On The Radio
In December, 2004, there was an hour long program on Background Briefing on Radio National (In Australia) discussing pain and the use of narcotic/opioid painkillers for pain. It included two patient profiles to illustrate what they were discussing - the patients were myself, and Moira Smith, who runs the only other large Fibro/CFS website in Australia! The audio was online for several months, but lately has been removed from the site and there is now a transcript of the program available for those who are interested.
I am working on obtaining a copy of the audio in mp3 format so I can make it available (with permission) on this site also, but have not suceeded at this point.
Listen to yours truly on statewide radio in May 2002 talking about the major problems with our wheelchair taxis that refuse to turn up on time, if they come at all! (link is an mp3 file, approx 6 minutes of talking, 2.4mb - If you are using Windows, shift-click on this and save it to your hard drive instead of playing it directly, because the server is on a very slow link and you won't be able to download it fast enough to play it in "real time". Sorry about that!)
Australian Working Group
In Australia in 1996, a working group has been set up by the government to produce guidelines for the diagnosis and management of CFS. These guidelines would theoretically be used by Medicare, the Department of Social Security and many other groups to dictate how CFS could be diagnosed and managed and turned out to be a total disaster despite many articulate submissions from the CFS Community in Australia.
I was asked to write "my story" to be included in one of the submissions to the committee. Although the report itself was very negative towards people with CFS, I am proud of the sumbission I made.
New Name For "CFS"?
During the time in 1999 when it seemed that a new name for "CFS" was imminent, I wrote this article about the idea.
Mailing Lists
I started and currently maintain the OzME Mailing List for people in Australia and New Zealand who have CFS, FMS and related disorders such as MCS.
I also helped to start and maintain several other lists mailing lists related to CFS.
Links
I made a page for links related to activism. It's just new, but it's growing slowly.
