Surge in Victorians seeking treatment for debilitating ‘long COVID’

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Hundreds of Victorians are seeking treatment for strange and debilitating symptoms lingering many months after their COVID-19 diagnosis, including some whose ailments are so severe they are struggling to return to work.

Head of respiratory medicine research at The Alfred hospital in Melbourne, Professor Anne Holland, said the hospital’s post-COVID follow-up clinic was supporting a rising number of people infected in the latest Delta outbreak, some of whom were having to cut back their working hours, or were finding it difficult to return to their studies.

Petra Theilhaber still has no sense of smell and taste more than a year after contracting COVID-19.Credit:Jason South

Many were young, otherwise healthy people, who had only minor bouts of the disease, but were reporting symptoms including brain fog, extreme fatigue, chronic pain, shortness of breath, and palpitations more than two months after infection.

Others are experiencing tinnitus (a ringing or buzzing noise in the ears) or recurring pins and needles (a sensation of uncomfortable tingling or prickling), despite having no history of the conditions.

“One of the things that has been much more apparent this year with the Delta outbreak is that symptoms around difficulties with memory and concentration have been very prevalent,” Professor Holland said.

“There are other very distressing symptoms as well, which seem to be quite particular to COVID, like loss of smell or taste. It is having a real impact on the way people live their lives.”

The last thing Petra Theilhaber remembers smelling was ammonia, shortly after she was diagnosed with coronavirus.

“All I could smell was ammonia and I said, ‘where is this coming from? Did I clean the oven? No, I didn’t’. The smell kept following me around and I thought this is just so strange,” the Melbourne mother of two said. The next day, her sense of taste and smell completely disappeared.

It has been more than 15 months since she contracted the virus, and she is still unable to taste and smell.

Ms Theilhaber is one of thousands of people world-wide who have been left with persistent symptoms after contracting COVID-19 in a phenomenon commonly know as “long COVID”.

In September, The Alfred’s post-COVID clinic began monitoring another 400 patients, who were still experiencing symptoms of the disease after testing positive to the virus in July.

Many were young people who were infected before being able to be vaccinated. Professor Holland said while about a third might make a full recovery without treatment, the others might require ongoing support from the clinic.

The demand for post-coronavirus care is expected to soar in Victoria in the coming months as the state continues to report the highest numbers of infections in the country.

The number of people who have the post viral condition in Victoria is difficult to quantify because many receive follow-up care through their general practitioners.

Professor Holland said there was an urgent need for more services to help people cope with brain fog, as well as mental health support for people with long COVID, who frequently experienced anxiety, depression and signs of post-traumatic stress.

“It’s not yet clear how many of those people are going to need ongoing cognitive rehabilitation, but the need now is very high,” the professor of physiotherapy said.

Ms Theilhaber’s taste returned temporarily recently while she was eating a vegetarian burger with raw onions. The taste of the onions was so intense, it made her eyes water.

In the days following, she would have sporadic moments where she could taste raw onions.

“I was eating cashew nuts and all I could taste was raw onion,” the 55-year-old said.

In Australia, up to 30 per cent of seriously ill COVID-19 patients have reported at least one symptom persisting after six months.

But doctors are increasingly seeing higher numbers of young people, who despite not being severely ill with the virus, struggle to shake off waves of debilitating symptoms.

Research suggests the phenomenon is more common in women, even though men are typically hit harder by acute COVID‑19.

A recent study found being fully vaccinated against COVID-19 not only cuts the risk of catching the disease, but also of an infection turning into long COVID.Credit:Penny Stephens

Australian researchers tracking patient recovery are warning that the long-term effects of COVID-19 pose a more severe public health threat than the pandemic’s death toll, foreshadowing a significant surge of people battling lasting illnesses and disabilities.

Carol Hodgson, from Monash University’s School of Public Health, led an Australian-first study of 200 people who were admitted to intensive-care wards with COVID-19.

It found 70 per cent of respondents reported suffering persistent symptoms six months after they were hospitalised.

Research behind the exact mechanisms that trigger long COVID is still emerging, but Professor Hodgson said the virus caused systemic inflammation that could affect a person’s organs and muscles.

“A lot of people think of coronavirus as just a respiratory disease, but it affects almost every organ in the body,” Professor Hodgson said.

She is now researching whether the Delta variant could pose more dire health outcomes long term.

“We are seeing in hospitals that the Delta is affecting younger and more fit people and the patients look like they’re more severely unwell, and we are wondering whether that’s going to translate into worse longer-term outcomes,” she said.

For Ms Theilhaber, there are other unusual symptoms, too. She forgets her phone number frequently and has trouble remembering simple things like how to turn on the Thermomix she had used for years. “You feel like you are losing your marbles,” she said.

At the Royal Melbourne Hospital, respiratory physician Associate Professor Lou Irving is also running a post-COVID clinic, where specialist doctors have follow-up appointments with patients who suffer ongoing symptoms.

Last year, the clinic was monitoring about 120 patients, but roughly half have been discharged from the program. They were mostly young, with an average age of about 38.

“Our model of care was to listen to the patients’ symptoms and validate those symptoms because this experience can be very distressing for people,” Associate Professor Irving said.

Worryingly, this year, Associate Professor Irving is treating an increasing number of people infected with Delta who have lasting inflammation of their lungs and require ongoing treatment with steroids.

“It’s too early to say why this is happening, we don’t know if whether this is just a different patient group or the effects might be different with Delta,” he said. “We are keeping an open mind.”

While evidence is still emerging about long COVID, a recent study found being fully vaccinated against COVID-19 not only cuts the risk of catching the disease, but also of an infection turning into long COVID.

“Long COVID can be a nasty condition, but there is a reasonable hypothesis you are unlikely to get it if you’re vaccinated,” Professor Irving said.

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