‘Taking Charge’ of Long Covid
Debrah says she wouldn’t wish long COVID on her worst enemy.
One year on from her COVID-19 diagnosis, she still lives with the often-debilitating symptoms of post COVID-19 condition – commonly known as ‘long COVID’.
“At the time I seemed to be experiencing COVID much worse than others I knew…I had to isolate for a month and needed a trip to the emergency department with difficulty breathing, and I was fatigued to the point that I could only be awake a couple of hours a day,” Debrah recalls.
“Months after the infection I wasn’t improving…I just wasn’t bouncing back from it like you do with other illnesses.”
Debrah sought help from the Southern Adelaide Local Health Network’s (SALHN) Long COVID Clinic, where she was immensely grateful for their care and reassurance, despite few treatment options existing.
But even now, the fatigue and the ‘unpredictability’ of the condition continue to frustrate her.
“I’ll take the dog for a walk and be fine one day, then do the exact same thing the next day and halfway through I’ll be sitting down because I can’t breathe,” Debrah says.
“Or the ‘brain fog’ is so bad I’ll turn around in my own neighbourhood and can’t remember how I got there.”
Previously independent, sporty and working full-time, Debrah says long COVID has changed all that:
“It’s impacted absolutely everything.”
“At home I’ve needed so much more help from my husband; I play a lot of sports and I haven’t been able to engage with them in the way I usually would; and I haven’t been able to return to full-time work even now.”
But in hopeful news, patients like Debrah in Southern Adelaide living with debilitating long COVID will be able to trial a rehabilitation intervention program successful with stroke patients in the hope of improving their symptoms and quality of life.
With the help of a SALHN Enquiry Grant, Rehabilitation Consultant Dr Subbuh Luker will trial an existing intervention program called ‘Taking Charge’ on patients from SALHN’s Long COVID clinic who have confirmed or suspected long COVID.
The program, which has had past success with stroke patients, involves individual sessions with a trained allied health staff member, with changes in symptoms measured at set intervals for signs of improvement.
“Unlike traditional self-management programs that focus on symptom management, Taking Charge aims to shift focus away from the disease and symptoms enabling the individual to focus on their sense of purpose, personal identity and hopes for the future,” Dr Luker explains.
“There is a significant risk that individuals with long COVID will continue to experience debilitating symptoms and remain out of the workforce, so it’s imperative we focus our efforts on investigating interventions that may improve outcomes for this group of patients.”
This new research is welcome news to Debrah, who is contributing her unique patient perspective to the project as a consumer adviser.
“I’m really pleased that this research isn’t just focusing on the medical side of things but also on the psychosocial and lifestyle side, to hopefully help give the medical treatments the best chance of working,” Debrah says.
“Long COVID is still so misunderstood and there are such limited treatments available, so to me it’s a given than we need more research into it because we’re not going to find anything otherwise.
“I want so much for this to be treatable.”
It is estimated up to 10 per cent of people develop long COVID following COVID-19 infection, affecting millions globally and in Australia. Symptoms include fatigue, breathlessness and ‘brain fog’, often impacting on quality of life, everyday functioning and the ability to work. But there is little evidence available on how to best treat long COVID.
This project is one of 23 exciting new research projects to share in the $1 million SALHN Enquiry Grant Round, thanks to your generous support, and a collaboration between Flinders Foundation and The Hospital Research Foundation Group.
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