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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!
What a month it has been culminating on 3 May with the Federal Election and a historic win for the Australian Labor Party. We congratulate the Albanese government on being re-elected for another term and look forward to working with the Health Minister and his team as well as our colleagues in the Department of Health to improve health outcomes for our community. Thanks also to all members of the community who took the time and used your precious energy to do social media posts under the #FairGoForMe campaign and make representation to your local members of parliament regarding the sector’s agreed priorities. Emerge Australia’s work continues to advocate for delivery... |
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ME/CFS Awareness Week 2025 |
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Today marks the beginning of ME/CFS Awareness Week at Emerge Australia, focusing on the theme "Pace". Join us live tomorrow at 2pm (AEST) to hear from our panel, including Emerge Australia Ambassadors and special guests: - Bloom
- Eliza Charley
- Sarah Vizer
- Sophie Scott OAM
- Tracey Spicer AM
Other activities during the week include a new Imagine Podcast season, videos from those in the ME/CFS space, including patients, careers and advocates, and the announcement of the finalists and winner of the ME/CFS Excellence in Journalism Awards. For full details follow Emerge Australia on social media for daily updates. |
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International Collaboration in ME/CFS & Long COVID Education |
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We are thrilled to share that Emerge Australia and Bateman Horne Center are partnering to strengthen global efforts to support patients with ME/CFS, long COVID, and other energy limiting conditions.
We have developing co-branded, self-paced learning modules grounded in the lived experience of patients and designed to help individuals: - Understand their PEM experience and triggers
- Recognise symptoms of orthostatic intolerance (OI)
- Create a patient-cantered pacing plan for everyday life
These modules are developed by healthcare professionals in collaboration with people who have lived experience — but can also help health and support professionals identify opportunities to support accommodation and everyday living. |
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Support Emerge Australia with Blue Tea for ME next Sunday! |
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Enjoy a soothing cup of tea or coffee and favourites treats while making a difference to the lives of those living with ME/CFS.
Started by Anna Redshaw in 2013 a virtual tea party saw people around the world posting photos of their own Tea Party, connecting online, and donating the price they would pay for tea and cake.
Blue Sunday remains a great, accessible way for friends and family to join in and show their support of their own person/people with ME/CFS.
With no right or wrong way to join in on Blue Sunday, we hope you'll find a way that works for you. |
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HBF Run for a Reason 2025 |
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Community member and long time supporter of Emerge Australia Josefin Lundborg, is hoping to raise $500 this year to help Emerge Australia by running in Perth on Sunday 25 May. Please help her by making a donation through her page.
It only takes a minute and any money you can give (no matter how large or small) will go a long way to helping her reach her target. |
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"Meet the Candidates" Gilmore Electorate |
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Hosted by Tracey Collins, with support from Illawarra ME/CFS, FM & long COVID Support group and Emerge Australia, the panel discussion included three candidates from the Gilmore electorate and Amy Davey, carer to her 15 year old daughter who lives with severe ME/CFS.
The event gave those with lived experience a platform to explain how disabling ME/CFS is and how difficult it is to receive safe, appropriate care in Australia. During the panel, the candidates were asked to commit to our four election priorities.
Attended by over 60 people online, the panel was a valuable chance for these candidates to hear the real struggles and needs of the ME/CFS and long COVID community.
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We need your feedback please |
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Today we ask you to provide a rating in response to a brief question to help Emerge Australia understand how you perceive the work we do on your behalf.
The survey should only take a few minutes to complete.
Thank you for helping us to continuously improve. |
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ACT Clinicians - In-person Clinical Education - 12 May |
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There is still time to register for the Emerge Australia and Capital Health Network face-face-event for GP’s and practice staff.
The evening seminar, proudly supported by the John James Foundation, will provide an update on identifying and safely managing ME/CFS, and provide ample time for questions with endocrinologist and ME/CFS expert, Dr Kevin Lee.
When: Monday 12 May from 6pm-8:30pm (AEST) Where: Ramada Encore Belconnen Hotel, ACT
Learning outcomes - Apply ME/CFS diagnostic criteria and address misdiagnoses
- Identify treatment and management options including multidisciplinary approaches and specialist referrals
- Discuss commonly used medications in ME/CFS, including benefits and side-effect profile
RACGP participants will earn 1.5 hours of EA CPD with an optional self-reported 0.5hours of RP |
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Clinical Education Sessions at GPCE Sydney |
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Emerge Australia will be hosting a clinical education session by Dr Bernard Shiu on Friday 16 May 11:30-12:30. This session is accessible to attendees at the GPCE conference only.
This case-based session provides an update on how to recognise, investigate and diagnose a patient with ME/CFS and implement symptom management plans, including discussion and shared decision making around risks and benefits of COVID-19 boosters for post-infection syndromes. - Explore presenting signs and symptoms, including ordering appropriate tests
- Apply diagnostic criteria to correctly identify a case of ME/CFS or long COVID
- Identify benefits and potential risk for COVID-19 booster
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Two pathways to contribute to research |
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Based on your feedback, Emerge Australia now offers more flexibility for our participants!
Whether you're living with ME/CFS or are a healthy volunteer, you now have two options; 1. Complete a study visit once a year, OR 2. Become part of our longitudinal study by completing visits quarterly.
No matter which option you choose, you'll stay updated on upcoming Australian research studies and have the opportunity to contribute as an AusME Biobank donor!
Thank you for helping us shape this exciting next step in ME/CFS research. |
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Research Digest 116th Edition |
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Welcome to the 116th edition of the Research Digest! In this issue, we explore emerging blood-based biomarkers for ME/CFS and share findings from a study highlighting the high burden of chronic overlapping pain conditions and their impact on health and quality of life. From the long COVID field, new research links persistent spike protein in the brain to lasting neurological symptoms. We also share Sarah’s story – a personal account of how ME/CFS reshaped her life and career, and how support helped her find a new path forward.
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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;- Sleep - 27 May, 1pm AEST
- Pacing and orthostatic intolerance - 3 June, 1pm AEST
- How to Apply for the Disability Support Pension - 25 June, 2pm AEST
- Post-exertional malaise - 8 July, 2pm AEST
- How to Apply for the National Disability Insurance Scheme (NDIS) - 16 July, 2pm (AEST)
- Pacing and the heart rate - 22 July, 2pm (AEST)
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 (AEDT), 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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