By David Tuller, DrPH
I’m in Sydney now, but last week I had a busy few days in Canberra. My hosts were the wonderful duo of Libby Steeper and Eleanor Flowers. They treated me like royalty and shepherded me around town to the various appointments they and others had organized.
As a representative of the local ME/CFS organization, Libby also joined me for the morning radio interview at ABC’s local affiliate. Eleanor, whose teenage daughter suffers from the illness, attended the meeting with NDIA. We hope that meeting has opened a door that will allow her and other advocates to maintain a dialogue with NDIA going forward.
Here’s Eleanor’s write-up of what we did, which she posted on the ME/CFS Australia Facebook page:
“Last week saw a blitz on action for ME/CFS during David Tuller’s 3-day visit to Canberra.
David spent time on Wednesday with ME/CFS researchers which was very helpful background for him to understand what’s happening in Australia. David, and researchers Chris Armstrong [from the University of Melbourne] and Fane Mensah [from University College London], also had a combined meeting with the Commonwealth Chief Medical Officer. Other meetings incuded the ACT Greens, Minister Tehan’s advisers and the NDIA. The NDIA appointment was particuarly good. After having to miss the original meeting due to cancelled flights, they went out of their way to reschedule. They were very open and appeared to be genuinely interested in improving their processes. One concrete outcome is that List B of conditions (a cheat sheet for their planners on illnesses that may be eligible) should be reviewed later this year. They are open to consulting with us about the possibility of including ME/CFS. David also had an interview with Andrew Lloyd via skype.
David had good media engagements, with a radio interview on ABC666 on Wednesday morning and a session filming for Simon Cunich’s SBS piece. In other media, we had a photo of Susan Hutchinson and Celeste Flowers in the Fairfax photos of the week. There will be a Canberra Times article sometime soon too. Many thanks to David, Chris, Fane, Libby, Susan and Celeste for making it all happen.”