SBS Australia documentary on ME

AndyPandy

AndyPandy

Senior Member (Voting Rights)
Emerge has just posted this on FB.

"SBS is looking for people to go on camera who are severely affected with ME/CFS and have had difficulties with the NDIS. The Feed, a daily news and current affairs program on SBS Viceland, is making a 10-15 documentary about the latest research around ME/CFS and will feature stories of people with ME/CFS who have faced challenges getting the support they need, particularly in relation to accessing the NDIS. Please contact us if you'd like to be on camera."

This is an important opportunity to be heard in Australia. Please contact Emerge if you are interested in participating.
 
Haven't applied for the NDIS, and not intending to given the failure rate of applicants, the less than adequate deals they seem to be getting, and how stressful the process if proving.

Not to mention that ME/CFS seem to be getting a particularly raw deal, entirely due to the policy advice from the PACE/BPS cultists.

Going to wait until we change governments, and see if that is any better. Should be, but we will see.
 
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There are a lot of comments on Emerge's FB post.

I think it's worth posting a comment so that Emerge gets a feel for just how bad things are for ME sufferers in Australia.

Although the original post was about the problems with accessing the NDIS, commentators aren't limiting themselves to that topic.
 
Here’s a preview of the story, which the journalist (Simon Cunich) posted to his Facebook page.




For some context, the guy who talks about pwME/CFS experiencing prejudices, is the President of the Royal Australian College of General Practitioners (RACGP), Dr Bastien Seidel. Dr Seidel has given supportive interviews before: http://www.abc.net.au/triplej/programs/hack/what-its-like-living-with-chronic-fatigue/9046886

However, RACGP continues to recommend GET (and draws on the PACE trial manual) on its website, and refuses to engage with the ME/CFS community to have this revised (though we continue to try to engage).
https://www.racgp.org.au/your-pract...xercise-therapy-for-chronic-fatigue-syndrome/
 
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David Tuller said:
I got an email from a patient saying fewer of us are going to kill ourselves this weekend because of your work. I felt like if I stopped I'd be killing people.
Click to expand...
At the same time both a honest appraisal of how much his work means to so many of us but also a heavy burden to take onto yourself. Never forget David you have saved lives - any responsibility for any deaths needs to go to those who have historically acted against our best interests, not you.
 
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