As Australia struggles with rising infection rates from the Omicron variant of COVID-19, researchers at the University of Adelaide are grappling with the likely aftermath of the pandemic, especially for people suffering from illnesses such as long COVID.
PhD researcher, clinical nurse consultant, and founding director of the Australian Postural Orthostatic Tachycardia Syndrome (POTS) Foundation, Marie-Claire Seeley says bundling the various symptoms - fatigue, brain-fog, joint pains, heart palpitations - reported by many people who have had the virus into one label as long COVID, is far too simplistic and masks the lasting impact of infection with COVID-19.
"We are learning from various overseas studies that the impact of COVID-19 can be much more serious than a couple of months of feeling tired post-infection," Seeley says.
"Research coming out of the UK and the US is showing relatively large numbers of people are experiencing ongoing symptoms post the virus, six months after catching it - with many people unable to return to work as much as a year later, and still others who have life limiting disabilities.
"Much of this is uncharted territory for doctors and researchers, but we have long understood that post-viral syndromes do exist, are hard to pin down, and unfortunately, can be misdiagnosed or dismissed as anxiety."
Seeley says one such post-viral condition, Postural Orthostatic Tachycardia Syndrome (POTS), is already being experienced by people who have had COVID.
POTS affects the autonomic or (involuntary) nervous system which controls many of the unconscious body functions including, heart rate and blood pressure regulation, bladder regulation; gut movement and digestion; temperature control; and stress responses.
Adelaide has one of the largest and most active Australian clinics studying POTS, led by Cardiologist and Clinical Professor at the University of Adelaide, Prof Dennis Lau, with specific work aiming to differentiate the symptoms of POTS from other longer-term impacts of COVID-19.
"POTS does not show up in a regular blood test and the high heart rate is all too easily brushed off as anxiety by those not in the know." Marie-Claire Seeley, the University of Adelaide
POTS, like many autoimmune conditions is more common in women (5:1 ratio) and can be the result of traumas such as car accidents or concussion, but can also occur post-pregnancy, viral infections, serious flus or glandular fever (Epstein-Barr virus).
"Given what we know about the syndrome, while most people who contract COVID will recover fully, we can expect that some will be at risk of suffering from POTS post their infection, with potentially lasting and devastating effects," Seeley says.
"It is vital that POTS is on the radar for doctors because acting quickly to identify the syndrome and assemble the right treatments can make all the difference to the recovery process for these patients."
As with many autoimmune conditions, POTS has various symptoms and can vary in severity, so the condition can wane and flare, adding to difficulties in diagnosis.
Symptoms include racing heart rate, inexplicable and intense fatigue, shortness of breath, brain-fog, headaches, nausea when eating and gut problems such as diarrhoea (sometimes with consequent weight loss).
"POTS does not show up in a regular blood test and the high heart rate is all too easily brushed off as anxiety by those not in the know," Seeley says.
One of the key concerns for those who contract POTS is not only poor diagnosis but also lack of dedicated research, compounded by the fact that the condition is not yet described in the International Classification of Diseases, leading to uncertainty about exact numbers of individuals impacted by this devastating condition.
"This is one of those negative research loops - as an undescribed condition it fails to attract research investment, and without proper investment, it continues to lag in attracting dedicated researchers," Seeley says.
"Two of the most effective treatments in combatting the symptoms of POTS are not available through the PBS, so on top of the actual health consequences of the illness, patients would need to pay for expensive medications with no subsidy.
"As we come to grips with the fallout from COVID, we may see a significant increase in the incidence of POTS and the best hope for people living with this debilitating condition is that governments, health ministers, and health authorities respond to their needs with more research investment and support for the medications that can help mitigate the symptom."
The POTS research team is keen to recruit volunteers from South Australia and Victoria who have lingering symptoms three months after Covid-19 infection to further their research into the syndrome.
