2016 was a big year for ME/CFS advocacy around the world. As we turn over the page to the fresh new year, we wanted to reflect on some of the highlights of the advocacy efforts of the #MEAction Network Australia group in 2016.
AWARENESS RAISING:
- We participated in many awareness campaigns and activities during May awareness month (including #UndiesontheOutside and #SockittoMe campaigns, developed by members of our group). Several group members also did media interviews, and others were involved in organising buildings around the country to be lit up blue on (or around) May 12
- We participated in the development of an Australian May 12 website: www.may12th.org.au
- We participated in #MillionsMissing campaigns in May and September, as well as developed a video for social media using Melbourne singer-songwriter Naomi Flanagan‘s Millions Missing song, and running a #MillionsMissing Tweetathon to ensure that the event offered an avenue for participation for people who are bedbound and housebound
SUBMISSIONS & REVIEWS:
- We developed submissions for the review of the National Disability Advocacy Program, and for the inquiry into the Auditor General’s “Qualifying for the Disability Support Pension” report, highlighting the specific advocacy needs of people with ME/CFS
- Group members attended the Disability Discrimination Commissioner’s community consultation sessions to ensure that invisible illnesses like ME/CFS are on the Disability Discrimination Commissioner’s radar
RESEARCH:
- We wrote to each state society urging them to join the call for the release of the PACE trial data (from which two of the societies wrote to QMUL in London in support of the release of the PACE trial data)
- Members of the group have written to Andrew Lloyd’s Fatigue Clinic, expressing concern about the online GET/CBT training program that he is planning to offer to health practitioners
- Members of the group have also written expressing concern about a study aiming to look at video games as a mode of exercise-delivery for people with ME/CFS
We’ve only just begun, and there is a lot more work to do, but we have shown how much we can do from our couches and our beds! We look forward to continuing to raise awareness, and advocate for Australians with ME/CFS in 2017.
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