On 27 March 2024 in Parliament House Canberra, Emerge Australia supported by Open Medicine Foundation Australia, brought clinical scientific and patient representatives together to discuss the urgent needs of the estimated 250,000 Australians across all ages and regions with ME/CFS. With 75% being women and 25% house or bed bound, they and their families total over a million Australians whose lives are profoundly impacted by ME/CFS. They continue to be unseen, unheard and invisible.
The meeting was conducted in the context of Recommendation 8 of Sick and Tired: Casting a long shadow Long COVID Inquiry 2023 which said: The Committee recommends funding be made available for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) research and patient support and that this funding should be allocated in consultation with peak bodies for ME/CFS and with note of the recommendations of the ME/CFS Advisory Committee’s 2019 report to the National Health and Medical Research Council.
It was noted that every year we fail to address ME/CFS $10-14.5 billion is lost to the Australian economy.
Speaking following the event, CEO Anne Wilson said it is critical that health is seen as an investment and not a cost. Australia’s ME/CFS community have been left out, gaslit, had their needs ignored and negated as a result of a lack of financial investment. Over 260 people impacted by ME/CFS registered to join the meeting via audio with a further 40 attending in person. The White Paper to be developed for 12 April will consist of suggestions that if implemented would have a major impact on the lives of those with ME/CFS and Long COVID.
With over forty participants in the room and more than 200 registrants for the live audio feed, the meeting noted that it is critical to have new clinical guidelines for ME/CFS, to educate clinicians, to expand specialist Telehealth services and to uplift support for biomedical research into diagnosis, management and treatment of ME/CFS. More details can be seen HERE
Speakers included:
- Tracey Spicer AM Ambassador Emerge Australia and patient with Long COVID lived experience
- Anne Wilson, CEO Emerge Australia
- Bill Ranken, Chair Open Medicine Foundation Australia
- Dr Mike Freelander Federal Member for Macarthur
- Senator Jordon Steele-John Co-Chair ME/CFS Parliamentary Friends Committee
- Senator the Hon Anne Ruston, Shadow Minister for Health and Aged Care
- Simone Eyssens, patient living with the burden of ME/CFS
- Tori Sommer, carer for husband living with ME/CFS
- Dr Christopher Armstrong PhD, Director, Melbourne ME/CFS Collaboration (OMF Australia)
- Dr Mark Donohoe, GP President ACNEM, Founder, Director, Mosman Integrative Medicine
- Professor Paul Fisher, Chair Emerge Australia’s Medical and Scientific Advisory Committee
- Dr Gabriela Khoury, Burnett Institute
- Professor Peter Schofield AO, Chair of the Mason Foundation’s National Medical Advisory Panel
- Professor David Putrino, Director of Rehabilitation Innovation at Icahn School of Medicine at Mount Sinai
- Dr Leanne Laajoki, Director, Department of Health and Aged Care
Details on speakers can be seen HERE
You can catch Simone Eyssens’ impactful presentation HERE and Professor David Putrino’s HERE and read the 1-pager from Prof. Paul Fisher HERE. Dr Leanne Laajoki asked the community to fill in the survey HERE and talked about the National Post-Acute Sequelae of COVID-19 Plan.
Next steps will be the creation of a White Paper for presenting to government.
