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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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    http://www.forums.aboutmecfs.org/sh...tralian CFS ME History and Events&redirect=no i just down sized the headings.. and finally worked how to fix the issue i had with one of the heading sizes (had the info in the wrong area so the code wasnt working how it was meant to).

    Nods.. Alex i agree the Dubbo studies need to be put on the page as they are quite famous and quoted a lot. Anyone got links to those studies? bbl ..dinner time.
     
  2. Melodie

    Melodie Guest

  3. Melodie

    Melodie Guest

    I personally find drafting letters difficult, so does anyone have any ideas for what would be useful for putting on the wiki for lobbying. I don't seem to have permission to be able to put things on the wiki myself.
     
  4. Melodie

    Melodie Guest

    Alex I have plenty of gigs left so if there is anything you need please ask.

    (Need to go off my computer soon for tonight.)
     
  5. alex3619

    alex3619 Senior Member

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    Hi Melodie

    Links are the best option, with creation or use of other sites and forums. Letter writing is a problem for many of us: personally I am in favour of a piecemeal approach, using small segments of text that address various issues - just paste what you need. The PR forum on FAQs might be good here too. I think the ENOUGH forum topic might also be useful here. A repository of email addresses for Australia is of major importance - I find tracking through masses of websites looking for current emails exhausting, much more than writing the letter itself. We also need to be thinking outside of government, including instructions on how to post to the ABC, email addresses for government advisers (including the science advisers) etc etc. Over time I hope these links will increase, but we also need a reporting method for failed links, which could happen especially after an election anywhere in Australia. Identifying friendly or potentially friendly advocates, politicians etc is also important, even if they are not directly involved in health. This should include the Greens, not just the two major parties. Philanthropists are also important here, many have a strong voice such as Dick Smith, although I think he is so focussed on population at the moment that he might be a poor choice in the near term.

    Bye
    Alex
     
  6. taniaaust1

    taniaaust1

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    i remember a dr whiting who was doing some research. i forgot now exactly what he was researching in CFS/ME. He was a well known name way back.
     
  7. Melodie

    Melodie Guest

    thanks for that. Regarding the failed links, I hadn't thought of that, do you mean more than just updating the link on the wiki that there should be a separate list for them? Gotta get off this computer now, Bye.
     
  8. Francelle

    Francelle Senior Member

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    Haven't read all the posts in this thread, as too tired, so don't know if this has been raised yet - but it will be important to have some proofreading and editing done of the content before posting to Wikipedia.

    Well done everyone!
     
  9. Melodie

    Melodie Guest

  10. taniaaust1

    taniaaust1

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    Someon on that other thread from Australia recently emailed the WPI and got the following reply back

    "You will need to contact VIP Dx to inquire about that. They can be reached at info@vipdx.com. All the tests need to be ordered by a doctor so you many need to find a physician in the U.S. Also, we are working on making the technology available outside of the US - you can also wait for that. There is no timeframe when that will be ready. "

    So they arent saying soon now. Didnt the lab they were hoping to work with change its mind?
     
  11. taniaaust1

    taniaaust1

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    Seeing the wiki article is for Australia.. what is the common term of it in Australia.. CFS/ME or ME/CFS???? (goes to have a look at what our Aust. Organisations are calling it).

    Wasnt there talk that the Alter article wont be out now till around the end of the month??
     
  12. taniaaust1

    taniaaust1

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    ohhhh thanks Melonie. i see now the term here is ME/CFS. Everything on that wiki page should be changed.
     
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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  14. taniaaust1

    taniaaust1

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    ??? did you try to post something and not have it work? It should work.
     
  15. taniaaust1

    taniaaust1

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    Alex... i think it would be a good idea to link an Avocatcy (sorry my spelling is shocking) in Australia page to our Australian History and events page. Could you do a "Avocacy for ME/CFS in Australia" page or whatever you want to call it, to which we can link to the page we are doing now???? i know you know far more in that area than any of us due to all the ministers you've been mailing... you could just go throu your sent email box and make a list of the ones you've been mailing for this.

    It could have all the names to mail.. and could include suggested ME/CFS issues we could be contacting them over.

    What do you think about creating that page to link up with the one we are doing??
     
  16. alex3619

    alex3619 Senior Member

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    Hi Melodie, if we can just update a link, great. However, it is my experience that some new email addresses etc. (and I mean updating addresses, not just links) are hard to find too. so if someone can't find it and fix it, there should be a way to report problems. A forum question might work, but a more formal way would be better, such as some place we can leave a list of issues.

    Bye, Alex
     
  17. alex3619

    alex3619 Senior Member

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    Hi Tania

    I may have more experience, but I am a geek at heart and politics is a foreign language. There are specific issues on advocacy that I can talk about though, I am thinking a blog might be more effective. Some of my ideas have already been mentioned at:

    http://www.forums.aboutmecfs.org/sh...ible-letter-to-the-Australian-Health-Minister

    I am more than happy to write a blog, but I probably wont start this week. Also I think we should aim to create as many easy links to advocacy forums and sites as we can, perhaps using group links (eg. the first link is to Advocacy Links, which points to a page of only advocacy sites, not information sites). On PR this would be specific advocacy related threads, for example, not PR as a whole. the other thing is, we should link to sites anywhere, not just Australia, but subroup them eg. Australian sites, USA/North America sites, PR threads, etc. As the advocacy movement grows (we hope), we can keep updating links.

    Bye
    Alex

    (Sorry tania, I was proofing my post and started proofing your quote by mistake... Don't worry about spelling, I am happy if I just choose the right word, spelled correctly or not, and as for grammar if what I write is understandable the rest can go hang until someone has a cure for my brain. If that is true for me, I would have to be mean spirited to not extend the same courtesy to others.)
     
  18. Melodie

    Melodie Guest

    Good one!:D
     
  19. Melodie

    Melodie Guest

    I figured it out. I was using the wrong edit button!:rolleyes:

    Going to bed now.
     
  20. taniaaust1

    taniaaust1

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    LMAO.. i see we are all going to have a great time with this. Maybe surprises whenever we go back to look at it LOL.

    I need to go to bed too.
    goodnight
    (still hoping that when i next look at the page.. that all my CFS/ME mistakes have been magically changed by the faires)

    lol melodie.. oh lol is there two edit buttons there.. blurry sight today??

    we'll work the thing out
     

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