Australia: News from Emerge Australia

April 25, 2024

Research Digest | Issue 105

Welcome to the 105th edition of Emerge Australia’s Digest. In this month’s issue, we delve into a single-cell RNA sequencing project aimed at understanding the impact of exercise on PEM in individuals living with ME/CFS. Furthermore, we feature a review highlighting the parallels between ME/CFS and Long COVID, along with a media report emphasising the urgency for increased research into Long COVID in Australia. Be sure to take advantage of the recently implemented ‘text-to-speech’ technology for the Digest summaries – Just click the button pertaining to the summary below, and the research summaries are read to you.

Contributing Digesters: Solène, Shan and Simone.

Digest Editor: Simone Eyssens.

https://www.emerge.org.au/researchdigest/research-digest-issue-105/

 

ME/CFS Awareness Week 2024 Symposium

• 1-hour symposium. Hosted by CEO Anne Wilson and with presentations from Prof. David Putrino, Dr Mark Donohoe and Dr Steven and Tori Sommer. Each of these presenters were asked to focus on “STOP” when discussing their fields of expertise. Following the presentations, questions from some the 130 people in attendance were answered.
• Text summary and video recording:
• https://www.emerge.org.au/me-cfs-awareness-week-symposium-2024/

 

"August 2024 International Research & Advocacy Roundup" from Emerge Australia

https://www.emerge.org.au/news/august-2024-international-research-and-advocacy-roundup/

Our International Roundup provides a brief snapshot of some of the ME/CFS research funding, clinical care and advocacy actions around the world in the last few months, topics include;

· ME/CFS Awareness week recognition around the world

· The US National Institutes of Health’s ME/CFS Research Roadmap

· The Organisation for Economic Co-operation and Development (OECD) has published a report into the impact of long COVID in OECD countries.

· The US Bateman Horne Center's new videos on post-exertional malaise and staying within your energy envelope

 

Carer podcasts - Season 5

For many in our community, carers make a huge difference; they are often unpaid loved ones, such as grandparents, mothers, fathers, sisters, brothers, partners, children and friends. Carers are often unseen by the community, so we are honoured to be able to share these powerful stories from carers’ lives.

The season has now concluded and included the following guests:

• Ms. Helenni Bargiatakis - State Manager of Carer Gateway Victoria
• Kate Baychek - carer for her bedbound, adult child
• Lynne Harris - carer for her oldest son, who is bed bound
• Jenny Meagher and Pete - Jenny lives with ME/CFS and they care for their adult daughter
• Tori Sommer - carer for her husband
• Mark Clisby - Emerge Australia Chair and carer

The latest season of the Emerge Australia Imagine podcast is currently available from wherever you listen to podcasts or via our website. Watch out for further details on socials and subscribe to the Emerge Australia Imagine podcast series. Previous episodes include an impressive array of guests from people with lived experience to clinicians, researchers, allied health professionals and media personalities, among others.

https://www.emerge.org.au/series/emerge-australia-imagine-podcast-series/

 

This list is a lot longer than when I last looked:

Emerge Australia offers official position statements on specific subjects of relevance to the Australian ME/CFS community and Health Professionals.

https://www.emerge.org.au/position-statements/

 

The next meeting of the Federal Parliamentary Friends of ME/CFS is happening soon!

SAVE THE DATE! Join with us, as we work towards advancing the needs and rights of those living with ME/CFS.

️ Date: Monday, 18 Nov, 11am – 1pm AEDT
Location: Australian Parliament House, Canberra

Be part of this growing movement for real change and recognition for those affected by this disabling condition. If you would like to attend in person as spaces are limited, please register your interest here https://vist.ly/3mjmjjw

We are committed to enabling you to join online from your home, details will follow.

#MECFS #Advocacy

 

Longer post from Facebook:


GPs, Did You Miss Our Live Webinars Earlier This Year?

Now is your chance to join , Dr Mark Donohoe, for a series of two RACGP CPD approved webinars as he unpacks his approach to assessment, diagnosis and management of ME/CFS.
Plus, learn how he applies his unique insights from his decades of experience to long COVID.
These free sessions will be recorded and available to view after the live event.

Topic: ME/CFS and long COVID: An evidence-based approach for General Practice
When
Webinar 1: Assessment and diagnosis 6pm, Monday 25 November, AEDT
Webinar 2: Management of common symptoms and co-morbidities 6pm, Monday 2 December, AEDT
Where: Online . Click HERE to learn more and register: https://vist.ly/3mjfi8c

These webinars are specifically developed for General Practitioners working within the Australian healthcare system.
The content may also be helpful for other healthcare practitioners, and we welcome international colleagues.

Not a GP? Please share with your GP or other healthcare professional.

Each activity is pending RACGP approval for 1.5 EA CPD hours.
Proudly supported by the John James Foundation.

 

"This is CFS Art: Chronic Fatigue Syndrome explained by artists with lived experience of ME/CFS"

https://thisiscfs.art/

Introduction from Emerge Australia e-newsletter

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It’s a cliche but it’s true: “A picture is worth a thousand words”.

People who have ME/CFS often ‘drop out’ of work, social engagements, hobbies, and their friend groups. As they are forced to stay in bed or at home, they become invisible to society at large.

This inspired Emerge Australia community member Zoe Wright to launch an online art exhibit for people living with ME/CFS to express their experiences through art and view art created by others living with ME/CFS.

Are you living with ME/CFS and express yourself through art?

 

November International Research and Advocacy Roundup

Our International Roundup provides a brief snapshot of some of the ME/CFS research funding, clinical care and advocacy actions around the world in the last few months topics include;

US Children’s National Hospital and National Institute of Allergy and Infectious Diseases symposium “A New Paradigm: Infection-Associated Chronic Illnesses Affecting Children”

ANZMES' (Associated New Zealand ME Society) brief guide for healthcare professionals to manage hospital stays for people with severe ME/CFS or long COVID.

#MEAction and the long COVID Patient-led Research Collaborative's four videos focussing on post-exertional malaise.

World ME Alliance's Safer Hospital Care for Severe ME/CFS campaign for Severe ME Day on August 8.

https://www.emerge.org.au/news/november-2024-international-research-and-advocacy-roundup/

 

Preparing for the Holidays

As we head towards a busy time of year, many in our community look for ways to manage with the limited energy they have. We also know that these times of year can be difficult for many, with reminders of what you can’t do, missing out on experiences, and challenging family and relationship dynamics.

It is for this reason that Emerge Australia has put together some information to help, including;

Planning ahead
Conserving energy
Nutrition and hydration
Emotional well-being
6 simple tips for a safer air holiday gathering

https://www.emerge.org.au/news/preparing-for-the-holidays/