Australian Woman Dies in Malaysia After Seeking Unproven Chronic Illness Treatments

When Hannah McElhinney thinks about her cousin Lauren, a few things stand out.

She remembers spending her childhood idolising her cousin, whose walls were covered in pictures of boy bands and whose nails were always painted to perfection.

"She was what many people look up to in an older family member," Hannah tells triple j hack.

But she also remembers Lauren being tired.

Hannah's family always thought Lauren was just a sleepy teenager, but as she aged something shifted.

Lauren was diagnosed with chronic fatigue syndrome (CFS) around the age of 16, and fibromyalgia a year or so later.

Both conditions can cause extreme tiredness, body aches and brain fog, and are difficult to diagnose and treat.

Finding a controversial diagnosis

Hannah says as Lauren aged, she began to search for answers outside of traditional medicine.

In her early 30s, she says her cousin became convinced she had "chronic Lyme disease".

"Around 2018 is when she found that diagnosis," Hannah says.

"And in between then and those early diagnoses, she looked into a range of other conditions … those hard-to-define, mysterious chronic conditions that are invisible in their symptoms, or their symptoms might be inconsistent or change."

Lyme disease is a tick-borne infection caused by the bacteria in the Borrelia burgdorferi sensu lato group.

The disease is commonly found in parts of Asia, the US and UK and is spread through tick bites.

Australian health authorities say there is no evidence that the bacteria that causes Lyme disease is present in Australian ticks.

Chronic Lyme disease (CLD) is not an officially recognised condition, and is sometimes used by those reporting non-specific symptoms, such as fatigue or muscle pain.

Hannah says her cousin became convinced she had CLD and tried a range of dangerous alternative treatments to treat her symptoms.

"The first thing was veterinary Ivermectin," Hannah said.

Ivermectin is a medicine that has effects against parasites, mites and worms and can be used in both animals and humans.

It surged in popularity during the COVID pandemic amid unproven claims it could cure the virus, as well as other conditions.

Medical experts have repeatedly warned against misusing the drug.

Hannah says Lauren also tried drinking chlorine dioxide, commonly used as a bleach, as well as "bee sting therapy" to treat her symptoms.

Lauren also tried the controversial "Gerson therapy", popularised by Australian wellness scammer Belle Gibson, who claimed she was using it to treat cancer.

The overseas therapy that killed Lauren

Hannah only discovered the extent of Lauren's dive into alternative therapies after her cousin died while seeking treatment in Malaysia, after leaving to go there in October 2022.

She never returned.

The family did not know Lauren had left Australia until they received a message from a stranger on Facebook.

"This man who my aunty didn't know basically said, 'Lauren is in a large hospital in Johor Bahru, and she's unconscious," Hannah said.

Lauren died while undergoing hyperthermia, a treatment used to help damage or kill cancer cells by heating body tissue to high temperatures.

Following Lauren's death, Hannah spent years looking into what led her cousin to the point of deciding to take such drastic and dangerous action.

She joined the same social media groups her cousin had been a part of and spoke to other people living with chronic conditions.

Hannah believes her cousin was sucked into a social media "wormhole" as she tried to find answers for her condition.

"Lauren didn't just wake up one day and think, 'I'm going to go and have drastic alternative medical treatment.' She'd been making her way on this path for a long time.

"I actually found that for everything she did, there was a truth at the beginning of it, and there was a reason that she did it.

"While a lot of it was based on misinformation, her logical steps were ones that I think so many people would take, especially if you're experiencing chronic pain or mysterious illnesses."

Lauren 'let down' by healthcare system

Hannah says Lauren's mother was the only person in their family who knew the full extent of alternative treatments she had been trying.

Hannah says her aunt would take Lauren to doctors, seeking help to explain the risks of the treatments she was undergoing, but was often left disappointed.

"She desperately wanted someone from the medical field to intervene and engage, but so often, and understandably, they feared getting entangled in alternative medicine.

"In particular, one doctor sort of rolled their eyes at my aunty over Lauren's head while she was talking about some of the treatments that she was looking at.

Hannah says the healthcare system is letting down Lauren and other people living with mysterious chronic conditions.

"This is a systemic issue, certainly not one with individual practitioners," Hannah says

"From a systemic point of view, I think there is a lack of information, a lack of understanding about these conditions."

The peak medical body for GPs in Australia has long recommended practitioners validate patient concerns when they present with medically unexplained symptoms.

In sharing Lauren's story in her book, Wormhole, Hannah hopes to change how we talk about people who fall into "wormholes" while looking for answers.