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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!
As I write, Australia is gearing up for a federal election on 3 May. In our previous newsletter we outlined to you our election strategy designed in collaboration with our colleagues in Bridges & Pathways; ME/CFS Australia; MEANA and MEGA. Our four election priorities have been widely communicated, and we are grateful to everyone who has been reinforcing our messaging to MPs through your local members. Government needs to invest in ME/CFS and long COVID. See first article in this newsletter for more information.
To that end I have spent time lately in Canberra and other states meeting with MPs, Advisors and Department of Health officials, discussing our case for support on your behalf. I urge you to... |
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Federal election campaign: We demand a #FairGoForME! |
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And we need your help! This federal election, we are seeking to gain election commitments that will improve the lives of people living with ME/CFS and long COVID from major parties and independents. We are asking our community to help gain these commitments.
Our social media campaign, running until the federal election on May 3, will feature posts twice per week.
What you can do: Follow the instructions in the post, which will ask you to tag, share and/or comment on each post with your candidates. Make your voice heard and tag #FairGoForME 
Once we gain these commitments, we will populate this scorecard. Then we need your help to promote election commitments to demonstrate how many people are affected by ME/CFS and long COVID, and how many votes can be won!
What you can do: Promote the election commitments far and wide via social media! Remember to tag #FairGoForME |
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ME/CFS Awareness Week 2025 - Save the date! |
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This year ME/CFS Awareness Week will run from Tuesday 6 May and culminating on ME/CFS Awareness Day - Monday 12 May.
ME/CFS Awareness Week will showcase a new podcast season, ME/CFS Excellence in Journalism Awards and an online Symposium on Wednesday 7 May at 2pm AEST.
More details to follow in the next newsletter or follow Emerge Australia on social media for the latest updates. |
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Long COVID Awareness Week Wrap-Up |
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During the week Emerge Australia invited the community to participate in a series of initiatives around the theme Shining a Light on long COVID – navigating the unknown – ME/CFS. With the aim of raising awareness and support for the long COVID and ME/CFS communities.
Imagine PodcastSix episodes of our Imagine podcast were released during the week, encompassing compelling discussions with experts, patients, and advocates exploring the multifaceted impacts of long COVID and ME/CFS. Guests included: - Dr Tess Ryan – Lecturer and project coordinator ACU
- Dr Richard Schloeffel OAM – Former Medical Director Emerge Australia
- Sarah Vizer – Author, speaker, coach
- Barry – Living with long COVID and caring for his partner with ME/CFS
- Plum Stone – Founder the Safer Air Project and living with Long COVID
- Shiloh Moore – Advocate, writer, author, spiritual explorer
SymposiumOn Wednesday, 12 March, CEO Anne Wilson was joined by experts and those with lived experience to talk about long COVID and share insights, information and respond to questions from the community. With over 200 attendees, this was our largest symposium to date. |
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Sunday 18 May is Blue Tea for ME! |
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Create your own tea party as a special fundraising event for Emerge Australia – online or in person.
Enjoy a soothing cup of tea and favourites treats while making a difference to the lives of so many Australians.
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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Inaugural National Disability Care Wollongong NDIS Expo 2025 |
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Congratulations to members from Illawarra ME/CFS, FM & long COVID Support group who in February hosted a stand at the inaugural National Disability Care Wollongong NDIS Expo. Sponsored by their local Kiama Lions Club, who assisted in paying for the table and printing, they engaged with service providers and discussed supports for ME/CFS and long COVID. People were very keen to chat with the 3 carers and 5 members with multiple conditions who assisted throughout the day. |
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Support Groups for Carers |
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We’re welcoming all carers to enrol in two new Virtual Support Groups coming in April 2025, designed specifically for carers! A dedicated space for partners supporting loved ones, offering connection and understanding. - Carers of Adults
- Carers of School-Aged People
These tailored groups provide support, and community for those caring for both adults and school-aged people. These groups are a safe, supportive environment where carers can share experiences, ask questions, and find connection.
Register to join us as we launch these empowering groups!
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ABC News: When illness forced Sarah out of work, she thought she'd be off for six months. It turned into eight years |
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Journalist Hayley Gleeson shares the story of Sarah Williams, after chronic illness forced Sarah to leave her university job, a planned six-month break turned into eight years. Battling ME/CFS, she returned to her childhood home in Tasmania’s Meander Valley — where she eventually transformed her grandfather’s guesthouse into Cedar Cottage Meander, a thriving eco-stay business.
Her story reflects a growing reality: some career changes aren’t chosen, but necessary. “Productivity doesn’t equate to self-worth,” says Sarah, now financially independent and embracing a slower, more meaningful life.
The article makes reference to the results of Emerge Australia’s 2019 Health and Wellbeing Survey, which can be found here. |
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SBS: The world has largely moved on from COVID-19. Meet the people who can't |
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Saturday, 15 March marks International Long COVID Awareness Day.
Five years after COVID-19 was declared a global pandemic, many Australians are still battling its long-term effects.
Journalist Jessica Bahr speaks with long COVID sufferers and experts about the challenges they face as the world moves on.
Emerge Australia’s CEO Anne Wilson is quoted in the article discussing how long COVID patients are being forgotten.
“It was a pandemic and it was five years ago and that’s been and gone … but it hasn’t, for the people who are still suffering,” ...“[People’s] lives have been completely disrupted because they can’t work, they have no income, their family life has been affected, their ability to function in every possible way has been impacted.”
“These are invisible disabilities and the people are invisible—to society, their doctors, and the government.” |
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NHMRC Scoping survey for Clinical Practice Guidelines for ME/CFS |
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There is still time to have your say! The National Health and Medical Research Council (NHMRC) is seeking input from the ME/CFS and long COVID communities as part of their development of new clinical guidelines.
Complete the scoping survey to help NHMRC: - understand the needs of the community regarding clinical practice guidelines
- understand potential enablers and barriers to the care of people with ME/CFS
- establish priority areas for evidence review that reflect the needs of the ME/CFS community
- identify appropriate formats for the guidelines
- identify further areas for research where the evidence base is lacking.
Your views will help develop guidelines that are useful and address the priorities of the community. Submissions close 27 April 2025. |
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ACT Clinicians - In-person Clinical Education |
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Emerge Australia has partnered with Capital Health Network to host a 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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Exciting News from AusME Registry! |
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Based on your feedback, we're thrilled to offer 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 115th Edition |
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The 115th edition of Emerge Australia’s Research Digest. This edition explores post-acute sequelae of COVID-19 (PASC) mechanisms, with magnetic resonance imaging (MRI) and cognitive studies revealing lasting brain alterations and impairments. Comparative studies of ME/CFS with PASC highlight both shared and distinct dysfunctions. Beyond research, the lived experiences of Australians with long COVID emphasise the urgent need for recognition, research, and support.
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April 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; - The ME/CFS research program at Columbia University in the US has been shut down following the US government’s cuts to the university’s funding.
- Solve ME/CFS Initiative and Bateman Horne Center co-hosted a series of four webinars on severe ME/CFS, the topics were (1) caregiving, (2) legal planning, (3) medical care and (4) research.
- The Cochrane Group announced in December that, more than five years after they promised to update the Exercise for Chronic Fatigue Syndrome review, they would no longer update the review. The announcement has been met with strong condemnation from around the world.
- #MEAction and the Patient-Led Research Collaborative published a letter calling on US Secretary of Health, Robert F Kennedy Jr, to reinstate the Long COVID Advisory Committee, which was recently disbanded.
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Upcoming NDIS and DSP Online Education Sessions |
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Navigating financial and disability supports can be challenging, especially if you live with an energy-limiting illness. That’s why we’re updating our resources to help you navigate the application process for the Disability Support Pension (DSP) and the National Disability Insurance Scheme (NDIS).
In May and June, we're hosting live online sessions to guide you through the process and share tips for submitting a strong application.
This is a great opportunity to gain valuable insights and feel more confident about your application. |
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Join a Live Education Session! |
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Join free live education sessions with Emerge Australia's nurse Camille. These sessions would benefit people who live with ME/CFS, long COVID and their supporters and cover topics including;- Pacing and orthostatic intolerance - 8 April
- Pacing and the heart rate - 6 May
- Sleep - 27 May
This is your chance to ask questions and get 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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