Our policymakers must prepare now for the coming economic, health and social impacts of ME/CFS, Long COVID and other post-viral diseases

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has been devastating Australians’ lives for decades. Long COVID has been with us just two years and is described by health experts as ‘strikingly similar’ to ME/CFS in its causes, symptoms, pathology and debilitating effect on people’s lives.

250,000 Australians already live with ME/CFS and Deakin University predicts up to 325,000 more may develop Long COVID in the coming months1. The human cost of post-viral diseases is obviously paramount, but the economic cost is also potentially devastating.

According to a 2020 estimate, the cost of ME/CFS to the Australian economy is $14.5 billion2.70% due to loss of income, 24% to direct personal out-of-pocket costs and 6% as a cost to government and the health care system3If Long COVID more than doubles the number of patients with post-viral diseases, it will significantly add to this burden.

Most patients experience ME/CFS as a permanent condition4, so the economic impact stretches far into the future. It is unclear whether the same is true of Long COVID, though similarities between the two conditions suggest it likely.

For people with ME/CFS, capacity to work is typically severely compromised, leading to very high unemployment rates5. As the graph below shows, people with ME/CFS are able to work less hours per week than those with Multiple Sclerosis6.

Work/study capacity by hours per week, comparing healthy people with ME/CFS and multiple sclerosis7. 

Emerge Australia’s 2019 health and wellbeing survey revealed 89% of respondents ceased or significantly reduced paid work after their illness onset; another study found unemployment rates ranged from 35% to 69%8.

ME/CFS patients spend considerably more on health care than the general population and visit healthcare providers more often9,10. This is despite most experiencing major difficulties accessing healthcare due to their illness, systemic barriers and financial considerations11,12,13. More than two-thirds of ME/CFS patients are living below the poverty line14. 

ME/CFS also has a profound impact on carers, particularly those who support the 25% of patients who are house or bedbound. Emerge Australia’s 2019 health and wellbeing survey reported 90% of carers were financially unsupported in their role15, which causes inter-generational financial burden in the case of parents, and compounds financial stress for domestic partners16.

The total average, annual cost per person with ME/CFS in Australia is $75,697, the vast majority being borne by the patient: $71,215, versus healthcare costs met by the government of just $4,48217.

For someone with ME/CFS, every aspect of their life is impacted by their symptoms. Those even moderately unwell are often socially isolated, unable to work and require assistance with daily living. They have worse employment, mental, social and physical health outcomes than diseases such as multiple sclerosis, HIV/AIDS, cancer and depression18,19,20.

More understanding, education, research funding and access to services will change the current, bleak outlook that people with ME/CFS, Long COVID and other post-viral disease face. Tailored and appropriate health care and support will enable individuals to achieve a better quality of life and for some to potentially return to work, study and social activities.

Emerge Australia has decades of knowledge and experience that can help the post-viral disease patients coming from Long COVID, and support them in the challenges they will face accessing the right health and social care.

Even at the most optimistic predictions, there is no escaping that the impact of a tsunami of post-viral disease on the Australian economy will be significant. But if our policymakers see it coming and take appropriate action with meaningful investment, we can hopefully avoid this impact becoming catastrophic.

In the coming weeks, Emerge Australia will release a State of the Nation report. Subscribe to receive a copy and to find out how you can send a message to your local MPs to help bring about the changes Australia needs now.

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  1. M. Henscher and MR Angeles (2021). ‘Potential scale of Long COVID cases from the Omicron wave in Australia: Summer 2021-2022’ Institute for Health Transformation, Deakin University, Melbourne. Available at: https://iht.deakin.edu.au/wp-content/uploads/sites/153/2022/02/Long-COVID-Omicron-briefing-paper-IHT-02-2022.pdf.
  2. S. Close, S. Marshall-Gradisnik, J. Byrnes, et al. (2020). ‘The Economic Impacts of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in an Australian Cohort’ Front Public Health 8:420.
  3. Close, et al. ‘The Economic Impacts of Myalgic Encephalomyelitis’.
  4. J. Baraniuk. ‘Chronic Fatigue Syndrome: BMJ Best Practice guideline’ BMJ (2017) (updated August 2018). Available at https://bestpractice.bmj.com/topics/en-gb/277 (accessed 20 January 2022).
  5. Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Board on the Health of Select Populations, & Institute of Medicine (2015). ‘Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness’ National Academies Press (US).
  6. C. Kingdon, E. Bowman, H. Curran, et al. (2018). ‘Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls’ PharmacoEconomics - Open 2:4..
  7. Kingdon, et al. ‘Functional Status and Well-Being in People with Myalgic Encephalomyelitis’.
  8. R. Taylor and G. Kielhofner (2015). ‘Work-related impairment and employment-focused rehabilitation options for individuals with chronic fatigue syndrome: A review’ Journal of Mental Health, 14:3.
  9. S. Twemlow, et al. (1997). ‘Patterns of utilization of medical care and perceptions of the relationship between doctor and patient with chronic illness including chronic fatigue syndrome’ Psychological Reports, 80:2.
  10. S. Thanawala and R. Taylor (2007). ‘Service utilization, barriers to service access, and coping in adults with chronic fatigue syndrome’ Journal of Chronic Fatigue Syndrome, 14:1.
  11. J. Lin, et al. (2011). ‘The economic impact of chronic fatigue syndrome in Georgia: Direct and indirect costs’ Cost Effectiveness and Resource Allocation, 9:1.
  12. Committee on the Diagnostic Criteria for ME/CFS. ‘Beyond Myalgic Encephalomyelitis’, pp. 31-33.
  13. Thanawala and Taylor. ‘Service utilization.
  14. Emerge Australia (2019). ‘Health and Wellbeing Survey 2019’, available at https://www.emerge.org.au/health-and-wellbeing-survey-2019.
  15. Emerge Australia. ‘Health and Wellbeing Survey 2019’.
  16. Emerge Australia. ‘Health and Wellbeing Survey 2019’.
  17. Close, et al. ‘The Economic Impacts of Myalgic Encephalomyelitis’.
  18. Kingdon, et al. ‘Functional Status and Well-Being in People with ME/CFS’.
  19. L. Nacul, et al (2011). ‘The functional status and well being of people with 
  20. myalgic encephalomyelitis/chronic fatigue syndrome and their carers’ BMC Public Health, 11.
  21. M. Núñez, et al (2008). ‘Health-related quality of life in chronic fatigue syndrome versus rheumatoid arthritis as control group’ Journal of Chronic Fatigue Syndrome, 14.