Event on 31 May, 2018
May Awareness 2018
ME/CFS issues raised in SA Parliament, media coverage, Badge Day, #MillionsMissing, #LightUpTheNight, and more.
Coming hot on the heels of a very busy April with David Tuller's visit, May awareness was soon upon us.
- Sam Duluk MP speaks in SA Parliament
- SA Tourism Commission awareness and fundraiser
- Media coverage
- #MillionsMissing
- National conference presentation
- Badge Day
- #LightUpTheNight
- Background to May 12th
Sam Duluk MP speaks in SA Parliament
Sam Duluk MP raised ME/CFS in the SA Parliament on Wednesday 20 June 2018, by tabling a Private Member's Grievance.
It was wonderful to have such an enthusiastic group sit in the gallery to hear the speech and to enjoy discussions afterward.
We were aware of those who were unable to join us due to their health, including Angus Resch who had graciously allowed his story to be told by Sam in the Chamber and management committee members who organised the event.
View the full report, video and transcript of Sam's speech.
SA Tourism Commission awareness and fundraiser
Past President, Peter Cahalan, invited his colleagues at SA Tourism to support ME/CFS during May awareness.
It’s nice to report that my colleagues at the SA Tourism Commission are donating the proceeds of their Casual Clothes Friday for contributions to the Society.
Peter Cahalan
Many thanks go to Peter for this initiative, raising much-needed funds and awareness of ME/CFS amongst his fellow workers. Our sincere thanks also go to all the staff involved at the SA Tourism Commission for their support.
Media coverage
Television
7:30 Report
'Potentially harmful and old-fashioned' chronic fatigue treatments under review'
#MillionsMissing
On May12th, we joined #MEAction's global event and held a #MillionsMissing house party.
It was an enjoyable afternoon catching up and meeting new members. It was a thrill to know that we were one of 100 cities worldwide marking the event.
National conference presentation
Choosing Wisely National Meeting
Patients with ME/CFS have been instrumental in investigating the science behind the potentially harmful Graded Exercise Therapy (GET) and advocating for the removal of GET from clinical practice for ME/CFS.
This advocacy was highlighted to Australia's medical colleges and professional societies at the recent Choosing Wisely National Meeting in Canberra, via a poster and power point presentation,
A comprehensive coverage of the event, including links to the poster, power point presentation and more photos.
Badge Day
Badge Day was held on 24 May at Mitcham Shopping Centre this year with wonderful support again from Concordia College. Student Welfare Worker, Jason Kupke, transported students back and forth from the school to Mitcham as his team of thirteen students from Year 9 took turns collecting.
Local MP for Waite, Sam Duluk, came along to the Badge Day and was keen to talk to members. After hearing of the lack of public awareness Sam offered to raise our concerns in SA Parliament under a Private Member’s Grievance. Mitcham Councillor, Lindy Taeuber, also joined us on the day to show her support. Both Sam and Lindy put up posts on their Facebook page, getting the message beyond our community.
Thank you to those members who came along to support the day.
Prior to Badge Day, management committee member, Penelope Del Fante, had the opportunity to sit down with the students and share information about ME/CFS and answer their questions. This has been a wonderful opportunity for grassroots awareness and we are very grateful to Concordia for their ongoing support, now in its third year.
#LightUpTheNight
#LightUpTheNight is a global event where iconic buildings and landmarks are lit up in blue to raise awareness. Spurred on by member Jac Creedon’s efforts in securing the lighting up of Adelaide Oval in 2015, SA led the way by initiating an Australia-wide effort in 2016. This collaborative effort continues to grow with more advocates taking on responsibility for their local state/city and this year a record 25 locations, plus a digital awareness sign were involved.
In South Australia, Adelaide Oval, Adelaide Town Hall and SA Power Networks supported the event.
Thanks to our colleagues at ME CFS and Lyme Association of WA, there is a website where all Australian May 12th activities can be viewed: May12th.org.au
Adelaide Oval, 10 May
Adelaide Town Hall, 12 May
SA Power Networks, all of May
Australian locations
Photos of the buildings and landmarks listed in the image above, may be found at May12th.org.au.
Background to May12th
In 1992, 12 May was chosen as the international awareness day for ME/CFS as it is the birthday of Florence Nightingale, the pioneer of public health and the founder of modern nursing, who suffered for decades with an ME/CFS-like illness
Florence contracted what was called 'Crimean Fever' whilst serving in the Crimean War. After returning home at the age of 38, she spent the next 50 years homebound and bedridden, achieving her later work from the confines of her bed.
In 1995, a blue ribbon was adopted to represent ME/CFS.
Last edited: 15 May, 2022