Wondering how our May12th International ME/CFS Awareness Day Australia project and the May12th.org.au website came to be? Read on to learn more about our project history, and the support we received between 2016 and 2021.
How our May12th Australia project was born
In 2015, a volunteer of ME/CFS and Lyme Association of WA had the idea to have a national website for Australia’s participation in May12th International ME/CFS Awareness Day and Light Up The Night each year.
This volunteer had been helping organise Light Up The Night buildings in Perth, Western Australia, and realised both Light Up The Night and May12th International ME/CFS Awareness Day were being underrepresented in Australia and on social media. They envisioned having a place where we could come together and collaborate as a community each year would increase visibility and offer a pool of time, skills, and efforts. All of the ME/CFS organisations were run by volunteers, most with the illness, so saving time, energy, and avoiding duplication was very important and common sense as organisations and as a community.
The WA management committee at the time approved the proposal, and a proposal was also put together to send to the other ME/CFS organisations in Australia. We received early buy-in and a willingness to support the project from some volunteers at ME/CFS South Australia.
In 2016, ME/CFS organisations were formally invited to participate and be involved. They were informed that the website would be to share Light Up The Night information and photos, and May12th related events happening around Australia. Most importantly this would be Australia’s official awareness website for May12th International ME/CFS Awareness Day.
The organisations who responded in 2016 wanting to support this project and work together for May12th Australia awareness were:
- Bridges & Pathways Institute Inc.
- Emerge Australia Inc.
- ME/CFS and Lyme Association of WA Inc.
- ME/CFS Australia Ltd.
- ME/CFS South Australia Inc.
Coordinating Light Up The Night Australia
Between 2016 and 2020, a volunteer at ME/CFS South Australia took up the initiative to coordinate who in each state or local area was organising buildings and landmarks for Light Up The Night Australia, including in locations where there were no ME/CFS organisations organising locations in their state.
This ME/CFS South Australia volunteer contributed significant time to this coordination each year, filling out booking forms for local councils, and relaying the information for the website and social media, and we are very thankful for their contributions. We would not have had so many buildings and landmarks light up blue each year without their continual dedication and support.
“A lot of coordinating and record keeping goes into Light Up The Night each year. This wonderful lady from South Australia put a lot of time into this each year for 5 whole years, and really helped pull it all together. She is truly amazing! She does not want any credit for her volunteering, but she knows who she is.”
These days, ME/CFS organisations are primarily responsible for organising buildings and landmarks for their local area. We encourage ME/CFS organisations to contribute to Light Up The Night for their local state or area each year.
For 2021 onwards, there was an official form to submit Light Up The Night Australia information so that information is streamlined and to save time for everyone involved. The form functioned very well for 2021, and will remain in place for next year.