ME Advocacy Network Australia (formerly MEAction Australia)

Andy · Jun 24, 2019

From their Facebook post

We are excited to announce that as of today we are rebranding as ME Advocacy Network Australia, affectionately known as MEANA.

In 2016, our group was founded as #MEAction Network Australia, the first #MEAction affiliate, and the first #MEAction group to set up on Facebook. The group was born out of the struggle of many within the Australian community and with the express interest of advocating for the needs of Australians with ME/CFS and their carers.

Over the last three years our group has evolved into a space where advocates come together to discuss, plan and organise actions relevant to Australians. It has also become a space which fosters collaboration, both between individual advocates and the Australian ME/CFS organisations, with joint initiatives arising from within the group.

We have been able to raise awareness through campaigns like #MillionsMissing, submit to government inquiries, lobby politicians for improved research funding and access to NDIS and DSP, helped recruit participants for biomedical research and challenged psychosocial research, among other things!

In order for us to keep growing, increase our support of the Australian ME/CFS community and continue to raise awareness, our group members voted to make this change.

MEANA will continue to advocate for the needs of Australians with ME/CFS and their carers, and to collaborate with Australian and international groups.

We would like to thank #MEAction for their support during our time as an #MEAction affiliate. When we first started neither we, nor #MEAction, knew how being an affiliate would work, but we grew and learned together. We look forward to continuing to work with #MEAction and, of course, to supporting #MillionsMissing events in Australia.
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https://www.facebook.com/MEAdvocacyNetworkAustralia/posts/2263143953753957

MyalgicE · Nov 29, 2019

Sly Saint said: ↑

Didn't know where to post this (is there a general Australian news thread?)

@MyalgicE @Simone

are you aware of this Canberra based group:

ACT ME/Chronic Fatigue Syndrome
ACT ME/Chronic Fatigue Syndrome Society is a not for profit, self help organisation which provides support services such as monthly information sessions, a self help course and Telephone Information and Support Service (TISS). We provide information about ME/CFS and FMS to members, medical practitioners and the public.

https://actmecfssociety.com/
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Yes. They are...not great.

They receive government funding for staffing but only do support not advocacy. The support is only for mild and moderate people who can attend meetings. They can’t help with suggesting a GP or local services.

I met with local government to suggest their funding go to Emerge in Victoria to better support people here in Canberra.

The previous president had an excellent understanding but the current ACT ME/Chronic Fatigue Syndrome President uses only ‘chronic fatigue’. This is a problem in media interviews.

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ME Advocacy Network Australia (formerly MEAction Australia)

Andy Committee Member

MyalgicE Senior Member (Voting Rights)

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ME Advocacy Network Australia (formerly MEAction Australia)

Andy Committee Member

MyalgicE Senior Member (Voting Rights)

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