About ME Australia

ME Australia focuses on Australian activities and research to inform people of developments involving Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS).

Established in 2016, ME Australia aims to improve the lives of people with ME by advocating for change, in partnership with scientists, other individuals, organisations in Australia and internationally.

ME Australia is a collaborative network of people across all states and Canberra, including people with ME, families and others with a close connection to someone with ME.

ME Australia acknowledges the First Nations people of Australia as the traditional owners and pays tribute to Elders past and present.

Write to us at m.e.australia(at)outlook.com

2 thoughts on “About ME Australia

  1. I have ME/CFS and I find it really hard to get any information at all. I’ve had it for 2 1/2 years and only just found out about #millionsmissing yesterday from watching Unrest on Netflix. GPs don’t get it. Specialists are hard to find. But GPs have waiting rooms and information boards. They have flyer boards. They have TV running medical info boards. I don’t expect my GP to know everything. But I’m so disappointed there isn’t stuff lying around. I’m disappointed more research being done just by support groups so if anyone ever does want information there is at least some quantitative anecdotal information. For example, is there a different presentation between those that get it directly after fever based illness and others; is there subgroups like those that lose cognitive and speech more than movement, do some people get fibromyalgia and ME/CFS taking turns. I feel like we could do more. I feel like we are missing, even from our own support network. It’s not hard to put together a survey monkey. I want to feel like something is happening, even among ourselves. I’m happy to volunteer time. I’m housebound but if I can do anything from home, let me know.

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