Australia: News from Emerge Australia

Andy

Andy

Retired committee member
Post on Facebook from Emerge.
We are absolutely thrilled to announce that we have received $370,000 in Federal Funding. This is the largest Federally funded grant that has been committed to a support organisation working in the ME/CFS space.

The Federal funding is in the form of tied grants which will be directed towards the following specific programs:

• $80,000 to support our Information Line
• $80,000 on developing knowledge and infrastructure around support services
• $60,000 to conduct a detailed Australian ME/CFS “health and wellbeing” survey
• $150,000 on an international research symposium, to be held in Australia in 2019

We truly believe that this funding will help Emerge Australia to make a difference in the lives of people with ME/CFS.
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https://www.facebook.com/EmergeAustraliaInc/videos/10156541270639111/

 
Australia - Inside Melbourne's Ross House, a heritage building filled with charitable souls
There's a five-storey building in Melbourne's Flinders Lane that's known as Ross House.

You may have seen the 119-year-old red brick tower tucked alongside the city library, close to the cafe-laden laneway of Degraves Street.

It's prime CBD real estate.

But behind the heritage-listed facade is a unique community working to create a better future for society's most marginalised people.

Ross House is the only self-managed and community-owned not-for-profit building in Australia.

There's no landlord. No external owner.
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Dr Heidi Nicholl, Emerge Australia

"We work with people who have myalgic encephalomyelitis, also known as chronic fatigue syndrome.

"About 25 per cent of people with the condition are so severely unwell that they're housebound or bedbound.

"The stigma for this disease has been very profoundly problematic for this community.

"Historically people have not been believed, they have had problems getting the sympathy they should have, not just from family but from medical professionals.

"There's not enough treatments, and then they haven't really had enough hope that things are actually being researched and that people care enough about this to find therapies or a cure."
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https://www.abc.net.au/news/2019-01...-heritage-listed-non-profit-building/10610824
 
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Article - Dr Heidi Nicholl explains what we need to know about chronic fatigue syndrome - 7News June 2019

"When people have MECFS, what most people are really surprised to hear is that about 25 per cent of people with it are either housebound or bed-bound," said CEO of Emerge Australia Dr Heidi Nicholl.

"It's a chronic, complex condition, and people can be unwell for a really long time, with an array of symptoms."

Previously, there had been debate about whether MECFS was real - but research has legitimised the condition.

"It's a real biomedical illness. The problem is it's been chronically underfunded for research," Nicholl said.

"What we're finding is there are underlying biological differences with patients who have the condition.

"There's widespread brain inflammation, and substances in the brain like lactate, which shouldn't be in there. So there's a whole line of research pursuing the brain chemistry.

"Research at the intracellular level is also finding that the mitochondria aren't working as they should be."

Potential triggers
While the cause for MECFS is unknown, researchers have found there are certain triggers.

"What we often hear is that this starts with a viral infection, and they just don't recover from it," Nicholl said.

"There can also be physical traumas - something that puts the body under an extreme amount of stress - and they just don't get better."

Gender gap
Women are two to four times more likely than men to have CFS.

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

"There are actually other illnesses where the statistics are similar - other immune-inflammatory diseases like lupus and multiple sclerosis all affect more women than men.

"At the moment, we don't know enough about the biology to see what's happening - but we do know there are some differences."

Managing the condition
Nicholl said the worst thing a CFS sufferer can do is try to push through the exhaustion.

Rather, those with the condition should try to make sure their energy expenditure is even, to avoid flare-ups or crashes.

"The biggest things are resting and pacing," Nicholl said.

"What we say to people is try and stay within the energy envelope, and just try and manage that."
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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?)
 
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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.
 
MeSci said:
"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!
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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

AGENDA

  1. Welcome
  2. Apologies
  3. Confirmation of the minutes of the last Annual General Meeting held on 15th November 2018
  4. To receive and consider:
    1. The President’s Report
    2. The CEO’s Report
    3. The financial statements for the year ended 30 June 2019
    4. To announce the appointment of the Executive Officers and General Committee Members of the Association and, if necessary, to conduct any necessary ballot
  5. To conduct any special business of which notice has been duly provided in accordance with the Rules of the Association
  6. To pass a vote of thanks to all those who have volunteered their services for the benefit of the Association in the year under review.
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All financial members of the Association are entitled as of right to attend the Annual General Meeting either in person or by proxy. The form of proxy accompanies this notice. Completed proxy forms must be returned to the Secretary at Ross House, 247-251 Flinders Lane, Melbourne no later than 48 hours before the meeting.
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https://emerge.org.au/notice-of-2019-annual-general-meeting/#.XVauMrjk_CM
 
Tonight’s episode of Nightlife on ABC Radio will feature an hour-long segment on ME/CFS, from 10pm-11pm. The segment will include interviews with Emerge Australia Inc CEO Heidi Nicholl, Head of La Trobe University’s Microbiology Department, Professor Paul Fisher, and patient Fiona.

You can listen live from 10pm (AEST) or listen to the podcast when it is uploaded after the show goes to air.

https://www.abc.net.au/…/progr…/nightlife/nightlife/11451178
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Is there anyone who can give a condensed highlights? The broadcast is 4 hours long.
 
Snowdrop said:
Is there anyone who can give a condensed highlights? The broadcast is 4 hours long.
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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.
 

AUSTRALIA'S #1 ONLINE CPD EDUCATION PLATFORM

Busting the myths and redefining myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
ME/CFS is a complex, chronic, debilitating disease with systemic effects, which is estimated to affect up to 250,000 Australians. This module aims to educate GPs and others working in the primary care space about our evolving understanding of ME/CFS as an illness, and looks at some of the myths surrounding diagnosis and treatment.

On completion of this education activity participants will be able to:
  • Be aware of the latest developments in our understanding of the pathophysiology and resulting management of ME/CFS.
  • Understand the benefits for patients of timely diagnosis of ME/CFS.
  • Accurately diagnose ME/CFS based on the latest guideline recommendations.
  • Implement a coordinated treatment plan to effectively address ME/CFS in general practice.
  • Access and utilise tools and resources for optimising outcomes in patients with ME/CFS.
This activity is sponsored by Emerge Australia.
Content partners:
Emerge Australia
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https://www.thinkgp.com.au/education/mecfs
 
Andy said:
Unfortunately won't play for me.
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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.

 
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!
 
Simone said:
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.
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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.
 
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