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The Silent Voices of ME/CFS

A Lack of Medical Knowledge on Post-Infection Disease is a Clear and Present Danger to All Australians.

Current medical predictions suggest up to 325,000 people may be affected by Long COVID, in addition to the 250,000 currently living with ME/CFS. Such post-infection diseases will be the foundation of a major attack on the Australian community in coming years, threatening national and state budgets.

Post-Infection Disease

Post-Infection Disease can be triggered by bacteria, viruses and parasites. The acute symptoms of these illnesses, and the organ damage they cause, can be very different. However, for a small percentage of people, there can be a lingering illness that can appear quite similar in symptomatology and possibly even underlying biology.[1],[2] Up to 1% of Australians live with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)[3],[4], 75% of whom recount their symptoms starting after an infection. Other post infection illnesses include Long COVID, post-Ebola syndrome and Q fever fatigue syndrome.[5] Like ME/CFS, pathogens like Epstein Barr Virus, Ross River Virus and Giardia lamblia have also been linked to post infection diseases.[6] For example, recent research suggests multiple sclerosis may be caused by Epstein Barr Virus.[7]

Women will account for seventy-five per cent of people affected.

Anne Wilson, CEO of Emerge Australia, urges Federal and State Governments to consider the creation of a 10th National Health Priority Area for Post Infection Disease. Ms Wilson said we need to learn from the loss of billions of dollars to the economy and untold impact of Long COVID and ME/CFS on the Australian community.

Ms Wilson said:

“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 been created which is exactly the approach needed now to deal efficiently with Long COVID and ME/CFS among other post infection diseases.”

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.

Ms Wilson said:

“a National Post-Infection Disease Strategy would address the interfaces between post-infection disease efficiently, systemically, and programmatically.”

“Such a strategy would alleviate the current siloed approach, providing a platform to address the needs of Australia’s 250,000 people with ME/CFS, plus the hundreds of thousands of other people with other post-infection illnesses, access to a better trained and equipped medical profession which is currently under extreme pressure.”

Emerge Australia’s Medical Director, Dr Richard Schloeffel OAM, believes we should 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, despite vaccination.

“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 both ME/CFS and Long COVID.”

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

[1] L. Komaroff & W. Lipkin (2021). ‘Insights from myalgic encephalomyelitis/chronic fatigue syndrome may help unravel the pathogenesis of postacute COVID-19 syndrome’ Trends in molecular medicine, 27:9.

[2] J. Choutka, V. Jansari, M. Hornig, et al. (2022). “Unexplained post-acute infection syndromes.” Nat Med 28, 911–923.

[3] L. Jason, et al. ‘A community-based study of Chronic Fatigue Syndrome’ Arch Int Med, 159 (1999).

[4] L. Lorusso, et al. ‘Immunological aspects of chronic fatigue syndrome’ Autoimmun Rev, 8 (2009)

[5] J. Choutka., V. Jansari, M. Hornig, et al. (2022). “Unexplained post-acute infection syndromes.” Nat Med 28, 911–923.

[6] J. Choutka., V. Jansari, M. Hornig, et al. (2022) “Unexplained post-acute infection syndromes.” Nat Med 28, 911–923.

[7] K. Bjornevik, M. Cortese, B. Healy, et al. (2022). “Longitudinal analysis reveals high prevalence of Epstein-Barr virus associated with multiple sclerosis” Science 375:6578. pp 296-301.

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