We must push for Post-Infection Disease to become the 10th National Health Priority Area (NHPA) in Australia.

We may anticipate that as COVID-19 becomes endemic in the future, so too will be an ongoing stream of patients whose infections develop into Long COVID, even if they have been vaccinated. Our health systems must move quickly to support this growing cohort of post infection patients, and to manage the impending public health crisis and consequent economic impacts posed by Long COVID.

Support for Australians living with Long COVID and ME/CFS currently exists in silos. The burden of disease for ME/CFS, as described above, should be read as a warning about the potential impact of Long COVID.

Since 1999, the Federal Department of Health has sought to focus public attention and health policy on those areas considered to contribute significantly to the burden of disease in Australia, and for which there is potential for health gain. Accordingly, as a collaborative effort involving Commonwealth, State and Territory governments, ten National Health Priority Areas (NHPA’s) have already been created.

This is an opportunity for the new Federal Health Minister, the Hon Mark Butler, with bipartisan support across Federal and State Governments to focus on post-infection disease by investing in and creating a National Post-Infection Disease Strategy aimed at ultimately cutting the human and financial cost to the community of Long COVID and ME/CFS.  

Impacts of disbelief and inadequate clinical care

Despite proven not to be a psychiatric illness, many medical practitioners continue to deny the physiological roots of ME/CFS, making it difficult for patients to access appropriate care. Only 31% of respondents to Emerge Australia’s 2019 survey regarded health professionals as a key source of information about their disease. Dismissive attitudes among doctors have contributed to persistent misconceptions about ME/CFS and influenced inadequate teaching of ME/CFS to undergraduate and post graduate students.

Numerous research studies have identified patients feeling dismissed, negatively stereotyped and stigmatised after attending health care services. ME/CFS patients whose condition is questioned and stigmatised by clinicians, family and friends are more likely to experience suicidal ideation than those who do not experience such stigma.

Delays in diagnosis

ME/CFS patients often experience long diagnosis delays due to GPs’ lack of knowledge and understanding of the disease. On average, it takes two to five years for a ME/CFS patient to receive a diagnosis from onset of symptoms. This delay in diagnosis can serve to exacerbate the condition. In some cases, exacerbation of symptoms and disability can be permanent.

Decades of poor experiences with medical services have left many patients disempowered, and it is crucial that efforts are made to build trusting relationships between practitioners and those in their care.

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To see our other stories and read more about our push for a national post-infection disease strategy, click HERE.