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State of the Nation: Because people with ME/CFS matter

Australia must address the needs of the increasing number of people with post-infection disease such as ME/CFS and Long COVID. This requires medical and health education, research, tailored supports and policy change.

Our State of the Nation Report was updated in November 2023. It reflects new research about the similarities between Long Covid and ME/CFS, and the Disability Royal Commission Final Report. 

ME/CFS often develops after contracting a viral or bacterial infection. It shares many symptoms, pathology and impacts with Long COVID.  Concerted research and policy to address the needs of people with these conditions is much needed, and quickly.  

Some people with ME/CFS, Long COVID and other post-infection illnesses live with disability every day.  In 2023 the Disability Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability released its final report. It detailed the discrimination, violence and neglect people with disability, including people with ME/CFS, experience. Emerge Australia is hopeful that the Government accepts recommendations for a Disability Rights Act and amendments to the Disability Services Act.  These promise tailored health care and support for individuals, enabling them to achieve a better quality of life and, for some, potentially return to work, study and social activities.  

State of the Nation highlights new possibilities for people with post-infection disease and those living with disability.  Emerge Australia continues to advocate for: 

    1. GP education
    2. Coordination of care and allied support services 
    3. Funding for collaborative translational research
    4. Updated Australian Clinical Guidelines 
    5. Policy change 
      • National Post-infection Disease Syndrome Strategy  
      • Post-infection Disease Syndrome becoming the next National Health Priority  
      • Expand Emerge Australia’s telehealth support services 
      • Enable equitable access to government support  
      • Develop tailored NDIS and Disability Support Pension assessment guidelines. 
      • Create ‘Link’ workers for health

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