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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 to all our supporters and readers of the Emerge Australia newsletter!
The last several weeks have been taken up with planning and executing our Action Forum, From Stigma to Science: Educating for change. You can read about the event further on in this edition of our Newsletter suffice to say we are delighted the forum went so well and are grateful to our wonderful speakers and participants who made the event so inspiring and informative.
In the week following our Action Forum I was asked... |
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From Stigma to Science: Educating for Change |
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A big thank you to everyone who presented and attended our ME/CFS and long COVID Action Forum: From Stigma to Science - Educating for Change, at Australian Parliament House on Thursday 30 October.
With almost 300 people registered to watch via Zoom and over 40 at Parliament House it was a powerful event.
We are now busy writing a report of the event which we will present to The Hon. Mark Butler MP and other members of parliament in the coming weeks.
If you missed the event, the full recording is available on our website, as well as snippets of the presentations.
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Making the Invisible Visible: Safer Shared Air for All |
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The Safer Shared Air: Making the Invisible Visible Conference 2025 brought together lived-experience advocates, scientists, policymakers and industry leaders to highlight why indoor air quality is fundamental to health, accessibility and inclusion. The event explored how the air we share can limit participation, especially for people with chronic conditions, and highlighted solutions such as improved ventilation, filtration and accessible infection-control standards.
Speaking on the patient organisations panel, our CEO, Anne Wilson, outlined the many forms of unsafe air that affect people with ME/CFS and long COVID, including exposure to scents, viruses and pollutants. She explained that “safer air” for our community means air that is free from fragrances, chemicals, pathogens and environmental irritants that can trigger severe symptom exacerbation. This is particularly important because many people with ME/CFS and long COVID also experience co-occurring conditions such as MCAS and multiple chemical sensitivities, which make clean, scent and chemical free air essential. |
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Congratulations Associate Professor Bernard Shiu |
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Emerge Australia congratulates Associate Professor Bernard Shiu, co-Chair of our Medical and Scientific Advisory Committee, for his appointment as inaugural Chair to the RACGP Specific Interest Group - Energy-Limiting and Post-Infection Conditions.
The Specific Interests group will create a supportive community of practice where GPs can access practical tools, case-based learning, and evidence-based resources.
Associate Professor Shiu said the new group was created to address a growing need in primary care. 'Conditions such as ME/CFS, long COVID, POTS, and fibromyalgia are increasingly presenting in general practice, yet many GPs feel under-resourced and isolated in managing them,’ he said.
This appointment marks real progress in supporting the frontline in diagnosis, management and treatment of post infection and energy-liming conditions such as ME/CFS and long COVID.
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The AusME Registry & Biobank is only two years young but already making a big impact! - 2,400+ participants
- 1.08M datapoints
- 8,300 of biosamples from 225 donors
- Collecting blood from donors in Victoria, New South Wales and Queensland
- Supporting 25+ research studies nationwide
Behind every data point is a person, and together we’re building a resource that will uncover answers, drive discoveries, and bring us closer to better treatments for ME/CFS and long COVID.
A heartfelt thank you to our participants, researchers, clinicians, and community - your contributions are powering hope and progress. Here’s to the next chapter with AusME! |
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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 on our website about our plan and how you can provide feedback. |
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Clinical Guidelines Update: Progress Toward New ME/CFS Guidance
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The NHMRC ME/CFS Clinical Guideline Development Committee held its second meeting in October 2025. This session was a training workshop to help committee members learn about the GRADE approach, a method used to assess the quality of research evidence. NHMRC uses this approach when developing all clinical guidelines.
GRADE (Grading of Recommendations, Assessment, Development and Evaluation) is recognised around the world as best practice for assessing the research evidence used to develop clinical guidelines.
Using the GRADE approach will help make sure that the new ME/CFS clinical guidelines: - Are transparent and trustworthy, with all evidence assessments clearly explained
- Weigh up both strength of the evidence and possible benefits and risk from treatments
- Take into account the values, preferences and experiences of the ME/CFS community
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Research Digest 122nd Edition |
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This month’s studies continue to advance understanding of ME/CFS, highlighting biological differences between post-infectious and gradual-onset ME/CFS, uncovering new insights into how extracellular vesicles may drive post-exertional malaise (PEM), and exploring brain metabolism changes following exercise. We also feature a large international survey on patient-reported treatment outcomes across ME/CFS and long COVID, and the RACGP’s launch of a new Specific Interest Group to better support clinicians managing energy-limiting and post-infectious conditions.
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Research Opportunity Do you live with long COVID and experience fatigue, brain fog, sleep problems, depression or anxiety?
Researchers at Deakin University are testing whether gut-based therapy (faecal microbiome transplantation, FMT) could improve outcomes for people with long COVID. What’s involved: - 5 visits at University Hospital Geelong
- 3 FMT or placebo enemas
- Blood, urine & stool samples
- Garmin watch to track activity, sleep & heart rate
- Online questionnaires you can complete at home
- Parking costs covered
Eligibility: Adults 18–65 with a long COVID diagnosis and moderate to severe symptoms. Interested? Learn more by contacting the GLOW team at CTUClinicalTrialsUnit@barwonhealth.org.au | (03) 4215 3078 |
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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;- Pacing and Orthostatic Intolerance - 18 November, 2pm (AEDT)
- Disability Support Pension (DSP) Q&A - 26 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. |
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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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Need help applying for the NDIS or DSP?
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Emerge Australia has created free, self-paced learning modules to help people living with ME/CFS and long COVID navigate the process of applying for the National Disability Insurance Scheme (NDIS) and Disability Support Pension (DSP).
You’ll learn: - About the NDIS and DSP
- Eligibility criteria
- Evidence needed for a strong application
- Specific tips for people with ME/CFS and long COVID
The modules also include: - A recorded video presentation
- Downloadable worksheets and templates
PLUS: After watching the recorded presentation, you can join our live 45-minute Q&A sessions for extra support. Our support team will guide you through the templates, answer your questions, and share tips – a great way to learn from others going through the same process. |
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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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Introducing Betty the Battery
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Say hello to Betty the Battery, Emerge Australia’s mascot and your energy-support companion!
Betty is here to symbolise hope and resilience for all of us navigating ME/CFS. Her soft presence reminds us that we are not alone in our struggles.
As our limited-edition merchandise launch approaches, secure your Betty today.
She's not just a mascot; she's beginning a movement!
More merchandise coming soon!
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Emerge Australia Annual General Meeting
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Reminder to all Emerge Australia Members, following on from the notice you already received, the next Emerge Australia AGM will be held Thursday 27 November at 5:30pm (AEDT). All financial members of the Association are entitled to attend the AGM either via Zoom or by proxy.
Official Notice for Emerge Australia Inc. Annual General Meeting
Our members give Emerge Australia the impetus, encouragement and drive to continue our work. By joining and supporting us, you will be helping to advance our cause to improve the lives of Australians with ME/CFS, long COVID and associated conditions, and their families. If you would like to become a member, please visit our website. |
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The 2025 ME/CFS & Long COVID Media Awards are now open for nominations!
Your nominations are crucial in highlighting journalism that changes how ME/CFS and long COVID are perceived.
Let's celebrate reporting that amplifies patient voices, dismantles stigma, and deepens public understanding. 🗓️ Eligibility: Work published or broadcast between 1 Jan – 31 Dec 2025 💡Nominate articles, radio, TV, digital, or podcasts 🌍 Open to Australian and international entries
Help us honour courageous, truthful, and compassionate storytelling. |
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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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