The hallmark of ME/CFS is post-exertional malaise (Pexels, CC).
Burnet researchers met with patients, policy makers, philanthropists and government representatives at Parliament House in Canberra recently to discuss developments in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and long COVID and the need for more research into this condition.
ME/CFS is a debilitating condition that can be triggered by an infection. It affects different systems of the body, often leaving people housebound or confined to bed. There is an estimated 250,000 Australians living with ME/CFS and around 400,000 with long COVID.
The hallmark of ME/CFS is post-exertional malaise (PEM) where symptoms get worse after physical or mental activity. PEM can be caused by simple day-to-day activities we all take for granted like reading a book or cooking. It can take many days to recover from PEM, which has a significant impact on patients and their families, who often step in to become carers for their loved ones.
There have been substantial developments in the understanding of ME/CFS and the most appropriate ways to assess, diagnose, treat, and manage the condition in recent years but further research is needed to gain a better understanding of the condition.
Hosted by Emerge Australia, in collaboration with Open Medicine Foundation Australia, the round table discussion was an opportunity to discuss the need to improve the outlook for patients.
The roundtable brought the ME/CFS and long COVID sectors together around Recommendation 8 of the Commonwealth Government’s long COVID Inquiry, which recommended that funding be made available for ME/CFS research and patient support, in consultation with peak bodies.
A common theme from the round table discussions in Canberra was the need for updated clinical care guidelines and improved health and medical education on ME/CFS, long COVID and other related illnesses.
CEO of Emerge Australia Anne Wilson said Australia’s clinical guidelines, which were established 22 years ago, needed an urgent update, underpinned by contemporary evidence.
"It is a matter of urgency for Australia to update its clinical guidelines for ME/CFS, to ensure patients have access to the best possible care, based on current understanding of the disease and the latest evidence," she said.
Burnet researcher Dr Gabriela Khoury, who is undertaking research into post-acute infection syndromes like ME/CFS and long COVID said there were no clear treatment pathways for people with these conditions.
"We really need a better understanding of the causes behind these conditions. This will allow for the development of new interventions or re-purposing of existing medications to treat post-acute infection syndromes,” she said.
Dr Khoury said it could take many years for a person to receive a diagnosis for these conditions, which was a cause of distress for many patients.
"We are currently looking for biomarkers in these conditions, with the hope of eventually developing a diagnostic test for ME/CFS and long COVID,” she said.
"Having a test will help speed up the diagnosis process and allow clinicians to intervene earlier with appropriate evidence-based treatments.”
"Access to diagnostic tools and evidence-based interventions will help general practitioners and other medical professionals better support patients suffering from post-acute infection syndromes. But to get to this stage, we need greater investment in research.”
The roundtable discussion will form the basis of a White Paper to be presented to the Commonwealth Government.