SBS Australia documentary on ME

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.

 

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.

 

Could they include an interview with Dave Tuller who is in Australia now?

 

Emerge FB link?

 

https://www.facebook.com/EmergeAustraliaInc/

Here you are @Sean

Hope it works. I'm not so great with IT stuff.

 

I hope Tania on PR takes advantage of this.

 

I've tried to contact her privately about it. I'm not sure how she is at the moment.

 

Hi @Daisymay

It looks like Emerge will be streaming a live session with David Tuller on FB at 2.30pm Melbourne time Friday 16 March.

Link to Emerge's FB is in a previous post.

 

I've set up a thread with the three videos here:
https://www.s4me.info/threads/emerge-q-and-a-with-david-tuller.3023/
hope they work ok

 

SBS is screening the documentary about ME and the NDIS tonight at 7.30pm on SBS Viceland - The Feed.

 

Thanks for that. I would have missed it. Set to record.

 

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/

 

This is an excellent short programme.
The video on the SBS website, https://www.sbs.com.au/news/the-feed/fighting-disbelief-chronic-fatigue-syndrome
and on YouTube

https://www.youtube.com/watch?v=iym0mBx8fCI

Thank you to all who took part, including @dave30th

 

Thanks to all who contributed.

Bless you @dave30th for fighting for ME sufferers in Australia.

 

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.

 

If watched the story and thought it was good, it would be great if you would head to The Feed’s Facebook page (if you’re on Facebook) and leave a comment on their post:
https://www.facebook.com/thefeedsbsviceland/

 

Code:

https://www.facebook.com/thefeedsbsviceland/videos/599581853708858/

Direct link to copy and paste.

 

https://twitter.com/user/status/981298500624302080

 

I agree. David, you are amazing.