How ME and Long COVID patient experiences can guide health policy in Australia

Breanna Weigel
Breanna Weigel is a fourth-year PhD candidate at the National Centre for Neuroimmunology and Emerging Diseases, Griffith University.
Breanna’s current PhD studies investigate the patient experiences of people with ME/CFS and people with Long COVID in Australia to guide health policy reforms and improve care pathways for patients.
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How ME and Long COVID patient experiences can guide health policy in Australia
Breanna Weigel & Rebecca Haddock
People with Myalgic Encephalomyelitis (ME) and people with Long COVID experience debilitating symptoms and limitations to their ability to participate in typical activities of daily, working, and social life.
Consequently, multidisciplinary care and support is paramount to enable people living with these illnesses to achieve their best possible quality of life and functioning.
However, many people with ME and people with Long COVID in Australia face difficulty in accessing necessary services or are deemed ineligible for
support.
This is largely attributable to a lack of recognition and representation of patients’ lived illness experiences at the federal health policy level.
Health policy issues across three key areas, including “Identification”, “Recognition”, and “Consumer Engagement”, must be addressed to
improve the accessibility and appropriateness of care and support services for Australians living with ME or Long COVID.
Specifically, reforms to Australian health policies should ensure: 1) improved public health monitoring of ME and Long COVID; 2) recognition of the disabling nature of these illnesses; 3) collection of patient-reported experience data among these cohorts nationally; and 4) coproduction of services with consumers.
These recommendations must be prioritised to maximise health outcomes for all ME and Long COVID patients in Australia.
These findings have been published as a Health Policy Issues Brief developed in collaboration with the Deeble Institute for Health Policy Research.
This publication is entitled “How patient experiences can guide the development of Long COVID health policy” and is accessible via:
doi.org/10.25916/b246-r560.
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