On International ME/CFS Awareness Day, the Australian Greens extended our strong support for improved health outcomes for the 250,000 Australians living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
The Australian Greens recognise that the Australian government is not doing enough to support people living with ME/CFS and we are committed to improving health outcomes so that they are person-centred and engage a holistic team-based approach to health management. We also recognise that as COVID-19 spreads and the prevalence of long Covid grows, a significant percentage of those with long COVID will go on to develop ME/CFS, creating an urgent need for a plan to support people living with the ongoing impact of COVID-19.
We understand and hear the frustrations of the ME/CFS community who have been ignored and dismissed for too long. Patients and family members are routinely disadvantaged by social welfare and medical care systems which fundamentally do not understand the nature and effects of the conditions.
The Greens spokesperson for Health, Senator Jordon Steele-John announced the Greens commitment whiches includes:
- Creating a $15 million fund that would be administered by the National Health and Medical Research Council (NHMRC). This funding would enable Australia’s ME/CFS experts to continue and expand research in areas such as:
- A diagnostic test for ME/CFS
- Understanding differences in metabolites
- Pharmaceutical trials for the identified calcium channel ion defects
- Identifying ways to improve the mitochondrial function of people with ME
- Genomics studies to understand how variation in a genotype relates to changes in the phenotype at the molecular or cellular level
- Convening a national ME/CFS Summit bringing together the patient advocacy groups, biomedical researchers, clinicians, and key government bodies including the National Disability Insurance Agency (NDIA), the Department of Human Services (DHS), and the Department of Social Services (DSS).
Increasing funding to ME/CFS peak advocacy organisations as part of our plan to boost disability advocacy funding by $11.3 million over four years. This will enable patient advocacy groups to work directly with medical bodies to develop specialised training for practitioners and providers
Ensuring that NDIA access guidelines reflect the latest clinical understanding of ME /CFS, and properly fund the agency so that it is able to develop a dedicated ME/CFS participant pathway. This will enable ME/CFS patients to access the scheme with ease
Senator Steele-John, Australian Greens spokesperson for Health and Disability Services said:
"The Greens are committed to ensuring that people with ME/CFS are not left behind by the federal government in the new parliament, and I will work to amplify the voices of those with ME/CFS and reignite meetings of the Parliamentary Friends of ME/CFS group to ensure these issues are heard and actioned at a parliamentary level;"