Australia: News from Emerge Australia

Post on Facebook from Emerge.

Code:

https://www.facebook.com/EmergeAustraliaInc/videos/10156541270639111/

 

Australia - Inside Melbourne's Ross House, a heritage building filled with charitable souls

https://www.abc.net.au/news/2019-01...-heritage-listed-non-profit-building/10610824

 

Article - Dr Heidi Nicholl explains what we need to know about chronic fatigue syndrome - 7News June 2019

https://7news.com.au/the-daily-edit...ondition-heres-what-you-need-to-know-c-160622

(couldn't view the video, but guess the above is a transcript?)

 

"We know it affects about 80 per cent of women compared to 20 per cent of men," Nicholl said.

Not very well put. Sounds like 80% of women can expect to be infected!

 

yes, there's one ambiguity in one of Heidi's comments. but otherwise she's mentioned all the key points about the disease - prevalence, severity, triggers, management - and used language that the general public can understand. it was a short interview, with a lot of detail.

Heidi is a superb advocate. Her brief interview might help undiagnosed patients, & change public perceptions.
Her team are helping to influence politicians, medical authorities, welfare agencies, disability support agencies, etc.

i'm not gonna quibble about a minor error.

 

The “transcript” is not verbatim and doesn’t include the questions or comments from the hosts. In context it was clear what was meant. Heidi compared it to other illnesses like MS, lupus and RA where there is also a similar higher prevalence in women than men.

 

NOTICE OF ANNUAL GENERAL MEETING
NOTICE is hereby given that the 2019 Annual General Meeting of

EMERGE AUSTRALIA INCORPORATED

will be held at

Ross House, 247-251 Flinders Lane, Melbourne

on

Thursday 21 November 2019

commencing at 6.00 pm

https://emerge.org.au/notice-of-2019-annual-general-meeting/#.XVauMrjk_CM

 

Code:

https://www.facebook.com/MEAdvocacyNetworkAustralia/posts/2386256471442704

https://twitter.com/user/status/1168403700546711553

 

Is there anyone who can give a condensed highlights? The broadcast is 4 hours long.

 

After you connect to the link that gives the 4 hr program, look to the right where it says "Living with Chronic Fatigue Syndrome 48 min 46 sec" and click on that. Then just the part on CFS will play. I thought the presenters did a very good job. The message that this is a serious, complex disease is starting to make the rounds. It gives me hope. Thanks to Emerge Australia and Dr. Fisher.

 

Thanks, @Willow I didn't notice that.

 

This is the link to the relevant section. https://www.abc.net.au/radio/programs/nightlife/living-with-chronic-fatigue-syndrome/11472388

An excellent 49 minutes. They covered just about everything and I found nothing to quibble about at all. The end of the program described the recent Biobank development.

 

AUSTRALIA'S #1 ONLINE CPD EDUCATION PLATFORM

Busting the myths and redefining myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

https://www.thinkgp.com.au/education/mecfs

 

I don’t know if this video is geoblocked, but we have world MotoGP champion, Casey Stoner, as our new ambassador!

This short interview was on the Today show, a major morning TV show in Australia.

https://9now.nine.com.au/today/vide...en-goes-undiagnosed/ckgih3lam000f0hpae3b7jgwk

 

Apologies for posting a link to FB for those not on there, but this is the full interview:

 

Unfortunately won't play for me.

 

I was worried about that!

The clip has been uploaded to YouTube. Unfortunately, the presenter introducing the interview refers to the illness as ‘chronic fatigue’ twice in the beginning (a huge issue for us in Australia), but if you can get past that, the rest is worth it. The highlight for me is the very end, when the panel are shocked by Casey’s ongoing limitations: that he can test ride a new bike, but then he’s out for a week.

https://www.youtube.com/watch?v=lYMpM2LUGOY

 

Aside from the references to 'chronic fatigue' by the presenter, I thought the video did a good job of painting a picture of the illness.

Had not heard of Casey before today (then again I don't follow MotoGP), but good for him for speaking out about his illness!

And very good news about OMF!

 

Wow. Casey Stoner. That is a celebrity name. I hope he's doing okay. As an old, bike rider who had to give it away, I feel for him.

I'm also very impressed, having posted only yesterday on how it is almost the norm in media reports for women to be presented as the typical sufferer. I've heard the odd, radio interview in Australia in which a chap admitted to having ME/CFS but I can't think of a single one on teevee before this. Good on Casey for doing it.

I'm not quite so enthusiastic about the presenters' reaction. The blokes come across to me as struggling awkwardly to say the right thing. But if the new policy is to acknowledge such misfortune, and they have to go along with it, that's fine by me.

 

A new, short, article on Stoner and his ME.
MOTOGP CHAMP CASEY STONER REVEALS WORSENING FATIGUE ILLNESS IS ‘DESTROYING' HIM
https://www.visordown.com/news/gene...als-worsening-fatigue-illness-‘destroying-him