Event on 18 June, 2024
Parliament House Event, June 2024
A big day for our community and the parliamentarians who support us.
It was wonderful to be in the room for this moving and informative event at Parliament House on Tuesday 18 June. The brief but powerful gathering promises to be a new beginning for South Australians with ME/CFS and Long COVID, and those who care for them.
Thank you to each person who attended: parliamentarians, staff, people with ME/CFS and Long COVID, and the people who support them.
Special thanks to Emily Bourke, Tania Drewer and the team for your generosity and support in bringing this event together to further the understanding of ME/CFS.
Being part of this resilient, passionate and caring community is absolutely one of the bright spots of my life with this illness.
It was very inspiring and quite emotional to be there.
A member of ME/CFS SA who attended.
Click on the gallery photos below to enlarge them.
Parliamentarians
Thank you to the sixteen parliamentarians and their staff, from both major parties and the crossbench, who came to listen and learn about the lived experience from people with ME/CFS and Long COVID, and their families, friends and supporters.
We look forward to working with state government to make a difference for people in South Australia with ME/CFS.
Lived experience videos
It was poignant to watch these moving videos in the presence of parliamentarians, staff and our community.
Angus and Megan's story
Click here to watch the video (4:03 mins)
Bruce and Nicola's story
Click here to watch the video (4:52mins)
Watching the videos:
Parliamentary Speeches
Sincere thanks to the Ministers for their interest, knowledge and sensitivity. Their speeches displayed an understanding of and respect for the lived experience of ME/CFS which we rarely experience.
Hon Emily Bourke MLC
Click here to watch the video (8:33 mins)
Hon Chris Picton MP
Minister for Health and Wellbeing
Click here to watch the video (4:49 mins)
Hon Blair Boyer MP
Minister for Education, Training and Skills
Click here to watch the video (4:05 mins)
Penelope McMillan
ME/CFS South Australia
Click here to watch the video (6:13 mins)
#MillionsMissing slide show
Thank you to each person who provided photographs representing ME/CFS, COVID-induced ME/CFS and severe ME/CFS.
Empty seats representing those who couldn't attend
Connecting over lunch
What a treat to be in the room with so many fellow patients and carers, and to have so many politicians able to join us.
It really helps us feel less alone and have hope for a better future.
Pamphlet
Many thanks to Emily Bourke, Tania Drewer and their team for working closely with us to develop a resource that was impactful on the day and will be useful going forward.
Parliamentarians were handed this A5-sized pamphlet, What is ME/CFS? (PDF 4.8 KB), which may be downloaded and printed back-to-back or attached to an email.
Parliamentarians who attended
| Hon Chris Picton MP (Kaurna, ALP) | Hon Blair Boyer MP (Wright, ALP), |
| Sarah Andrews MP (Gibson, ALP) | Cressida O’Hanlon MP (Dunstan, ALP) |
| Hon Connie Bonaros MLC (SA Best) | Rhiannon Pearce MP (King, ALP) |
| Michael Brown MP (Florey, ALP) | Olivia Savvas MP (Newland, ALP) |
| Hon Tammy Franks MLC (Greens) | Hon Clare Scriven MLC (ALP) |
| Hon Dennis Hood MLC (LIB) | Erin Thompson MP (Davenport, ALP) |
| Catherine Hutchesson MP (Waite, ALP) | Tim Whetstone MP (Chaffey, Lib) |
| Hon Tung Ngo MLC (ALP) | Hon Emily Bourke MLC (ALP) |
| Simran Bachhal rep for Penny Pratt MP (Frome, Lib) |
Additional search terms: POTS, post-exertional malaise, PEM
Last edited: 17 July, 2024