Fighting Long Covid with compassion

Most of us know someone who’s been struck by Long Covid, someone who’s “never been the same” since they contracted the virus. For the legions of sufferers grappling with this largely invisible illness, Professor Steven Faux has three words which will give them comfort: “We see you.”

Professor Faux, one of Australia’s leading experts on the treatment of Long Covid, has recently published a comprehensive guide to dealing with the illness. Long Covid: Expert Advice, from Diagnosis to Treatment and Recovery, the first book of its kind in Australia, delivers practical advice and much-needed messages of hope and compassion for Long Covid sufferers and their loved ones.

It’s estimated that one in 10 people who contract Covid develop Long Covid, and there are now more than 200 different symptoms ascribed to the condition. Some of the more common ones include fatigue, breathlessness, and exercise intolerance. Sufferers can also experience brain fog and sleep problems, and they usually have a cluster of symptoms rather than just one.

Faux is clear that the symptoms of Long Covid can be debilitating and admits that “there are no amazingly great treatments”. But although there is no cure – at least for now – rehabilitation medicine, which aims to enhance and restore function and quality of life to people with physical impairments or disability, can be used to slowly improve symptoms and return Long Covid sufferers to normal functioning.

Faux is the co-founder of the Long Covid clinic at Sydney’s St Vincent’s Hospital. The clinic’s team comprises nurses, physiotherapists, a sleep specialist, a neurological rehabilitation expert and a psychologist, and each patient receives a rehabilitation plan tailored to their needs. “Our focus is on helping people make the best of what they’re going through,” says Faux.

Professor Faux is also the Hospital’s Director of Pain Medicine and before that, he spent 22 years as its director of Rehabilitation Medicine. The seeds for his book were sown at the very start of the pandemic.

As early as March 2020, he realised that although the response to acute infection was excellent, the virus – like every other disease epidemic he had treated, including HIV and polio – was likely to have a chronic phase and there was a need to prepare for it. Faux co-wrote an article in July 2020 in The Medical Journal of Australia, warning of the need to plan for the aftermath of Covid’s acute phase, or risk leaving survivors struggling to rehabilitate.

Indeed, within three months of St Vincent’s opening its Long Covid clinic in 2022, it had a one-year waiting list. And with rehabilitation medicine being the only proven treatment for Long Covid, the clinic still has a six-nine month waiting list. Even then, it’s not a miracle cure. “Recovery is always slow, measured and paced and always takes months,” writes Faux.

Yet he is optimistic. At their Long Covid clinic, Faux and his colleagues are seeing people’s symptoms improve after six months of rehabilitation and respiratory treatments. “I find that those people who get onto a rehabilitation pathway start to be able to accept some of their limitations and get on with their lives,” he says. And with ongoing studies into other treatments, it’s likely that the next two years will lead to better research and information for people living with Long Covid.

As I read Long Covid, and again when I interviewed him, I was struck by Faux’s compassion and empathy. In the book, he encourages patients to find practitioners who will listen to them and be their ally, rather than assume they know better.

He acknowledges that living with Long Covid is filled with uncertainty, can be frustrating and can take a toll on mental health. He tells sufferers their fears are well founded and their concerns should be heard and understood by medical professionals.

And when we speak, Faux is keen to stress that people with Long Covid shouldn’t feel marginalised. “I’ve seen so many people in dire straits who are not believed, who are viewed with suspicion, who employers find difficult to deal with,” he says. “They don’t want to have chest pain or be incredibly fatigued or turn up to Emergency all the time. There’s no advantage for them.”

I’m curious about the origins of Faux’s compassion and patient-centred approach.

In part, he says, it’s a function of his area of practice. Rehabilitation medicine always takes a team approach, in contrast to the top-down style often adopted in other areas. “Rehabilitation medicine can often improve a patient’s situation but the patient has to want that improvement. So you really have to form a therapeutic alliance and make the patient part of the team.”

In addition, Faux’s family history is a significant influence. His mother was a Holocaust survivor and his father was in a labour camp on the Russian front. They came to Australia as refugees in the 1950s and Faux’s mother opened a coffee shop in Sydney. She employed others who, like her, were European refugees. “I think that’s what sensitised me to the plight of refugees,” says Faux.

Since 2013, Faux has been volunteering with an organisation called Supporting Asylum Seekers Sydney, SASS. Faux explains that he identifies with the desperation of many refugees to get a better life for themselves.

“There are so many people who are marginalised in Australia, people from one ethnicity not accepted by another, people who are ostracised because of their sexuality or gender,” he adds. “One of the things that drives me is that everyone is valuable and equal.” This goes a long way to explaining Faux’s approach to his Long Covid patients – and his readers.

Unfortunately, these sentiments don’t solve the conundrum facing many Long Covid sufferers: there’s quite a lot of evidence that the earlier sufferers start the rehabilitation process, the better the outcomes, but most Australian Long Covid clinics having waiting lists of longer than six months. So, aside from reading his book, what advice does Faux have for people living with Long Covid who are waiting to get into a clinic?

“If you’re not recovered by three months, I’d say go to the GP and ask for an early rehabilitation program. The Australian government has classified Long Covid as a chronic condition, which means that after three months, sufferers can ask their GP for a care plan which will allow them to have Medicare-subsidised consultations with an allied health specialist (such as a physiotherapist) up to five times in a year, as well as a psychologist up to 10 times in a year.

While Faux is optimistic that the situation for Long Covid sufferers will improve, he’s concerned about the numbers that keep getting Covid and therefore the numbers that will have long symptoms. He points out that in January, there were 100,000 reported cases of Covid in NSW, and at least in Sydney, there’s another wave of Covid right now.

“Every time there’s a wave, even though only one or two percent of people might get Long Covid symptoms, that can still be a couple of thousand.” It seems, then, that the waiting lists to get into Long Covid clinics aren’t going to ease anytime soon, making Faux’s book – which is essentially a compendium of answers to the questions his patients most commonly ask – an invaluable resource for sufferers and their carers.

Long Covid: Expert Advice, from Diagnosis to Treatment and Recovery is published by Murdoch Books and available now