A parliament hearing has heard from ME/CFS advocates on where and how healthcare needs to step up to address the under-recognised field.
Long covid was the focus for lawmakers, clinicians, researchers and people with lived experience at today’s annual parliamentary friends of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) gathering.
One patient, 17-year-old Henry Barker, shared his story on how the condition has affected his life.
“ME/CFS and long covid is lonely, on top of the loneliness pandemic that teenagers already face,” he said
“The frustration that people don’t know what long covid is very difficult to live with, especially as you’re trying to progress further, not only in your health, but socially.”
Enacting effective ME/CFS reforms has been reportedly slow, per the hearing, with little action thus far on the 2024 government inquiry’s recommendations.
One such recommendation was to establish specialist centres for the condition in each state to facilitate medical research looking into the underlying causes.
Dr Emma Tippett, representing telehealth group Clinic Nineteen, said that the current actions taken to support ME/CFS were disproportionate compared to the number of Australians who are affected.
“I feel personally that long covid is the biggest health crisis to-be that Australia has encountered at this stage,” Dr Tippett said.
“The document here says that there’s 400,000 people in Australia with long covid, other estimates say up to a million.
“The reason that we don’t know how many people are not able to work because of long covid is because long covid is an invisible illness.
“Covid is estimated to affect 1% of the GDP, which is $1 trillion – but this figure doesn’t capture the full picture or the human costs.
“It doesn’t describe the unpaid care burden falling on families, the mental health impact on households, the downstream costs of increased medical usage and the lives that have been changed forever by long covid.”
“The cost of doing nothing vastly outweighs the costs of acting.”
Dr Tippett also noted that there are only three publicly-funded long covid clinics remaining in Australia, and no paediatric services.
The government inquiry strategy of siphoning said patients into chronic disease pathways was criticised due to current Medicare rebates not allowing for long enough consults to manage the condition.
Members of parliament were also in attendance, with both Independent MP Dr Monique Ryan and assistant minister for health and aged care Rebecca White also pushing for reforms.
The newly legislated Centre for Disease Control was mentioned as a potential support for managing long covid.
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“We clearly haven’t met the care of people affected by long covid since 2023 as well as we could have,” Dr Ryan said.
“I thought was a great shame that the Albanese government ended, the scheme where we monitored people for the side effects of covid vaccinations and compensated them and supported them for those side effects, which were clearly real and problematic.”
Ms White echoed similar sentiments along with reiterating how public awareness of the condition has been impeding effective reform, in addition to outlining what current projects are on the way to assist those with ME/CFS.
Chief medical officer Professor Michael Kidd also delivered a statement on the rollout for the strategic framework for chronic conditions from 2026 to 2035.
“The new framework encourages a collaborative approach, engaging governments, health professionals and community organisations to build a unified response that addresses the social determinants of health by taking decisive action now,” Professor Kidd said.
“The new program ensures that future investments by government are going to be focused on early detection, continuity of the management of multiple chronic conditions and advancing health equity for priority populations.
The Australian Government has committed $109.9 million over the next three years to support this programme with each year ongoing from 2029 funding will be allocated to initiatives that show measurable, sustainable improvements in chronic condition outcomes.”
