Discussion in 'News from Organisations' started by Andy, Jul 17, 2018.
Emerge have published their strategic plan for 2021-2024
PDF file, https://www.emerge.org.au/Handlers/Download.ashx?IDMF=c5453685-bcb5-4ecd-a496-c53dd7fefb30
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.
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.”"
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.
Damn. Heidi will be greatly missed.
Yeah, she really will. Big shoes to fill.
"The Australian You+ME registry and symptom tracker app is now open! This is our first, critical step to our fully-operational Mason Foundation-funded ME/CFS Biobank, developed with Solve M.E. Read more and signup here: emerge.org.au/blog/you-me-re… "
Separate names with a comma.