CHANTEL Carroll was a gifted dancer with big dreams and a bright future ahead when she began to find it increasingly hard to focus and maintain her energy levels.
The scholarship-winning ballet dancer, then 13, was turning heads at the Australian Ballet, and honing her craft at the National College of Dance.
“She was involved in an intensive training program for pre-professional ballerinas,” Chantel’s mother, Michelle Carroll, said.
She had contracted glandular fever early in 2016. But after the initial illness had passed, she still suffered with stomach pain, high temperatures, and fatigue.
Doctors put her symptoms down to puberty, hormones and “anxiety issues.”
Chantel had some seizures, and spent her Christmas holidays bedridden. But a week after returning to school and dancing, she collapsed at home with extreme fatigue and muscular pain.
For the past two years, Mrs Carroll said Chantel’s life had been put on hold as she battled an illness that many doctors seemed reluctant to diagnose or quick to dismiss – myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS).
People with the condition, which affects their nervous system, often have flu-like symptoms after exercise and do not have enough energy for daily activities. But there is no definitive diagnosis, no cure and no agreed management plan. It can also be similar in nature to other chronic illnesses.
“Doctors would say she had depression,” Mrs Carroll said. “We had people saying it was all in her head. And while she has had some mental health care – it was not the whole picture. We knew it was more than that.”
The family began to explore alternative therapies, but nothing helped.
Nicole Skinner, the founder of an online support group for local ME/CFS sufferers, said a diagnostic test for the condition was desperately needed. More education was required to help medical professionals support those with the isolating and debilitating illness, which was not supported by the NDIS.
“It’s the invalidation you are constantly up against. You are told you are virtually well by your blood tests, but you are just so sick,” she said.
“We need funding for research to find a biomarker…
“People are desperate, and they are looking for answers in places that aren’t always safe… I have 140 people in my support group, just in the Newcastle area.”
Chantel is now receiving treatment from a private integrative doctor in Sydney, with a special interest in CFS, and a supportive local GP.
“We are confident that Chantel is on a road to recovery," Mrs Carroll said.
The family is sharing their story on May 12 – ME/CFS Awareness Day – to help people understand the illness.
Now 15, Chantel’s interaction with her friends is typically restricted to social media.
She has not been able to attend school.
“We had a birthday party for her last year with her old school friends, which was lovely, but she crashed for about a week afterwards,” Mrs Carroll said.
“But she said, ‘Mum, it was so worth it.’”
Chantel hoped to return to the stage one day soon.
Mrs Carroll said it was a difficult illness that a lot of GPs did not want to tackle.
She would like to see more research done to address the current knowledge gaps.
“We need to ensure that lives are not going down the tubes because no one knows what to do, and just keep spinning on the spot,” she said.
“There are a lot of people out there that have an invisible life that I have encountered on social media – when doctors, friends, and family don’t even believe in them.
“It is heartbreaking.”
Professor Tim Roberts, of the University of Newcastle, said their laboratory work in the past 30 years indicated the biological characteristic of CFS was similar to that seen when the body fights an infection.
“Our conclusion was that this was a chronic catabolic state,” he said.
“Recent work from Stanford University School of Medicine supports this by providing evidence that inflammation is a powerful driver of this mysterious condition.
“Their studies have linked chronic fatigue syndrome to variations in 17 immune-system signaling proteins, or cytokines, whose concentrations in the blood correlate with the disease's severity. The underlying cause of this inflammatory state is still unknown.”