Australia: News from Emerge Australia

It looks very good - there's a lot in there. Key aims include getting good guidelines and ongoing efforts on research (including the biobank) and education.

Some initial responses:

I note that there is an aim to serve every Australian. I'd like to see some research into the prevalence of ME/CFS in indigenous Australian populations. Emerge might be able to secure some funding for that - there might be funding pools specific to those populations - and could work with indigenous health researchers already working successfully in their communities. I think it's an area where very little has been done. There could be interesting similarities and differences. The act of doing the research could have a big impact on Emerge's education aim too.

I didn't see a mention of Long Covid. I would have thought a key aim for ME/CFS charities over the next 3 years will be to make the most of the visibility of post-viral syndromes created by Long Covid and ensure equality of care for both Long Covid and ME/CFS. I know Australia won't have many cases, but I still would have thought Emerge could and should be positioning itself as the organisation to go to to get reliable information about Long Covid.

The aim to create a centre of clinical expertise is a challenging one. I imagine it might be hard to not get drawn in to providing care that isn't evidence based if there are partnerships with some existing 'ME/CFS experts'. But, if starting from scratch, the service might end up alienating those ME/CFS specialist clinicians and the patients who support them, and fracture the ME/CFS community. Yeah, a pretty challenging task. Perhaps Katherine Rowe would be a good person to work with?

I'm glad to see a stated ambition of working to achieve a unified voice for Australian and NZ ME/CFS organisations. Personally I'd like to see Emerge's territory covering New Zealand - there are Australian states with bigger populations than NZ has, and medical colleges typically cover both countries. Economies of scale would make that a good move and ANZMES here is virtually dead. (Although the Emerge name would be a problem - Emerge Aotearoa is a provider of mental health services). I've always wondered about 'Emerge' as a name for an ME/CFS charity - it sounds a bit directive, as in 'Get off the couch and out of your home, and engage with society!' The Australian MS charity is MS Australia - it's immediately obvious what they are about and where they operate, there's no separate step needed to explain what the charity is about.
 
Research Interview: Professor Ken Walder

Australia’s National Health and Medical Research Council (NHMRC) last year allocated $3.3 million for ME/CFS research. That money was split three ways, and a third of it went to a man named Ken Walder.
....
“My motivation is around understanding metabolism,” Walder says.

Previously, Walder worked in diabetes and obesity, two diseases where metabolic issues are central to the problem. He is fascinated by mitochondria.

“Our hypothesis … is there may be a systemic problem with the ability of the mitochondria to produce the energy the body needs to function and that leads to feelings of fatigue as well as some of the other symptoms people with ME/CFS get,” he says.

https://www.emerge.org.au/blog/professor-ken-walder
 
This reminds me of what @Jonathan Edwards has been saying
"“In the past in ME/CFS research, which has been really underfunded for a long period of time, people do what they can. People have taken white blood cells,” he says. “The problem with that is white blood cells are not a highly energetic cell. They spend most of their time just cruising around in a fairly relaxed phase.”"
 
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No date on this 'latest news' item, but it is rather sad for the ME/CFS community throughout Australasia.
Heidi and her team have certainly raised the bar for support & advocacy organisations in this part of the world. I am grateful for what has been achieved.
A huge thank you to Dr Heidi Nicholl

The CEO of Emerge Australia, Dr Heidi Nicholl, has today announced her resignation after more than 3 years in the role.

In acknowledging her exceptional contribution and performance as CEO, Emerge Australia Board Chair, Mark Clisby, highlighted Dr Nicholl's untiring advocacy and drive for improving all aspects of the ME/CFS environment - research, public and health policy, diagnostic and clinical frameworks, access to better and more appropriate services, community education, and above all advice and support for people with ME/CFS and their carers in Australia. “Dr Nicholl leaves Emerge Australia in a very much stronger and more sustainable position and on behalf of the Board, staff, volunteers and the ME/CFS community I thank her for her leadership and commitment.”

During her time at Emerge Australia, Dr Nicholl has strengthened Emerge Australia’s role at a national level; advocated strongly for systemic reform at all levels of government, and for improved access to better healthcare for people with ME/CFS; lobbied for increases in community support and to drive more biomedical research into ME/CFS; and introduced a range of community, national and international events and initiatives that aim to increase awareness of ME/CFS as a biomedical illness.

Particular contributions have included establishing a telehealth nurse service, GP Education program, appointment of the first Emerge Australia Celebrity Ambassador, MotoGP World Champion Casey Stoner and a professional, twenty-first century ready InfoLine for enquiries. Dr Nicholl has built strong relations with a key group of philanthropic supporters and also secured a range of research related partnerships, funding and projects including a $1million grant from philanthropic trust, the Mason Foundation, to establish the first Australian ME/CFS biobank and patient registry, and the launch of the Open Medicine Foundation Australia (OMF Australia) in late 2020, following a fundraising partnership with OMF.

Dr Nicholl leaves Emerge Australia in mid-May and has accepted the newly created role of CEO at Humanists Australia.
Click to expand...
https://www.emerge.org.au/blog/dr-heidi-nicholl
 
It is interesting that Emerge have switched focus from having a scientist with management experience as CEO to a manager with some health charity experience. Will Emerge also appoint a scientific/medical officer of some sort? Can they afford both?
I hasten to add that I'm not judging this as either a good or a bad move, just curious about the apparent difference in emphasis.
 
I read a recent article in Bike, a UK motorcycle magazine about Casey Stoner.

He is, I believe about 35. What was brought home to me again, is how many decades have been frittered away doing worse than nothing for the people with this disease. Generations of people have acquired this illness, while science has stood still.
 
I assume this is kosher?
[EDIT: looks like it is.]

They seem to have released a Pacing App (saw the link on social media somewhere I can't recall now).

But the app is not mentioned on their website and the developer link given on the Google Play site goes to the non-existent https://emerge.com.au (their real website ends in .org.au).
[EDIT: The app has now been listed on the website.]

Haven't tried the app myself.
This app is designed to help people with mild to moderate ME/CFS better manage their daily energy use to improve the quality of their lives.
Click to expand...
https://play.google.com/store/apps/details?id=au.org.emerge.pacing
 
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RoseE said:
It is listed today on their website https://www.emerge.org.au/Blog/mecfs-pacing-app
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Thanks Rose. Have edited my post above.
From the blog:
We would like to introduce to you the ME/CFS Pacing App created by our generous contributor, Mathew Blake. The app is designed to help people with mild to moderate ME/CFS better manage their daily energy use and adjust their pacing habits as needed. The app is not designed to manage all symptoms that ME/CFS can cause but to help users to reduce how often they experience post-exertional malaise (PEM).

How does the App work?

The ME/CFS Pacing App allows you to log your daily activities and use its personalised “energy currency” system to better manage your daily energy. You decide how much each activity is worth within this currency to you. For example, reading a book takes a different amount of energy for each person and you chose how many points from your “energy currency” to give each activity. This allows the user to see visually where in the day they used too much energy and what days were well balanced.

[...]

We want to hear from you

Everyone’s experience with ME/CFS is different, it is important to remember that how helpful you find the app will be different from person to person. Apps always have room to improve, that’s why we would like to hear the community’s thoughts on it. You can tell us about your time on the app by clicking the button below and filling out a quick and easy survey.
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Emerge Australia sent out an email today with an update from the new CEO Anne Wilson who took over earlier this year from Heidi Nicholls. Some excerpts:

Later this week we will be launching the start of a six-month awareness raising campaign to put ME/CFS on the map. This campaign will put ME/CFS front and centre in the minds of everyday Australians, healthcare practitioners, policy makers and those most influential within our community.

When I first started as CEO, I had a number of concerns. Firstly, I was concerned about the limited media attention ME/CFS received. Secondly, the majority of important news and education about ME/CFS wasn’t reaching those outside our strong and resilient community. Finally, I was concerned by the lack of understanding among the majority of clinicians, governments and the general community regarding diagnosis and management of ME/CFS.

Now is the right time to launch a bold campaign to address these issues. Long COVID, and the many studies now published about its similarities with ME/CFS, provides us with this opportunity.

You will start hearing about this campaign in the coming days. Our aim is to build the legitimacy of both ME/CFS and Emerge Australia through a ‘disruptive’ media campaign that highlights similarities between ME/CFS and Long COVID. You can see the campaign on social media and soon in print media, in a national publication.
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Supporting Australians with ME/CFS and Long COVID: Priorities for the 2022 Federal Election

"Emerge Australia’s State of the Nation report includes five priority areas for government to improve the lives of people with ME/CFS. Click here to read the report.

In the lead up to the federal election, Emerge Australia is writing to all federal parliamentarians to seek their support for these five priority areas.

If you would like to help raise awareness of the needs of people with ME/CFS, please click here to send a copy of these election priorities to your federal parliamentarian."

https://www.emerge.org.au/blog/mecfs-priorities-for-the-2022-federal-election
 
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