Emerge Australia
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Australia's Lack of Research into ME/CFS
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Emerge Australia, the national patient organisation providing services and evidence-based education about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) today issued an alert on a potential major financial and medical resource hit to the Federal Budget and Health Services.
Anne Wilson, CEO of Emerge Australia, said it is estimated that 250,000 Australians live with ME/CFS.
Approximately 25 per cent of whom, (60,000+ people), have symptoms so severe they are housebound or bedbound and dependent on carers. Deakin University Research Report recently suggested up to 325,000 more Australians may develop Long COVID in the coming months adding to the quarter of a million existing patients,
Dr Richard Schloeffel OAM, the Medical Director of Emerge Australia a specialist in ME/ CFS said Australia has dropped the ball on myalgic encephalomyelitis/chronic fatigue syndrome research and funding which dramatically impacts 250,000 patients across the country and will blow out the health budget costs if there is no concerted action to fund research.
Emerge Australia's 2019 Health and Wellbeing Survey revealed 89% of respondents ceased or significantly reduced paid work after their illness onset. In another study, a literature review of studies published between 1966 and 2004, found unemployment rates ranged from 35% to 69%.
"More than two-thirds of ME/CFS patients are living below the poverty line. ME/CFS also has a profound impact on carers, particularly those who support the 25% of patients who are house or bedbound."
Dr Schloeffel said 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 depression, he said.
