Event on 31 May, 2019
May Awareness 2019
Badge Day, #MillionsMissing, #LightUpTheNight, media coverage, and more.
This May, we have again worked at raising awareness locally, as well as collaborating nationally and internationally to effect change.
#MillionsMissing
South Australia kicked off the Australian leg of the global event, #MillionsMissing, on the 10th May with a House Party.
We had great fun catching up. Couches, cosiness and cupcakes kept the conversation flowing. Those who were not able to join us were represented by the many empty shoes.
#MillionsMissing is a global event started by #MEAction in 2016. This is a growing global movement raising much needed awareness of the illness.
We may not be able to meet publicly to be seen and have our voices heard, but we can contribute to the growing awareness via social media, by sharing our group photo.
Photos of our event and #MillionsMissing cupcakes were seen globally on Facebook and Twitter.
Badge Day
Awareness rolled over into a second month as our annual Badge Day was held in June this year. It was a great success in raising much needed awareness and funds. Once again it was held at the Mitcham Shopping Centre with a very delightful group of Year 9 Concordia students collecting for us. They did an excellent job on the day getting their tongues around the name Myalgic Encephalomyelitis as they talked with the public.
Prior to the day, Penelope Del Fante had the opportunity to go to the school to speak with the students about ME/CFS. This is always worthwhile as the students hear first-hand the reality of the illness, and any misconceptions due to the name ‘chronic fatigue syndrome’, are quickly dispelled. It was heartening to hear that two students came to the Badge Day having watched the documentary, Unrest, and expressing a desire to help out more.
Mitcham Councillor, Lindy Taeuber, popped by to show her support again this year, and after the event, Sam Duluk MP, Member for Waite, gave us a generous amount of his time to speak with him about the many issues facing our community.
We are very grateful to Concordia's Student Welfare Worker, Jason Kupke, who organises the students and then makes multiple trips on the day, back and forth to Mitcham Shopping Centre, ferrying the students.
Thank you also to volunteer, Karen Hunt, and member Jane Moore, for their wonderful support of the Management Committee, by being there all day.
Photos can also be viewed on our Facebook page.
SAHMRI launches ME/CFS Research Fund
It was heartening to see the SA Health and Medical Research Institute (SAHMRI) launch a dedicated research fund for their ME/CFS research on 12th May this year.
You can donate to their current and future research at:
- Give Easy to SAHMRI
Media coverage
Radio and Television
Sympathetic and accurate reporting of ME/CFS on South Australian radio stations 5AA and on ABC’s David Bevan’s Monday morning segment, What Ails You?, highlighted Dr Mike Musker’s research at SAHMRI. This was followed by an excellent item on the Channel 9 News.
SA member, Aimee De Lurant, joined Mike Musker on the ABC and Channel 9, generously offering her experience of living with ME/CFS.
Newspapers
The Advertiser and local Messenger newspapers also carried articles in relation to the NDIS. SA member, Louisa Stocco, was highlighted in an article in The Advertiser, 23 May 2019.
#LightUpTheNight
Background
Beginning in 2014, iconic buildings and landmarks around the globe have been lit up blue to mark May12th International ME/CFS Awareness Day.
From three Australian locations lit up in 2015, the event has continued to grow, with thirty locations around Australia being lit up in blue this year.
In South Australia, Unley Town Hall joined the iconic Adelaide Oval, the beautiful Adelaide Town Hall and the high impact SA Power Networks digital sign (corner of Anzac Highway and Greenhill Road) in lighting up in blue to mark the event.
We are grateful to SA member, Jac Creedon, who organises the Adelaide Oval light-up each year.
ME/CFS SA has supported the involvement of others, by helping to coordinate the Australian arm of the global event. We are thankful to ME/CFS and Lyme Association of WA Inc and colleagues in Queensland and around Australia for their collaboration.
Facebook posts
Adelaide Oval - Lit up on 9 May
Adelaide Town Hall - Lit up 9-15 May
Unley Town Hall - Lit up all of May
SA Power Networks digital sign - Lit up 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 much of 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