TRANSCRIPT
Leigh-Anne Sharland had always been a high performer at work, but last year everything changed.
She had an adverse reaction to a COVID-19 booster in February 2022 and a few months later she caught the virus.
Now, she can no longer work and struggles with everyday activities due to ongoing cognitive impairment, commonly referred to as 'brain fog'.
Leigh-Anne told SBS her symptoms have made it impossible to function at her previous level both professionally and socially.
"I have been in the data profession for the last 40 years. So I've had to leave my job. But I've been at the leading edge of data, using computers since they were first introduced to banking, and I can't use a computer without getting extremely exhausted."
Leigh-Anne is still experiencing debilitating symptoms.
She struggles with Zoom calls, reading, and sometimes verbal communication and remembering words.
"So the brain fog is related to the exhaustion which is invisible. And people are so used to people getting better really quickly. Like, I'm embarrassed, when people ask me how am I? I lie and say okay, well I am okay in relation to my current okay-ness. But I'm not okay."
These cognitive issues are symptoms of long COVID which she was diagnosed with after extensive testing.
According to the Department of Health and Aged Care, problems with memory and concentration - also referred to as 'brain fog' - are some of the most common symptoms of long COVID, along with shortness of breath and fatigue.
Chair of Epidemiology at Deakin University, Catherine Bennett, says the condition can be temporary and mild, or continue long-term and prevent people from being able to work and function at their normal level.
"For some people it's a bit more intermittent, they'll describe it as something that they can have bad days. And then you might have some good days, but you're never quite sure how it's going to play out. So it can be things as simple as poor concentration which I think is what people often think of. But it can be a bit more disabling, it can be feeling confused, or being a bit slow in your thinking."
It's difficult to identify how many people are experiencing long COVID.
A new study by Nature Medicine has inspected multiple biomarkers, or substances in blood, which help diagnose people with the condition.
Researchers examined more than 1,800 British people hospitalised with COVID-19 between early 2020 and late 2021 who had self-reported issues and had cognition tests with clinicians six and 12 months after hospitalisation.
Ms Bennett says inflammation is a significant cause of these neurological disruptions, but is also linked to other physiological responses.
"It's not just if you've had it or have ever had it. But if people are facing this relapsing condition that they can't quite shake, and they're never fully recovering, then you know, biomarkers can be really important to help identify who they are, and then look at the risk factors that put people in that group. Help us get a measure of burden, and know how many people fall into that group. And also importantly, help us understand some of the mechanisms of the condition that could point to other ways to help with therapy."
Leigh-Anne was forced to sacrifice thousands of dollars of her own money on appointments with neurologists, endocrinologists, and a host of other specialists.
But Leigh-Anne is also grappling with a loss of identity.
"So I've got young grandchildren and I can't spend more than an hour with them because I'm exhausted, and I don't want them to see their grandma sick. So before all this, I was extremely mobile, workaholic, you know, thought leader in my field of expertise. I lost my identity, because my job was my identity. And I've had to go through grieving that."
Marie-Claire Seeley is a clinical nurse and PhD candidate at the University of Adelaide who has done extensive work and research in post-viral conditions.
She said there were numerous limitations in the biomarker study, including the cohort studied and a lack of information on their previous cognitive state.
"If you went and enrolled every person that had an acute admission to hospital without COVID infection, and looked at their cognitive problems six or 12 months down the track, you possibly would find very similar findings. And that's because any acute illness, particularly things like stroke and cardiovascular disease, cause inflammatory response in the body. And we know that people can get cognitive dysfunction from those illnesses."
For long COVID sufferers like Kristen Fraser, any research into long COVID and cognitive impairment is welcome.
The 42-year-old was a fit and healthy primary school teacher before she contracted COVID-19 in January 2022.
A year and a half later, she has still not recovered and continues to experience exhaustion and cognitive issues.
She stopped working completely for six months and is now teaching two days per week.
"I think that anything that might look at reasons why people get long COVID or how they can climb their way out of it would be helpful. There's just not enough research. I think about, I don't know how I'm going to feel tomorrow, let alone what I can plan to do next week, or next term, or can I work next year? But that's the hardest part, is that there doesn't seem to be, there's no news. I guess no one really knows what's going to happen long term."
