Amanda Canzurlo has a career as a singer with a busy touring schedule, performing under the name "Bloom".
But years ago, that would have been impossible.
After a bout of glandular fever when she was 16, she was bed-bound for about 10 weeks.
"All I knew is that my body ached all over, and just getting up to go to the toilet meant I needed to rest in bed for three hours or so after that," she said.
When Ms Canzurlo returned to school, the debilitating fatigue and exhaustion persisted. She struggled to study and had to pull out of her tertiary entrance exam subjects and put her university plans on hold.
"I was literally falling asleep in class because I just didn't have the stamina to get through the day," she said.
Ms Canzurlo lives with myalgic encephalomyelitis/chronic fatigue syndrome (ME-CFS), an illness that usually develops after an infection or virus.
An estimated 250,000 Australians live with the condition, according to Emerge Australia, a national charity that supports people with ME-CFS.
And as more people are diagnosed with long COVID, with some unable to work or live a normal life for months after getting the virus, advocates say the number of people needing support for post-viral illness is set to skyrocket.
The illness like a 'living death'
About 75 per cent of ME-CFS patients are women and 25 per cent have cases so severe, they are housebound or bedbound, said Richard Schloeffel, the medical adviser for Emerge Australia.
He said misconceptions and myths among both doctors and patients were hampering people from getting an accurate diagnosis and treatment.
"This is not a mental disorder or a psychosomatic disorder. This is a biological, pathological change in your body," he said.
The main symptom of ME-CFS is debilitating fatigue so severe it cannot be improved with sleep and makes people unable to function at their pre-illness level for at least six months.
People with the illness can also experience other symptoms like cognitive impairment, gut issues, low blood pressure and significant fatigue after exercise.
"ME-CFS has been called, by people who have got it severely, like a living death," said Anne Wilson, the chief executive of Emerge Australia.
"At the severe end, with a post-viral illness like ME-CFS, you can't get out of bed.
"There's grief and loss for the life you had, let alone navigating how to access supports like the NDIS."
Recent research from Deakin University estimates between 40,000-325,000 might develop long COVID, which can have similar symptoms to ME-CFS.
"That's an enormous number of people … people's workplaces, people's livelihoods, they're going to be severely impacted by this illness," Dr Schloeffel said.
Better treatment guidelines needed for GPs
ME-CFS advocates say Australia is lagging behind the rest of the world in evidence-based guidelines for GPs to accurately diagnose patients with post-viral illnesses.
They say many patients have their symptoms dismissed or, worse, given outdated advice to exercise more.
"A patient's blood work can come back normal but the physical symptoms are real," Ms Wilson said.
"But there is no health pathway or up-to-date treatment guidelines that GPs can follow to help people with ME-CFS."
Ms Canzurlo spent more than a decade seeing different health professionals, trying to get help for her symptoms.
"I feel like I'd go and get help from a doctor or a naturopath, and it would help for a little while. And then … I'd be back searching for help either six months or a year later," she said.
"There wasn't a lot of knowledge around [ME-CFS]. Some professionals would tell me it was in my head. Some would say, 'Yeah, you've got this thing, there's no cure'. They couldn't really help me."
Ms Canzurlo manages her condition through lifestyle changes like making sure she gets adequate rest, but it was a 20-year journey to figure out what worked.
While some people with the condition can manage and reduce their symptoms, there is no accepted "cure" for ME-CFS and some patients may never find relief.
"I would say to those that haven't experienced it, that is not all in our head," Ms Canzurlo said.
"Don't think that your friend's lazy or making excuses or anything like that — it's a real thing that they're feeling."
Calls for more research and more support
Emerge Australia says more funding is needed to educate GPs on ME-CFS and long COVID, develop an optimal care pathway and conduct more research into post-viral illnesses.
They also want policy change to expand access to telehealth services and improve access to government support for people with post-viral diseases.
With more money being allocated to research and clinics for long COVID, new insights into post-viral syndromes are emerging.
But ME-CFS advocates do not want their patients to be left behind.
People with ME-CFS cannot access long COVID clinics and there is still a lot to learn about the condition, advocates say.
"The voices of the 250,000 people with this illness need to be heard," Ms Wilson said.
