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This chapter presents data collected by Australians living with Long COVID during a period when governments worldwide systematically dismantled monitoring capabilities. Drawing on three surveys conducted by the Australia Long COVID Community Facebook group in 2022 and 2023 to inform responses to government inquiries, we document the lived experiences of more than 1,200 respondents from a membership exceeding 4,500 people. Our findings illuminate the social impact on families and communities, the economic challenges of maintaining employment and accessing government benefits, and the increased burden of navigating health systems ill-equipped to address chronic complex conditions. By detailing the effects of epistemic injustice in our lives, we speak out against the structural silencing that creates a vacuum in which Long COVID policy is discussed and framed.

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We Will Not Be Silent: The Australia Long COVID Community Speak Out About the Role of Epistemic Injustice in Erasing Evidence of Long COVID in Australia

  • 章节

  • 发表日期：

    2025年

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  • Robin Austin,
  • Kirsty Yeates,
  • Su Mon Kyaw-Myint,
  • Ruth Newport,
  • Pippa Yeoman

摘要

This chapter presents data collected by Australians living with Long COVID during a period when governments worldwide systematically dismantled monitoring capabilities. Drawing on three surveys conducted by the Australia Long COVID Community Facebook group in 2022 and 2023 to inform responses to government inquiries, we document the lived experiences of more than 1,200 respondents from a membership exceeding 4,500 people. Our findings illuminate the social impact on families and communities, the economic challenges of maintaining employment and accessing government benefits, and the increased burden of navigating health systems ill-equipped to address chronic complex conditions. By detailing the effects of epistemic injustice in our lives, we speak out against the structural silencing that creates a vacuum in which Long COVID policy is discussed and framed.