Sick and Tired: Casting a long shadow long COVID Inquiry 2023
Recommendation 8 of the long COVID Inquiry highlighted the need for greater funding of research and patient support for people living with the disabling effects of ME/CFS.
To address implementation of Recommendation 8, please join us to hear presentations from;
Tracey Spicer AM, Emerge Australia Ambassador
Tracey is a multiple Walkley Award winning author, journalist and broadcaster who has anchored national programs for ABC TV and radio, Network Ten and Sky News. The inaugural national convenor of Women in Media, Tracey is one of the most sought-after on stage and online keynote speakers and emcees in Australia. Her accolades include being named 2019 NSW Premier’s Woman of the Year, accepting the Sydney Peace Prize alongside Tarana Burke for the Me-Too movement, accepting the national award for Excellence in Women’s Leadership through Women & Leadership Australia among many other awards and achievements. Chosen as one of the Australian Financial Review’s 100 Women of Influence, Tracey in the Social Enterprise and Not-For-Profit category. For her 30 years of media and charity work, Tracey has been awarded the Order of Australia. There are so many highlights of her outstanding career include writing, producing and presenting documentaries on women and girls in Bangladesh, Kenya, Uganda, Papua New Guinea and India. Being Ambassador for ActionAid, the Ethnic Business Awards, Purple Our World, and Emerge Australia and Patron of the Pancreatic Cancer Alliance. Her first book, The Good Girl Stripped Bare, became a bestseller within weeks of publication, while her TEDx Talk attracted more than six million views worldwide. The ABC highlighted Tracey’s #me-to work in the three-part documentary series Silent No More, which featured the stories of hidden survivors. Tracey has written a further book Man Made about how the bias of the past is being built into the machines that will run our futures
Dr Mike Freelander MP, Member for Macarthur
Mike has been the Member for Macarthur since 2016. Before this, he worked as a paediatrician in Campbelltown & Camden for nearly 40 years, and in both roles, he has dedicated himself to making sure his local community is supported, cared for and receives the best outcomes possible. Mike has a long connection to Macarthur as he opened his very first clinics in Campbelltown and Camden in 1984, which occurred the same day that Medicare was established. Since then, he and his wife Sharon have raised their six children in Macarthur and have seen the region grow. Mike also commenced work at Campbelltown Hospital where he took on the role as Head of Paediatrics from 1986 to 2013. His hard work and dedication to the region earnt him the respect of local families and residents. In his near 4 decades as a paediatrician in the Macarthur region, Mike has seen over 200,000 patients. Having increasingly seen his patients and their families struggle with affordability and access to healthcare, housing, and education, as well as poor local infrastructure, Mike decided to run for the Federal seat of Macarthur in 2016, which he won, and was re-elected in 2019 and 2022. As the Member for Macarthur, Mike has long advocated for better healthcare, economic, environmental and infrastructure outcomes for his electorate, which is important given that Macarthur is the largest electorate by number on enrolled individuals in the nation. Since then, and with the successful election of the Albanese Government in 2022, Mike has been able to deliver local services, such as the Medicare Urgent Care Clinics and the Medicare bulk billing incentive increase that benefits both patients and GPs alike. Mike currently serves as the Chair of the Standing Committee on Health, Aged Care and Sport and has led the Committee’s inquiry into long COVID as well as its current Inquiry into Diabetes management, treatment, and prevention. Despite his workload as a Member of Parliament, Mike still finds time to see patients at Campbelltown Hospital and to give back to his profession by teaching the next generation of doctors as an Associate Professor at Western Sydney University, Campbelltown Campus.
Senator Jordon Steele-John, Senator for WA and Green Portfolio holder for Health and Disability
Jordon Steele-John is a Greens Senator for WA and a proud disabled person. He advocates for disability rights and equitable healthcare for all Australians. Jordon and his team were instrumental in establishing a Parliamentary Inquiry into access to ADHD assessment and support services – the first of its kind in Australia. Jordon’s goal is to challenge the boundaries of political norms – both in the Senate and the community and create a more accessible and inclusive society for all. He is co-chair of The Parliamentary Friends of ME/CFS.
Senator the Hon Anne Ruston, Shadow Minister for Health and Aged Care, Shadow Minister for Sport and a Liberal Senator for South Australia
Senator the Hon Anne Ruston has been a Senator since September 2012. In July 2014, Anne was elected Senior Deputy Government Whip in the Senate and Chair of the Senate Environment and Communications Legislation Committee. She was also an active participant in the Rural and Regional Affairs and Transport Committee. Senator Ruston was appointed Assistant Minister of Agriculture and Water Resources in September 2015. She was subsequently appointed as Assistant Minister for International Development and the Pacific in August 2018. Prior to the 2022 election, Senator Ruston was a Cabinet Minister, holding the positions of Minister for Families and Social Services, Minister for Women’s Safety and Manager of Government Business in the Senate for three years. Prior to becoming a Senator, Anne held several senior positions in government and the private sector, including as the inaugural chief executive of the National Wine Centre. She was also a primary producer and irrigator, owning and operating the largest commercial rose garden in Australia. Born and raised in Renmark, on the River Murray in South Australia, Anne continues to have a strong connection with the Riverland community. She is passionate about regional South Australia and is the only SA Senator who maintains a regional electorate office.
Simone Eyssens, patient living with the burden of ME/CFS
A former psychologist, Simone has lived with ME/CFS for almost 30 years, and been mostly bedbound for almost 10 years. She has been involved with ME/CFS advocacy since 2015, and was one of two patient representatives on the NHMRC ME/CFS Advisory Committee informing the 2019 Report referenced in Recommendation 8. Simone works 5 hours a week for Emerge Australia as our Research Director.
Tori Sommer, A.(Psych), B.App.Sc.(Chiro) carer for husband living with ME/CFS – Dr Steven Sommer
Tori completed her B.App.Sc. (Chiropractic) degree at RMIT after an initial B.A. (Fine Art/Psych) degree at Melbourne University. She ran her own Chiropractic clinic for 20 years during the period of time she met, married and subsequently cared for Steven through his illness with ME/CFS. Steven lost his career as a GP and medical educator at Monash University’s Department of Community Medicine due to the illness. She found solace and good friendships throughout these difficult and isolating years through developing her interests and skills in artistic pursuits. Tori closed her clinic in 2012 when Steven succumbed to additional diagnoses with life threatening hospitalisations with Crohn’s Disease, new disabilities with Parkinson’s Disease in addition to Graves’ Disease along with the complications of long term ME/CFS. The validation of Tori’s role as Steven’s carer that came with his new diagnoses brought into stark contrast the total absence of support from family, friends, medical practitioners, insurance companies, lawyers and society in general during his time with ME/CFS.
Dr Christopher Armstrong, PhD, Director, Melbourne ME/CFS Collaboration (Open Medicine Foundation)
Dr. Christopher Armstrong completed his PhD at the University of Melbourne where he was first to apply metabolomics to multiple biofluid types in order to assess energy production capacity in ME/CFS patients. This work culminated in the hypothesis that reduced energy production capacity is a feature of ME/CFS and can be linked directly to fatigue and gut symptoms. After completing his PhD, Dr. Armstrong was recruited to join Open Medicine Foundation as a Science Liaison while continuing his research at Stanford University as a Visiting Scholar. While in the US he further refined the energy production hypothesis around ME/CFS patients using less efficient fuels (amino acids) for ATP production and the potential harmful byproducts of this. This hypothesis has sprouted multiple projects and new ideas regarding the biology that might commonly underly ME/CFS. During the COVID-19 pandemic, Open Medicine Foundation Australia was setup in order to establish the Melbourne ME/CFS Collaboration with support from Emerge Australia. Dr. Armstrong was instilled as Director of this collaborative research hub in Australia and moved back to the University of Melbourne after several successful grant applications. Since 2021, Dr. Armstrong has built a research group focused on understanding the disease dynamics and pathologies that exist in ME/CFS and long COVID. He follows a philosophy that chronic complex post-infection diseases are heterogenous and understanding the biology/pathologies within the individual is necessary to begin targeting successful treatments. He is a member of the OMF Scientific Advisory Board and the Emerge Australia Medical & Scientific Advisory Committee.
Dr Leanne Laajoki, Director, Department of Health and Aged Care
Dr Leanne Laajoki leads the Chronic Condition Strategic Policy team at the Department of Health and Aged Care. The section is overseeing the review and refresh of the National Strategic Framework for Chronic Conditions, the overarching policy for the prevention and management of chronic conditions in Australia. Leanne has worked at the Department of Health and Aged Care since 2019, initially leading the Healthy Living and Food Governance team, which included supporting implementation of the Health Star Rating (HSR) system. Preceding this, Leanne worked in various roles in food regulation including leading the science strategy, international and surveillance work at Food Standards Australia New Zealand (FSANZ). Leanne holds a Bachelor of Science (honours), Chemistry and Nutrition from the University of Wollongong and a PhD in Chemistry from the Australian National University.
Dr Mark Donohoe, GP President ACNEM, Founder, Director, Mosman Integrative Medicine
Close to 40 years in practice, specialising in chronic fatigue syndrome, environmental and occupational toxicology, and sensory sensitivities including multiple chemical sensitivity. Practices with his wife, Fiona, at Mosman Integrative Medicine in Sydney, focusing on causes of illnesses and diseases with an underlying philosophy that health in all its forms is the best prevention of disease, and that most disease is best managed by clean air, clean food, clean water and a commitment to a diet and lifestyle that is health enhancing.
Professor Paul Fisher, Chair Emerge Australia Medical and Scientific Advisory Committee
Former Head of Microbiology, Department of Physiology, Anatomy, and Microbiology, La Trobe University, with research interests including the study of neurodegenerative disease, mitochondrial biology, Parkinson’s disease and the roles of mitochondria in disease. Particular dedication and focus is in studying blood plasma, white blood cells and mitochrondria from ME/CFS patients. Chair of Emerge Australia’s Medical and Scientific Advisory Committee, where his leadership helps shape research priorities. His ground-breaking work is widely published, recognising ME/CFS as a complex and debilitating disease with a substantial social and economic impact on individuals and their communities.
Dr Gabriela Khoury, Burnett Institute
Dr Gabriela Khoury is the Antiviral Immunity Theme Leader at the Burnet Institute. She is an emerging research leader in clinical and translational immunology with expertise in immunodeficiency and chronic viral infections. Dr Khoury is passionate about understanding the long-term impact of viral infections on people’s health and previously worked in the field of HIV persistence for many years. Now her laboratory studies the immunological and molecular mechanisms behind post-viral fatigue syndromes like ME/CFS, POTS and long COVID, with the goal to develop novel diagnostic tests and therapies. Her team also works on understanding immune responses to COVID-19 infection and vaccination in different immunocompromised cohorts. This work is funded through a $6.3M MRFF grant awarded in 2022 which is a large partnership between Burnet, Monash University, Monash Health, Alfred Health and the Murdoch Children’s Research Institute.
Professor David Putrino, Director of Rehabilitation Innovation Icahn School of Medicine Mount Sinai
David trained as a physiotherapist before completing a PhD in Neuroscience. He is currently a Professor in the Department of Rehabilitation and Human Performance at the Icahn School of Medicine at Mount Sinai in New York City and is the Nash Family Director of the Cohen Center for Recovery from Complex Chronic Illness. Since the beginning of the COVID-19 pandemic in 2020, David has been recognized globally as a leading expert in the assessment, treatment and underlying pathophysiology of long COVID. His team has managed the care of over 3000 people with long COVID and published multiple peer-reviewed scientific papers on the topic. In 2019, he was named “Global Australian of the Year” for his contributions to healthcare.
Professor Peter R Schofield AO FAHMS PhD DSc
Professor Peter Schofield is a neuroscientist who has held multiple senior leadership roles in health and medical research, including as CEO of Neuroscience Research Australia, one of Australia’s leading centres of neuroscience research (2004-2022), President of the Australasian Neuroscience Society (2020-2022) and as Interim Director of the NHMRC National Institute for Dementia Research (2016-2017). His roles in sector advocacy and leadership have included being a Founding Director of many for-purpose or start-up companies including Research Australia and the Australian Dementia Network Ltd, and as a director of the Association of Australia Medical Research Institutes (AAMRI). Peter has served as Chair of the Mason Foundation National Medical Advisory Panel since 2015. His research interests focus on neurogenetic contributions to brain function, to psychiatric and neurodegenerative disorders. He has published over 480 papers, is a Fellow of the Australian Academy of Health and Medical Sciences and a conjoint Professor of Medicine at UNSW Sydney. In the 2019 Australia Day Awards he was appointed an Officer of the Order of Australia for distinguished service to medical and scientific research in the field of neuroscience, and to professional institutions.
