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Experiencing back-to-back influenza and COVID-19 infections in March 2020 changed former intensive care nurse Julie Mirtschen's life. "I'd been hiking, I had been out doing weight training, working full-time, and within two weeks I couldn't walk up the stairs properly," Ms Mirtschen said. The 43-year-old, who now lives in Port Macquarie on New South Wales' Mid North Coast, was diagnosed with long COVID in 2021. She said the condition also triggered a Postural Orthostatic Tachycardia Syndrome (POTS) diagnosis, and caused significant heart problems and debilitating fatigue. It also forced her to scale back to part-time work, impacting her financially. "I've lost my career. I can't do shift work like I used to," Ms Haskey said. "I can't socialise like I used to, play sport like I used to, all of that is taken away. A battle to get help According to researchers from the University of New South Wales, Ms Mirtschen is one of up to 870,000 Australians currently living with long COVID. Ms Mirtschen said it took several months to get a long COVID diagnosis and thousands of dollars spent travelling to specialist appointments, with one GP suggesting her symptoms were psychological. She said a friend recommended Melbourne-based, virtual, long COVID clinic, Clinic Nineteen. Switching to the specialised service this year has been "a light at the end of the tunnel." "It's a recognition we do need a lot of support. We need access to these services." Limited access to long COVID services There are just three remaining publicly run long COVID clinics across Australia, according to new research by RMIT's Rose Luo and Zhen Zheng. Six public hospital long COVID services have also closed since 2023. New South Wales' only in-person public clinic at St Vincent's Hospital in Sydney was the latest closure in September. It left only a virtual service through the Sydney Local Health District, a public long COVID clinic in Victoria, and another in Western Australia. Clinic Nineteen founder Dr Emma Tippett said Ms Mirtschen's struggle to get treatment was unfortunately common, with others also told they were "anxious or had mental health issues" when seeking help. She said while awareness of the condition was improving, there was still a long way to go in understanding and treating the "incredibly complex" disease. "We're seeing a shift, and GPs and medical professionals are accepting that long COVID is real. "But we still struggle with the belief there's nothing you can do about it. There is a lot you can do." A focus on primary care A primary care model focusing on GP-led treatment was adopted by the federal government after a 2022 long COVID parliamentary inquiry. GP and director of a Geelong-based long COVID clinic, Dr Jenny Huang, said while GPs were well-placed to manage the chronic needs of long COVID patients, they had not received adequate support to navigate the transition. "GPs … especially in regional and rural areas, are already so stretched and under the pump. A new Royal Australian College of GPs working group, formed last month, is working to address these issues and develop new long COVID training for doctors. 'A long road' to treatment Long COVID patient Karen Haskew, who lives at Ellenborough on the NSW Mid North Coast, said an ongoing treatment plan with her GP was crucial for her recovery. Ms Haskew developed the disease after contracting COVID-19 on board the Ruby Princess cruise ship in Sydney in 2020 and said a resulting brain condition and partial vision loss had forced her to close her arts business. "It's been a long, long road," Ms Haskew said. "It's taken me until this year to get past three o'clock in the afternoon without having to crash." She said while she relied on her savings and husband for care, she felt for others. A NSW Health spokesperson said while most people with long COVID would be supported by their GP, those with severe symptoms were referred to relevant public or private clinics available through the "post COVID-19 conditions Health Pathway." ABC News contacted federal Health Minister Mark Butler for comment regarding public clinic closures and improving access to care for long COVID patients. He said $50 million had been invested into the Medical Research Future Fund for long COVID research, with "a further $50 million for research into innovation in primary care".
