Australia: News from Emerge Australia

Not the best audio, but good enough. Otherwise a good talk.

Broadly speaking they know their stuff, and have clearly listened to patients.

 

From an email:
"AGM Details

• Thursday 1 December 2022
• 6pm onwards (Australian Eastern Daylight Time)
• via Zoom (registration link below)

Official Notice for Emerge Australia Inc. Annual General Meeting

How do I participate in the virtual AGM?
The video conferencing website, Zoom, will be utilised for the AGM, enabling members to attend from home. All you need to do is sign up for a free account at zoom.us

Once you have created an account with Zoom, you can then register to attend the AGM via the link below.

Register to attend Emerge Australia's virtual AGM
Please note. There is a limit on the number of attendees who can register to attend the virtual AGM, due to Zoom license limitations.

The AGM meeting will open with a waiting room from 5.50pm. Please allow some time to login and access the meeting if this is your first time using Zoom.

Please note. Emerge Australia staff are unable to provide IT or technical support for members to attend the meeting. We suggest you review the available how-to resources on the Zoom website.

Nominating a proxy
To nominate a proxy please complete the relevant form and returned it to the Secretary at Emerge Australia, Level 7, 276 Flinders Street, Melbourne VIC 3000 or by email to: laura.kool@emerge.org.au no later than 48 hours prior to the AGM.
Proxy nomination form"

I'm not sure whether there will be any way to vote other than via a proxy if attending by zoom.

 

From an email:

Be a part of designing our new brand!

Would you believe our current logo and brand are nearly 10 years old? We think it’s time for an update.
We want to make sure the way Emerge Australia looks, sounds, and feels truly reflects the people we support and we're partnering with Nova Diem to bring this project to life.

We designed our previous logo and brand in 2014. Feedback from the sessions we ran helped us inform how our logo looked, our general colours and text, and even the way we communicated our information to you. We'd love for you to help us do that again.

Take the survey below to put your stamp on our new look and feel. It will take about 5-10 minutes and will be confidential and anonymous, but will help us understand how we can best represent ourselves to you.

Thank you for participating!
Link​

I think the idea of a rebranding is terrific. The current butterfly logo is not great. I found the survey a bit annoying, but I hope lots of our members will give their thoughts. I suggested the blue flax lily as a symbol - has pretty blue flowers and berries, is resilient, grows across Australia, traditionally used for making ropes and baskets. The latter seemed appropriate, baskets of knowledge, ropes for making connections. (It's not a European flax.). I hope Emerge takes the opportunity to rename the organisation - Emerge doesn't mean much.

 

Dr Schloeffel is ...alternative. The link in the quote below takes you to a discussion when his appointment as Emerge's Medical Director was announced.

I'm still despairing about this. At a time when we need a stringently scientific medical person representing Emerge to take on the BPS crowd as they are coming out fighting, we have Dr Schloeffel.

 

A new guide by Emerge:
"Caring for people with ME/CFS who are bedbound" (2023)

 

New Emerge symbol is launched, and general website rebrand
https://www.emerge.org.au/

 

I wasn't sure what I thought, but I think I agree with you @Pilk. I certainly don't think it's a triumph, the website looks clunky to me with cluttered pages. In particular I find legibility a problem. I know that they have considered the issues some people with ME/CFS have with light sensitivity, but I'm not sure that what is done here helps? I don't like light text on a dark background. And I don't like the way boxes sort of swim into view unbidden - it's quite an active screen.

Also, I have had problems with the website loading. It seems to take a long time and get stuck sometimes.

 

None of the movement is necessary or desirable, using a picture as background makes some of the text hard to read. They serve people who are likely to have cognitive difficulties.

The format should be as clean and uncluttered as possible.

 

??

It's this study:
The relevance of pacing strategies in managing symptoms of post-COVID-19 syndrome
Authors: Ghali A, Lacombe V, Ravaiau C, Delattre E, Ghali M, Urbanski G, Lavigne C (Angers University Hospital, France)

Of course we have a thread on it:
The relevance of pacing strategies in managing symptoms of post-COVID-19 syndrome 2023, Ghali et al

Edit to add: The Emerge summary says

However the study was not good enough to be concluding that this is evidence that pacing works. We can't assume that reported pacing adherence is accurate, or that it causes recovery rather than is a result of recovery. It's a lot easier to not crash when you are well than when your threshold for PEM is low. I think we need our ME/CFS charities to be pointing this out. As @Jonathan Edwards says on the study thread, if this study starts getting cited as evidence of pacing, we aren't any better than the BPS people.