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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!
Well I thought February was a busy month – but that pales into insignificance when we consider how hectic March has been to date.
In this newsletter you will hear all about our highly successful ME/CFS Parliamentary Friends Group meeting held on 10 March on behalf of the ME/CFS Alliance Australia. Thanks to all alliance members, and various members of the community for inspiring your local MPs to come along. To the hard working Emerge Australia team and volunteers, we had the highest turnout of MPs to date and all... |
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Parliamentary Friends of ME/CFS meeting - 10 March, 2026 |
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On Tuesday 10th March, ME/CFS Alliance Australia and Co-Chair Dr Mike Freelander MP, hosted the Parliamentary Friends of ME/CFS meeting at Australian Parliament House.
The meeting, themed Fluctuating Energy. Fixed Systems, highlighted a central policy failure: people living with ME/CFS and long COVID often experience fluctuating and unpredictable capacity, but the systems they rely on are still designed around fixed assumptions of functioning, attendance and recovery.
This meeting achieved our highest-ever parliamentarian engagement, with 34 parliamentarians or their staff in attendance and 14 sending apologies, driven by more than 300 letters sent by our community. Full list of attendees.
The message from the meeting was clear: people living with ME/CFS and other energy limiting conditions have waited too long for systems that understand fluctuation, reduce harm and respond effectively. Australia now needs leadership, coordination and investment that match the scale of the issue. |
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International Long COVID Awareness Week 2026 |
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Emerge Australia recognised International Long COVID Awareness Week from 9 March-15 March. During the week we held a series of initiatives around the theme Breaking Barriers, Building Support, with the aim of raising awareness and support for the long COVID and ME/CFS communities. The initiatives included; - New episodes of the Imagine Podcast
- Announcement of the finalists and winner of the Long COVID Excellence in Media Awards
- Co-hosting of the Parliamentary Friends of ME/CFS Group meeting
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Pedal for Power - inclusive fundraising |
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Emerge Australia has launched our new fundraiser Pedal for Power - inclusive fundraising built around safety and pacing. No exercise required.
From Long COVID Awareness Day through to ME/CFS Awareness Day, we invite you to participate in whatever way you choose and raise much needed funds to support and sustain Emerge Australia services.
Sign up. Choose your pedal. Set your goal (minutes). Share your link and fund real care for those living with ME/CFS and long COVID. If you live with PEM: Rest is your pedal. It recharges you |
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Join Our 2026 Live Pacing Pop-Up Series |
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We’re excited to announce a four-part Live Pacing Pop-Up series running monthly from March to June 2026.
These interactive sessions are designed to provide practical guidance, real-world strategies, and space for questions - helping you build confidence in managing energy and reducing symptom flare-ups.
Participants can attend the full series to progressively develop their pacing approach or register for individual sessions of interest.
There is no requirement to complete the associated learning module beforehand, though participants are welcome to review it and bring questions.
Session Topics: - Step 1: Post-Exertional Malaise
- Step 2: Pacing Unpacked (Basics)
- Step 3: Pacing and Heart Rate
- Step 4: Pacing Upright Hours
Places are limited and registrations are essential. |
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The winner of the 2026 Emerge Australia Long COVID Award for Journalism Excellence is Felicity Nelson for her collection of articles about long COVID throughout 2025.
The judges valued Felicity’s evidence-based approach and her willingness to share her lived experience. The panel noted her diligence, relentlessness and tenacity and acknowledged her strong angles and forward-looking approach over the years.
The award was presented at Australian Parliament House, Canberra, by The Hon Rebecca White MP. |
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National Law Review: Emerge Australia Calls For Government Action During Long COVID Awareness Week |
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Over 600,000 Australians living with ME/CFS and long COVID face gaps in education, research funding, and treatment access during Long COVID Awareness Week.
Emerge Australia is marking Long COVID Awareness Week (March 9-15, 2026) with a series of national initiatives aimed at raising awareness and driving policy change for the over 600,000 Australians living with ME/CFS, long COVID, and associated energy-limiting conditions. ME/CFS alone costs the Australian economy an estimated $14.5 billion annually. Almost 50% of long COVID patients are known to transition to ME/CFS, with an additional 250,000 Australians already living with the condition.
“Key areas of focus are clinical education, ME/CFS research advancement, enhanced patient and carer support, and improved access to vital services like the NDIS and income support programs.”
– Anne Wilson, CEO, Emerge Australia... |
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The Medical Republic: Chronic Fatigue Over Chronic Fatigue Reform |
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In the article, Euan Kielly reports on a parliamentary hearing where advocates, clinicians, researchers and people with lived experience called for stronger action on ME/CFS and long COVID in Australia.
The piece highlights slow progress on the 2024 inquiry recommendations, including calls for specialist centres in each state, while speakers warned that long COVID is an escalating health crisis with major social, economic and human impacts. Kielly also draws attention to patient Henry Barker’s experience of loneliness and misunderstanding, alongside concerns from Dr Emma Tippett and attending MPs about limited services, inadequate Medicare support and the urgent need for reform... |
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MissingSchool Podcast: Live & Learn episode 39 |
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On Episode 39, Megan from the Live & Learn Podcast speaks with Emerge Australia CEO Anne Wilson, about how ME/CFS and long COVID can affect a child’s ability to stay connected to school and learning.
Anne highlights the challenges of delayed diagnosis, limited understanding, and the need for flexible, coordinated support so students are not left behind. |
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NAA National Neurological Survey 2026 |
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As a member of Neurological Alliance Australia, Emerge Australia is supporting its first national survey examining gaps in neurological care, support, research and identifying innovation across Australia.
The survey seeks insights from people living with neurological and neuromuscular conditions, such as ME/CFS and long COVID, carers, clinicians, researchers, service providers, pharma industry and policymakers.
Findings will help identify priority areas for improvement and inform national advocacy and policy and will be conducted every two years to monitor improvements in services, supports and outcomes.
We encourage our community and networks to participate and share their perspectives. The survey closes on Friday 08 May 2026. |
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New Emerge Australia online module for Healthcare Practitioners!
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ME/CFS in General Practice: From invisible to visible - 90% of patients with ME/CFS remain undiagnosed
- 50% of long COVID patients meet ME/CFS diagnostic criteria
- GPs play a vital role in improving diagnostic rates for this vulnerable population
In this case-based learning module, get practical guidance around: - Identifying a potential case of ME/CFS
- Working through the diagnostic process and things to look out for, including alternative diagnosis
- Communicating effectively with patients who have experienced stigma and dismissal
- Initiating appropriate management once a diagnosis has been made
This activity is approved for 1 hour of EA & 1 hour of RP in the 2026-2028 RACGP Triennium * Important: This module is for Registered Healthcare Professionals only |
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Research Digest 125th Edition |
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This month’s collection reflects the continued strengthening of the evidence base across ME/CFS and related conditions, spanning biological mechanisms, lived experience, and illness trajectories. Together, the featured work reinforces the complex, multisystem nature of ME/CFS, the significant impacts on those most severely affected, and the growing momentum toward clearer biological understanding and improved recognition.
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Monash University is seeking volunteers for a study for people who have a diagnosis of long COVID.
Participants must be: - Over 18 years old
- Living in Metropolitan Melbourne
- Not pregnant or breastfeeding
- Not following a special diet
- Not taking anti-inflammatory medication, antibiotics or probiotics
For more information contact Dr Jane Varney at Monash University directly jane.varney@monash.edu |
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Researchers at Deakin University are testing a potential new treatment for ME/CFS and are looking for participants to join their clinical trial! You may be eligible if you: - Are over 18 years
- Have a diagnosis of ME/CFS
What the trial involves:
- 8 weeks of participation (1 in-person session @ Barwon Health
Geelong or @ Swinburne University Hawthorn/Melbourne and
5 in-person or remote sessions via video calling)
- Receiving either the study medicine or a placebo
- Blood tests for safety monitoring
This study has been approved by the Barwon Health HREC (23/196)
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The Thompson Institute/University of the Sunshine Coast (QLD) is recruiting participants for their important study! With the invaluable support of our research participants, we're developing imaging criteria for diagnosis of ME/CFS, fibromyalgia, and long COVID.
You may be suitable if you meet the following criteria: - Aged 18-65 years
- Healthy
OR
- Living with #MECFS, fibromyalgia, or other fatiguing illnesses
- Able to travel to the Thompson Institute, Sunshine Coast
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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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