Welcome to the 100th edition of Emerge Australia’s Research Digest! To commemorate the milestone of our 100th issue, we’re shining a light on Emerge Australia’s own contribution to ME/CFS (and now long COVID) research, with the launch of AusME, the new Australian ME/CFS and long COVID Registry and Biobank.
This months Contributor and Digest Editor: Ms. Simone Eyssens
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Welcome to the 100th issue of Emerge Australia’s Research Digest!
Emerge Australia has been publishing our Research Digest since April 2018, as part of our commitment to supporting and promoting ME/CFS research. Through our digest, we have worked to bring ME/CFS research to a wider audience and shine a light on key research findings. Over time, our readership has grown and we now have subscribers all over the world!
Emerge Australia’s Research Digest wouldn’t be possible without our dedicated team of volunteer digesters, who diligently review and summarise research papers into bite size pieces every month, to help our readers keep abreast of the latest research developments. We would like to take this opportunity to thank them for their efforts!
To commemorate the milestone of our 100th issue, we’re shining a light on Emerge Australia’s own contribution to ME/CFS (and now long COVID) research, with the launch of AusME, the new Australian ME/CFS and long COVID Registry and Biobank.
Launch of AusME: Webinar
Last week Emerge Australia’s CEO, Anne Wilson, hosted a webinar to launch AusME. She was joined by Emerge Australia’s Medical and Scientific Advisory Committee Chair, Professor Paul Fisher, the Chair of the Mason Foundation, Professor Peter Schofield AO and our Research Manager Dr Michelle Tavoletti, and our AusME Registry and Biobank Manager Dr Jessica Kauhausen. AusME is wholly Australian, developed by Emerge Australia’s own team, building on their experience with managing the You+Me Australia registry. In addition to Australian adults with ME/CFS and healthy people, AusME will also include young people (aged 12+) and people with long COVID.
Watch the webinar: http://youtu.be/zYZL02UbnZw?si=beFGEk2BzdozyARc
Emerge Australia live-tweeted the event and you can read the thread here:
http://x.com/emergeaus/status/1714839278952628703?s=61&t=b9Vqd3KzHLWAa–KvLht3w
Join AusME here: http://ausmeregistry.org.au/
AusME poster presentation: Victorian Agency for Health Information (VAHI) long COVID Conference
Emerge Australia was proud to have been invited to contribute a poster presentation introducing AusME at the recent long COVID conference in Victoria. AusME is unique in Australia, allowing the comparison of ME/CFS and long COVID, for a better understanding of both conditions. As the first long COVID conference in Australia, our poster presentation allowed researchers and key policy makers to see the benefit and value of this unique resource.
Victorian Agency for Health Information (VAHI) long COVID conference
The VAHI long COVID conference included presentations on the biology of long COVID, models of care, and the health economic impacts of the condition. It was notable that the conference also included presentations from people with lived experience of long COVID, describing how the condition impacts their lives. A research highlight of the conference was the presentation of data from Victoria’s long COVID Health Survey, which included responses from 13,000 Victorians. The survey found that 1 in 7 Victorians met the criteria for long COVID at the time they completed the survey.
Despite only launching last week, AusME has already attracted media attention!
Patients with complex post-viral illnesses encouraged to participate in research project
Publication: ABC News (video interview)
Link: http://www.abc.net.au/news/2023-10-19/patients-with-complex-post-viral-illnesses,/102996504
Long covid debuts on ME/CFS registry
Author: Woodrow L
Publication: Medical Republic
Link: http://www.medicalrepublic.com.au/long-covid-debuts-on-me-cfs-registry/100812
Call for long COVID sufferers to join research effort
Publication: Australian Seniors News
Link: http://australianseniorsnews.com.au/health/call-for-long-covid-sufferers-to-join-research-effort/