh i wish!! still working on working out the very basics, its like trying to climb Mt Everest. i think Melonie has worked out how to get a book together (thou probably blood, sweat and tears).
     

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