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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!
It’s hard to believe we’re already in mid-October — Christmas is just around the corner, and our team is in full flight. I can’t recall a busier time!
With just 8.4 full-time equivalent staff, our small but mighty team has been working across every corner of the organisation — from drafting funding submissions and responding to government consultations, to educating GPs, managing social media, building a new business development platform, creating patient-inspired merchandise, and planning our From Stigma to Science: Educating for Change Action Forum on 30 October. Add to that...
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From Stigma to Science: Educating for Change |
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Join us for our ME/CFS & Long COVID Action Forum from Australian Parliament House.
This event calls for action, investment and policy reform to improve the lives of people living with ME/CFS, long COVID and related energy-limiting conditions.
Speakers include: - Lily Schubert
- Dr. Mike Freelander MP
- Professor Michael Kidd AO
- Tracey Collins
- Professor Chris Ponting
- Associate Professor Bernard Shiu
More speakers to be announced soon
When: 1pm – 3pm AEDT, Thursday, 30 October 2025 Where: Online |
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Attendance at Brisbane HealthEd Medical Update |
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On Saturday 11 October, Emerge Australia was at HealthEd in Brisbane to inform Clinical Health Professionals about ME/CFS and long COVID.
Emerge Australia's CEO Anne Wilson joined Associate Professor Bernard Shiu at HealthEd Brisbane where he presented twice on long COVID for GPs, including diagnosing ME/CFS when it is part of someone's long COVID presentation.
All up, there were 1100 attendees at the presentations.
We connected with 40 healthcare practitioners at our stand, many of whom agreed to join our GP Practitioner Aware Directory.
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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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National Carers Week
Are you one, know one or will be one?
This week is National Carers Week, we acknowledge and celebrate all those caring for someone with ME/CFS and/or long COVID.
To support and empower Carers we have a wealth of information available on our website. |
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Virtual Carers Support Groups |
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There are still places available in our Carers support groups which started in October.
Support groups for carers and supporters of people with ME/CFS and long COVID, offer safe, understanding spaces to share experiences, gain emotional support and access practical strategies. Our aim is to reduce isolation, build resilience, and empower caregivers through community, connection and shared strength in navigating these challenging conditions. How Our Groups Work - Group Size: Up to 12 participants
- Facilitators: Each group is hosted by a trained Emerge Australia facilitator
- Session Format: 5 virtual sessions, held every two weeks
- Ongoing Support: After the initial sessions, your group can continue meeting as part of our Volunteer Peer Support Community to stay connected
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October is Mental Health Month
When living with or caring for someone with ME/CFS or long COVID much of the focus is on the physical aspects of these conditions. But looking after your emotional wellbeing is just as important.
Emerge Australia has developed information and resources around; - Adjusting to living with a chronic illness or caring for a person with chronic illness
- How to access mental health support if you need it, and
- Where to go if you need crisis support.
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Last week, on 10 October, we recognised World Mental Health Day.
With the theme of "Access to Services - Mental Health in Catastrophes and Emergencies", we revisit an article featuring Emerge Australia's Nurse Educator Kate Herbert who lives with ME/CFS.
In this article, discussing the Australia reMADE and Women's Health Goulburn North East report "Care Through Disaster", Kate talks about how severe weather-related emergencies responses need to be inclusive of people living with a chronic illness, such as ME/CFS, are neurodivergent, or have a disability. |
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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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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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Clinical Guidelines Update: Progress Toward New ME/CFS Guidance
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The NHMRC ME/CFS Clinical Guideline Development Committee held its first meeting in August 2025, marking an important step toward developing updated, evidence-based clinical guidelines for ME/CFS in Australia.
Key discussion themes included: - Early intervention
- Consistent and contextually relevant diagnostic criteria
- Core symptoms such as post-exertional malaise
- Holistic, patient-centred models of care
- The severity spectrum of ME/CFS
- The impact of ME/CFS on young people
The project is already having an impact. The Medical Journal of Australia has now added a new disclaimer to the outdated 2002 Australian ME/CFS guidelines, stating: “The notification has been issued to inform readers of concerns that the information contained therein is outdated.” |
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Research Digest 121st Edition |
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In this issue, we explore new research into the neurological and genetic underpinnings of ME/CFS and long COVID, including links to neurodegeneration and neuropsychiatric conditions. We also share findings on the effectiveness of telehealth for homebound individuals, and an Australian study highlighting the profound impact of long COVID on disability, daily functioning, and quality of life. Together, these articles underscore the urgent need for continued research, better care strategies, and recognition of the serious, long-term effects of these 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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October 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; - UK National Institute for Health and Care Research (NIHR) is seeking applications for research to accelerate the treatment and management of long COVID and ME/CFS. The grant of up to £200,000 will fund the development of a Phase 2 platform trial that can test multiple repurposed medications.
- The Netherlands Organisation for Health Research and Development (ZonMw) has funded 7 new ME/CFS research projects in the second round of its funding grants. A requirement for the funding is that the projects involve collaboration and are focussed on biomedical aspects of the condition.
- The World ME Alliance has published a very brief guide: Supporting People with Severe and Very Severe ME/CFS: A Resource Guide for Clinicians. The guide was developed in partnership with the Severe ME Advocacy group and is available in both English and French.
- #MEAction published a gallery of art produced by people living with severe ME/CFS for Severe ME Day. The Severe ME Artists Project included over 100 submissions in a wide range of mediums, including painting, digital art, video, and writing.
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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;- Disability Support Pension Q&A - 21 October, 2pm (AEDT)
- Pain - 28 October, 2pm (AEDT)
- National Disability Insurance Scheme (NDIS) Q&A - 12 November, 2pm (AEDT)
- Pacing and Orthostatic Intolerance - 18 November, 2pm (AEDT)
- Brain Fog - 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. |
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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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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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