ME/CFS sufferer Karli Moulston reveals struggle with ‘mysterious’ illness

A Gold Coast teacher has revealed how she suffers constant pain and fatigue because of a “mysterious” illness that bears remarkable similarities to long Covid.

A Gold Coast teacher is in constant pain and fatigued because of a “mysterious” illness that bears remarkable similarities to long Covid.

Emerald Lakes woman Karli Moulston says she is virtually housebound as a result of contracting ME/CFS (Chronic Fatigue Syndrome).

Ms Moulston, who was previously a yoga teacher and fitness enthusiast, said the condition – which surfaced after she picked up a virus – had turned her lifestyle “on its head”.

“I was Sporty Spice”, she said. “I taught a lot of yoga classes.

“... I would go so far as to say I felt like an athlete. I was really strong, I was really fit, I was a powerhouse.

“I was teaching in the Northern Territory and I got a virus. And that is what took me out.

“I felt like I was dying. I had a flu. I couldn’t move. I didn’t know what was wrong with me.”

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Ms Moulston, who returned to the Gold Coast after contracting the illness, says she rarely leaves her home.

“I can’t get through the day without sleeping. Two o’clock is like my witching hour, and I crash. I’ll sleep until about four, but I can’t really do much thinking or talking or anything until about six o’clock. So basically the whole afternoon, I’m cactus.

“It’s very debilitating.

“... I have brain fog, I have difficulty finding my words, my memory is terrible. And that’s all affected by the ME.”

Ms Moulston said that even among the medical community there were misconceptions about her illness, saying that on occasion she had felt “gaslighted” and had left some doctors’ surgeries in tears after struggling to get help.

However, pioneering research by Professor Sonya Marshall-Gradisnik from the Menzies Health Institute at Griffith University is helping to change that.

Professor Marshall-Gradisnik is working to develop testing for ME/CFS and more effective treatments.

She is now also studying long Covid and possible links with both diseases.

“We have identified a number of receptors (that) respond to threats like viruses, bacteria, surgery, trauma,” she said.

“Those receptors don’t function correctly (in ME/CFS patients).

“They’re on every cell type of the body. They’re responsible for bringing calcium inside cells in the body.”

Professor Marshall-Gradisnik said she was working on the hypothesis that the same receptors might also be dysfunctional in long Covid patients.

“Between 70 and 75 per cent of ME patients note that they develop ME following a viral infection,” she said.

“So when you take the instance of Covid, Covid-19’s obviously a virus and therefore we’re looking at whether the receptors in long Covid patients have the same dysfunction as in ME/CFS patients.”

Professor Marshall-Gradisnik said she hoped her findings would help create a greater understanding of the problems faced by ME/CFS sufferers.

“What long Covid patients have been experiencing in the last 18 months is just the tip of the iceberg in terms of what ME/CFS patients have experienced for some decades,” she said.

“Any light that long Covid can shine on the trials and difficulties of another illness can only be good for both types of illnesses.”

Ms Moulston, who was speaking ahead of International Awareness Day for ME/CFS on Thursday, said that would be a welcome development.

“There was this whole other process I’ve had to go through, to jump through all these hoops, to basically prove that I have a total permanent disability,” she said.

“It’s hard because looking at me, I look fairly well. But my day is a struggle. It’s hard to explain.”

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