Chicago-based neurologist Igor Koralnik worked on the front line of the HIV epidemic and cannot help but draw comparisons to long COVID.
Dr Koralnik was a young medical student in Switzerland in the 1980s when he became fascinated with the neurological impact of HIV on the young men contracting the virus.
“So, when the pandemic started, and we soon realised that COVID-19 was affecting the nervous system as well, it was kind of a natural segue for me,” he said.
Now Dr Koralnik is the chief of neuroinfectious diseases and global neurology at Chicago’s Northwestern Memorial Hospital.
He has overseen the treatment of more than 2000 long COVID patients and published more than two dozen studies on the subject.
As the Northwestern Memorial Hospital has worked to expand its long COVID operations, he has been bewildered to learn Australia is going in the opposite direction.
The ABC has found that of an estimated 23 clinics established in Australia, five have closed or scaled back operations after cuts to funding.
“We have been actually ramping up because we realised that there is a continued need for … long COVID care,” Dr Koralnik said.
It is a call echoed by the Royal Australasian College of Physicians (RACP), which wants urgent reinvestment in long COVID clinics.
A parliamentary inquiry into long COVID estimated that between 200,000 and two million Australians have some form of long COVID, which can include more than 200 symptoms.
Long COVID inquiry definition debate
The definition of long COVID can range from symptoms lasting more than four weeks to three months.
Jennifer Mann, president of the RACP’s faculty of rehabilitation medicine, said the closure of clinics meant thousands of patients were missing out.
She said as a new COVID-19 wave swept through the country, the number of patients who needed help could rise.
“There’s a risk that once you have a second dose of COVID, that the risk of some of those more serious long-term problems, such as cardiac problems, actually increases,” Dr Mann said.
“We all think that because the crisis has gone, that COVID is gone. COVID hasn’t gone.”
Long COVID services lag behind, research finds
Research by RMIT University compared Australia’s long COVID services, guidelines and public health information with international standards and found it was lacking in adequate multidisciplinary long COVID services and early investigation.
“We have insufficient long COVID clinics to meet the demand,” said co-lead author Shiqi Luo.
Su Mon Kyaw-Myint, who lives with long COVID after contracting the virus in 2022, said the impact on some people had been devastating.
“I know people who have become homeless [and] can’t pay for food because they are no longer able to work due to long COVID,” she said.
“I feel like we are fairly forgotten.”
Long COVID clinics still have benefits
Steven Faux, from St Vincent’s Hospital Sydney’s long COVID clinic, said while there was “never a really clear plan for the management of long COVID”, patience was key for those living with it.
“One of the reasons patients feel frustrated is that there’s no magic cure,” he said.
“The disease is so complex you’re not going to get single treatments.
“It’s a long slow process.”
Dr Koralnik said he still had months of waiting lists to attend the clinic, but the help available was largely dependent on the symptoms being experienced by patients.
His team also assesses whether other medical issues could be behind symptoms and they check for hormonal problems or sleep apnoea.
His research, a two-year-long retrospective study of 1800 patients at his clinic between 2020 and 2022 published in the American Journal of Medicine this year, found 49 per cent needed help with neurology, 25 per cent needed help with respiratory issues and 12 per cent had cardiac problems.
“It’s not a one-size-fits-all. What we do is precision medicine,” Dr Koralnik said.
For symptoms like brain fog, his team assesses whether it is affecting memory, processing speed, attention or executive function and tailors rehabilitation to match.
The recent parliamentary inquiry into long COVID heard there were not enough clinics in Australia to address the issue.
It called for more help for GPs and joint state and federal funding of long COVID clinics for people living with severe cases.
In a statement, the federal health department said it did not provide specific funding for long COVID clinics but had already allocated more than $14 million for research and another $50 million for related areas.
For Su Mon Kyaw-Myint, her experience with a long COVID clinic was mixed. She found exercise physiology unhelpful but said occupational therapy had a positive impact on her brain fog.
“They sat down with me and taught me how to pace myself and how to help the memory recall,” she said.
Su Mon Kyaw-Myint helps run the Australia Long Covid Community Facebook page, which has more than 4500 members.
A survey of 600 of its members found more than two-thirds felt that long COVID clinics were not helpful and the quality varied widely.
“The feedback we got was that they were just focused on physical rehabilitation and not really offering them the real multi-disciplinary approach,” she said.
She said more funding was needed to make sure long COVID clinics could better cater to patients.
She said patients just wanted to stop being shuffled around the medical system.
“We just want a clinic that is really across all the latest research and all the latest treatments,” she said.
Have you or someone you know experienced long COVID? What help were you able to access? Share your journey in the comments section below.
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Many Long Covid patients go on to develop ME/CFS where here in Australia there is very limited medical training knowledge and no effective treatments and poor support of patients who are greatly affected with ME/CFS. Past history of treatments for ME/CFS has been CBT and Graded Exercise Therapy which was found lacking as an effective way forward. This approach has been debunked through studies but there is still a few medical people who pursue this line of approach in treatments. I have seen on TV Long Covid clinics full of exercising people. I am sure that some will benefit but many will be feel and become much more disabled after an exercise program as this happens with most ME/CFS patients.