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The CEO Report From the Desk of Anne Wilson
Hello to all our supporters and readers of the Emerge Australia newsletter!
Hello everyone and thank you for your patience as we prepared this edition of the Newsletter. We do apologise for missing the July edition however we do hope this one makes up for it.
So, I want to start with a HUGE thank you to our ME/CFS and long COVID community for making our end-of-financial year appeal so successful! With your support, and that of a generous donor who matched donations, we exceeded our target!
To everyone who donated, shared a post, encouraged others to donate and supported the campaign, we can’t thank you enough... |
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Multidisciplinary in-home support for people with Severe ME |
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On Severe ME Day, Friday 8 August, Emerge Australia’s Symposium shone a light on the hidden struggles of people living with severe ME/CFS and their carers. Through personal stories, we heard how accessing safe in-home care, navigating the health system, and managing daily life can be overwhelming.
Almost 100 people registered for the event, where the panel shared powerful personal stories of their day-to-day experiences of living with and caring for someone with Severe ME. They also discussed the medical care they have received and what additional in-home supports would assist them. The recording, as well as lived experience from our community, is available now on our website. |
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NHMRC ME/CFS Clinical Guideline Committee Announced! |
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Emerge Australia is excited to share that Simone Eyssens, our Research Director, has been appointed to the NHMRC ME/CFS Guideline Development Committee.
Simone lives with severe ME/CFS and has been involved with ME/CFS advocacy since 2015. We are confident that Simone will represent the needs and concerns of the ME/CFS community in this process and are proud to support her in this work. You can read more about Simone here.
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ME/CFS on "Jack the Insider" Podcast
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In early July ME/CFS advocate and carer, Pete McCluskey joined Jack the Insider on his "Conditional Release Program" podcast, for an in-depth conversation covering critical issues affecting people with ME/CFS.
They talked about:
- Living with ME/CFS
- The recent SBS Insight episode
- Harm caused by Graded Exercise Therapy (GET)
- RACGP’s outdated HANDI guide
- Updating Australia's ME/CFS clinical guidelines
- Chronic lack of Federal funding.
Jack did a fantastic job navigating this complex story with insight and care.
Have a listen and help us spread the word—awareness drives change. Listen wherever you get your podcasts. |
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Community member Abby is excited (and quite nervous!) to share that she will be running in the 2025 TCS Sydney Marathon on August 31st to raise funds for Emerge Australia! Abby is aiming to raise $600 with all donations going to Emerge Australia, no matter how big or small! We wish Abby the best of luck for the 42.2km! |
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Crafting for a Cause: Crafty Adventures Raises Nearly $10,000! |
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Crafty Adventures, a business dedicated to nurturing creativity through cruises and tours with craft workshops, recently held a virtual morning tea fundraiser and raised an incredible $9540! Members of the Crafty Adventures community all over Australia gathered and worked on their projects while learning about the valuable work that Emerge Australia does, and hearing from Tracey Collins (Crafty Adventures founder Jo Patton's sister who is living with ME/CFS).
For many people living with chronic illness, creative outlets like crafting and art aren’t just hobbies—they are vital tools for self-expression, connection, and managing daily challenges. Crafty Adventures was founded with these values in mind, creating inclusive spaces where creativity and community flourish. The Crafty Adventures ethos of "Relax, Create, Escape" aligns with our mission to provide support for those living with ME/CFS and long COVID, and provides a low impact holiday experience. For more about Crafty Adventures visit: www.craftyadventures.com.au and https://www.facebook.com/groups/craftyadventures |
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On the last day of the recent school holidays, two boys from the central NSW coast juiced 15kg of oranges and sold cups of orange juice to raise funds for Emerge Australia!
Their Mum is currently working through a diagnosis of ME/CFS and they wanted to support our work.
Every dollar raised really does go to underpin the services and programs we run including our free Telehealth service. If you would like to run a fundraiser we have a handbook available on our website. |
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ABC Nightlife: Understanding Chronic Fatigue |
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Listen to ABC Nightlife, presented by Lisa Pellegrino, as the first segment of the program delves into groundbreaking developments in understanding myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Speaking with Emerge Australia CEO Anne Wilson and Dr Richard Schloeffel OAM, they discuss the DecodeME study and how this research may change perceptions, treatment options, and the broader understanding of ME/CFS. |
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Key Genetic Insights From Preliminary DecodeME Results |
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Emerge Australia's Team have written a summary of DecodeME's findings, FAQ and information about how you can participate in ME/CFS research. Visit our website below to read this important information. |
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SBS Insight Invisible Illness – Statement By 4 Studio Participants |
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A joint statement written by a group of individuals who participated in the recent SBS Insight episode on invisible illness. They united in their deep concern over how the episode was produced, edited, and presented and the serious harm it caused by misrepresenting ME/CFS and its impact on the wider chronic illness community.
The public statement outlines how SBS breached multiple clauses of its own Code of Practice. |
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Sarah Vizer Imagine Podcast Series |
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Sarah Vizer, Author, Executive Coach and ME/CFS Marathoner, sits down with Anne Wilson in this five part series drawn from her book "Too Tired to Think" - Chapter 1 - Marathon of Recovery
- Chapter 2 - Your New Normal
- Chapter 3 - Grief, Dark Days and Keeping Hope Alive
- Chapter 4 - Your Medical Maze
- Chapter 5 - What Comes Next?
Listen via our website or wherever you get your podcasts. |
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Strengthening Culturally lnclusive Care for ME/CFS and long COVID |
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Emerge Australia recognises that the needs of people with ME/CFS and long COVID are not equally understood or met, particularly among Aboriginal and/or Torres Strait Islander peoples and Culturally and Linguistically Diverse (CALD) communities.
In the coming years, we’ll focus on improving the visibility, voice, and access for these communities. Read more about our plan and how you can provide feedback on our website. |
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As school heads back for the second half of the year, a reminder of our “return to school” guide for people with energy limiting conditions like ME/CFS and long COVID. Our guide will help you to: - Know your child or young person’s rights at school
- Develop helpful adjustments to manage school within the limits of their ME/CFS or long COVID
- Talk with your school around your child or young person’s ME/CFS or long COVID, how it affects them and what they might need.
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Community Advisory Panel Launches |
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After being overwhelmed by the number and quality of nominations for our pilot of the Community Advisory Panel, we are excited to announce that the Panel is now live!! The Panel will initially focus on Emerge Australia's advocacy priorities and will be evaluated. |
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NDIS: Pricing Changes Affect Our Community |
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The NDIS Annual Pricing Review 2024 – 25 and 2025 – 26 pricing have just been released. These changes will compound the inequities people living with ME/CFS already face. Those that rely on the NDIS, will be further disadvantaged.
Emerge Australia wrote a statement on what is changing and calling on the NDIA to make changes that would assist our community. |
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Research Digest 119th Edition |
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This month’s Research Digest highlights new studies advancing our understanding of ME/CFS, long COVID, and related conditions. An Australian POTS study reveals that women experience more severe symptoms and longer diagnostic delays than men. A long COVID Belgian study links severe fatigue symptoms with signs of accelerated ageing and cardiac involvement, while a Harvard-led analysis of severely ill ME/CFS patients, identifies unique gene patterns supporting its classification as a neuroimmune disease. We also feature a powerful personal piece by journalist Zoe Simmons, advocating for greater visibility and support for those living with chronic illness and disability.
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July International Research and Advocacy Roundup |
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Our International Roundup provides a brief snapshot of some of the ME/CFS and long COVID research funding, clinical care and advocacy actions around the world. In the last few months topics include;- PolyBio Foundation, founded by Amy Proal and Michael van Elzakker, held a Symposium in May, during which researchers provided short 10-minute updates on their projects. More than 30 researchers participated in the symposium.
- A property developer in Germany is planning to build a housing project specifically for people with severe ME/CFS who require 24 hour assistance. These apartments will be specially designed to meet the needs of the residents, with sound proofing, good ventilation and full blackout, no steps, and good temperature control.
- The Associated New Zealand ME Society (ANZMES) has been running a petition calling on the New Zealand government to stop reducing social security benefits for people who are hospitalised. The petition is open to anyone around the world to sign.
- Anil van der Zee, Dutch patient living with severe ME/CFS, has directed a new documentary, called “Doctors as Patients”. The documentary features five Dutch doctors who developed post-infection conditions like ME/CFS, long COVID or chronic Lyme disease, and asks them about their experience of becoming patients.
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Learn With Emerge Australia & Bateman Horne Center |
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Working together to elevate the standard of care worldwide. These modules provide practical tools for managing PEM, pacing, and orthostatic intolerance, while offering caregivers and clinicians valuable insight into the lived experience and support needs of patients.
What You’ll Find in These Modules:- Gentle guidance to help you better understand your unique illness experience.
- Tools to develop a pacing plan that can reduce the frequency and severity of PEM.
- Practical strategies for modifying, delegating, or adapting activities.
- A supportive framework for rest and recovery that respects your energy limits.
- Resources to help patients, caregivers, and clinicians work together.
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Join a Live Education Session! |
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Join free live education sessions with Emerge Australia. These sessions would benefit people who live with ME/CFS, long COVID and their supporters and cover topics including;- Post-exertional malaise - 16 September, 2pm (AEST)
- Disability Support Pension Q&A - 26 August, 2pm (AEST)
- National Disability Insurance Scheme (NDIS) Q&A - 10 September, 2pm (AEST)
- Pacing and the heart - 30 September, 2pm (AEST)
- Sleep - 14 October, 2pm (AEDT)
- Pain - 28 October, 2pm (AEDT)
- Pacing and Orthostatic Intolerance - 18 November, 2pm (AEDT)
- Brain Fig - 25 November, 2pm (AEDT)
This is your chance to ask questions and receive additional guidance on what you've learned. Don’t miss out on this opportunity to deepen your understanding and improve your wellbeing. Click here to register and join a virtual session |
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Telehealth Service Reminder |
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Emerge Australia offers a National Telehealth Support and Information Service led by Registered Nurses and Support Staff who are available from 9am to 4:30pm (AEST), Monday to Friday. This free service is here for individuals with ME/CFS and long COVID, carers, healthcare practitioners, and supporters (Please note: we are not a crisis hotline and cannot provide direct advice on clinical or medical treatments).
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Members give us our drive and direction as an organisation. Becoming an Emerge Australia member means that it’s a little bit easier for us to keep you connected and up to date with our work. |
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A donation to Emerge Australia is an investment in supporting people suffering from ME/CFS and helping to end the misunderstanding around the illness.
Your support is vital for Emerge Australia to continue to raise awareness and to provide much-needed services and programs. |
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Emerge Australia works to support people throughout Australia living with and impacted by ME/CFS and Long COVID through GP Education; Advocacy; Biomedical Research and Patient Support and Information. We acknowledge the Traditional Custodians of country and their connections to land, sea and community and pay our respect to Elders past and present, noting their continuing contributions, struggles, and achievements. We recognise that Aboriginal and Torres Straight Strait Islander self-determination is a human right, and we honour their resilience and determination across many generations of peoples who have fought for this right to be upheld. This always was and always will be Aboriginal land. We understand sovereignty has never been ceded. We welcome everyone. Our aim is for everyone to feel accepted, safe, affirmed and celebrated. We recognise diversity of culture, ethnicity, faith and spiritual beliefs, age, sexual orientation, gender identity/expression (LGBTIQ+), intersex status, socio-economic status, abilities, relationship status, and lived experience. 
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