Who we are
ME Advocacy Network Australia (MEANA) is a grassroots network of people with ME/CFS, their carers and other healthy allies, empowering each other to advocate for health equality for Australians with ME/CFS.
Founded in 2016, we come together through Facebook, and use the online and social media environments to our advantage. We try to ensure that opportunities to be involved in advocacy are inclusive and accessible to those who are housebound or bed bound.
This is a community effort. No single individual can create the change we need. People contribute according to their skills, interests and energy, and all contributions, both big and small, are valuable. As individuals we may be just one voice, but as a community of voices we are powerful. Together we will be heard.
What we do
We work to improve the lives of Australians with ME/CFS, and their carers, through:
Raising awareness
Participation in global campaigns such as #MillionsMissing events, #LightUpTheNight and others.
Political lobbying
Letter writing campaigns, meetings with politicians, questions about issues related to ME/CFS during Senate Estimates, and writing government submissions.
Media representation
Pitching stories directly to media, participating in media stories and writing letters to correct misinformation in ill-informed stories. We have also produced press releases and media kits to help anyone in the Australian ME/CFS community obtain media coverage in their local media. Highlights include SBS The Feed, ABC 7.30, SBS Insight, The Today Show, Today Tonight, as well as many radio interviews and local newspaper articles.
Research advocacy
Lobbying for increased funding for biomedical research and challenging flawed and questionable ME/CFS research, especially research which presumes the condition is psychosocial and promotes GET or CBT as suitable treatment. Two members of our group were invited to participate as consumer representatives on the NHMRC ME/CFS Advisory Committee.
International campaigns
While we have a particular focus on Australian issues, we also participate in international advocacy efforts, such as joining the calls for the PACE trial data to be independently analysed and working to ensure that the World Health Organisation’s International Classification of Diseases (ICD) did not reclassify ME/CFS from a neurological to a mental health disorder.
Collaboration
We collaborate with many Australian and international ME/CFS organisations, including #MEAction, Emerge Australia, ME/CFS Australia Ltd, ME/CFS South Australia, ME/CFS and Lyme Association of WA, ME/CFS and Fibromyalgia Association of NSW.