Monday, April 22, 2024

Fighting an invisible illness: the curse of Long Covid

Note that she fell ill AFTER being vaccinated


The first time I got Covid it landed me in hospital on Christmas Day. It was 2022 and my husband dropped me off outside Emergency, our two worried kids watching from the car. I didn’t want to leave them but I had no choice: I’d been ­experiencing wave after wave of horrible nausea, and I had never felt my heart beat so fast. I felt on the verge of collapse. Being Covid positive, I was told by hospital staff to wait on a bench outside and that’s where I sat, miserably, until a nurse came to see me.

“So you have Covid,” she said. “Well, what did you come here for? Do you think I have a magic pill that’s going to make you feel better?” The rational, fact-finding journalist part of my brain knew what she said was correct – there wasn’t a quick fix, and being Christmas the ­hospital was operating with skeleton staff who were overworked and exhausted at this point in the pandemic. But I had never felt so sick in my life, and I simply did not know what else to do. Surely there was someone who could help me?

What I didn’t realise in that moment was that, 16 months later, I would still be struggling with this same feeling of utter desperation, hopelessness and fear. Because since the acute phase of the infection ended, I have been ­struggling with the mysterious and debilitating condition known as Long Covid.

I am not alone: it is estimated that one in 10 people who contract Covid develop Long Covid, which is defined in Australia as being symptomatic three months after the original infection. According to research publishedlast year, as many as 65 million people have Long Covid worldwide, with numbers ­increasing with each new wave of the viral ­infection. In Australia, there is no national registry keeping tabs on the number of cases but a recent federal parliamentary inquiry into Long Covid heard there could be anywhere between 200,000 and two million sufferers.

What is clear from data collected globally since the pandemic began is that Long Covid affects more women than men, especially women in their thirties and forties. (Being a 45-year-old woman, I am a fairly typical case.) As a patient, and as a journalist, I wanted to understand why Long Covid remains largely a mystery, even though scientists and physicians have had more than four years to get to grips with it. The first key question, for me: why are women getting Long Covid more than men?

“I wish I could tell you but we just don’t know yet,” says Professor Steven Faux, who ­co-founded one of the first Long Covid clinics in Australia, at St Vincent’s Hospital in Sydney. “There are a handful of reasons [being explored]. One is psychosocial, that we put women in harm’s way when it comes to caring for people because most nurses are women. “

There is another issue, he says. “A group of researchers in the US said, ‘We think it is happening in that period because they’re perimenopausal and no one is looking at that. Is that possible?’”

But, Faux says, the most fascinating theory is US immunologist Professor Akiko Iwasaki’s research around the hormonal response – that the female’s immune system is more aggressive than the male’s, and turns on faster and stronger to protect any potential unborn child. But it then exhausts itself and it can’t keep fighting against the virus and stop it from developing reservoirs in different organs.

Faux sees more women than men at St Vincent’s Long Covid clinic (55 per cent female patients compared with 45 per cent male). The most common age group is 31-45 years, followed by 46-60 years. This echoes the experience of other clinics in Australia and overseas and was also noted as a concern by the parliamentary committee inquiry into Long Covid. “There’s just a lot more women,” Faux says.

The reason I am talking to Faux in his tiny ­office at St Vincent’s between clinic appointments on a Thursday afternoon is not only ­because is he one of the leading Long Covid experts in Australia and I selfishly want to pick his brain, but because he is the first person in this country to have written a comprehensive guide to the illness. To be published in May, Long Covid: Expert Advice, from Diagnosis to Treatment and Recovery is aimed at patients, people just like me, who have been struggling to get better. It also advocates for us. And it does so in a particularly empathetic way.

“If you are living with Long Covid, we know that in your own ways you try to keep going, try to be the person you were, while battling the fear that you will never be the same,” Faux writes early on, setting the tone. “This book is an attempt to say to all of you: we see you.”

Those few sentences in the book encapsulate my experiences in a way that no other doctor has been able to. It’s comforting to simply read Faux’s acknowledgment of the awful symptoms – the erratic heartbeat, the exhaustion, the brain fog, the doctors’ ­appointments, the specialists’ appointments, juggling work, juggling children and the heavy weight of waking up every morning and not feeling any better.

“One of the things about Long Covid is that it’s a largely invisible illness,” Faux writes. “When you have it, you don’t necessarily look any different. It is not like you’ve lost a limb or have a cast on your harm. Fatigue or cognitive impairment is often subjective; it’s hard to show people you are fatigued because the only way to do that is to complain about the symptom.”

Faux is the Director of Pain Medicine at St Vincent’s, and previously spent 22 years as the director of rehabilitation. He has spent almost 30 years helping people ­recover from injury and illness. He and his ­colleagues recognised early on in the ­pandemic that there was a need to plan beyond the acute infection stage. And after working on the front line in the Covid wards for months, he saw first-hand what was coming. “What I knew of previous pandemics, and the effects of viral illnesses such as HIV and polio, was that the pandemic was about to ­deliver thousands of people who would be ­damaged by this infection and who would ­require rehabilitation,” he writes.

His unit soon started getting referrals for Covid patients who still had symptoms after three months. They called themselves “long haulers” on social media and were reporting breathlessness, coughing and exhaustion.

“We initially thought it was because the virus was destroying their lungs and they needed pulmonary rehab – but then a lot of the people we were ­seeing couldn’t go back to work because they couldn’t concentrate,” Faux tells me.

“I had colleagues emailing me saying, ‘Are you using brain injury rehab for these people?’ and it was then I ­realised that if we didn’t do something proactively, we were going to end up with an army of people who were disabled for some time.”

More than 200 different symptoms are now ascribed to Long Covid. According to a 2021 review quoted by Faux in his book, the most common is fatigue (45.1 per cent), followed by breathlessness, then insomnia, difficulty waking, anxiety, depression, brain fog, muscle pain, palpitations, headaches and a loss of taste and smell. But it can be hard to pin down. “People with Long Covid often say they don’t feel themselves, or are unable to get on with things as they used to, but many can’t really articulate what they feel,” he writes. “At the St Vincent’s clinic I’ve seen people lose their jobs as a result of Long Covid. I’ve seen it place stress on relationships and cause untold anxiety.”

Faux estimates there could be as many as one million Australians living with Long Covid, given that around one in ten people who get Covid develop Long Covid and more than 11 million Australians are thought to have contracted Covid since the pandemic began. “This figure would place Long Covid high on the list of the most significant medical conditions ­affecting the Australian population,” he points out. “Compare this with type 2 diabetes at 1.3 million, asthma at 2.7 million, heart disease or stroke at 1.2 million and cancer at 1 million.”

I managed to avoid Covid for the first two years of the pandemic, and I was beginning to think I was one of the lucky ones until I finally tested positive. This, of course, was well after the peak of the pandemic, after lockdowns, and after almost every Australian had been vaccinated. By then, we had certainly heard of Long Covid. The Weekend Australian Magazine had reported on the condition back in 2020 – a growing army of Covid “long-haulers”, many of whom had only a mild case of Covid-19, ­describing “a medley of lasting symptoms”.

When I fell ill, three days after my son tested positive in December 2022, I wasn’t too worried. I was fully vaccinated. The symptoms were ­initially mild: I had a temperature for a few days, a slight cough and felt generally unwell. But the symptoms dramatically escalated one evening when I was cooking dinner for my ­family. A wave of nausea and dizziness hit, my heart started beating fast and erratically and I thought I was going to faint. I immediately stopped what I was doing and lay down on the couch, waiting for it to pass. It didn’t.

During my first hospital visit on Christmas Day, they checked my heart and found nothing wrong, then hooked me up to a bag of IV fluids. I overheard the doctor ask a nurse whether I was eligible for antiviral drugs. “No, she’s too young,” came the reply. I was discharged a few hours later as there was nothing more they could do. I was back in hospital on New Year’s Eve with the same frightening symptoms. This time I underwent exhaustive tests and spent a night in the Covid ward before being discharged. Two weeks later, I finally tested negative to Covid – though my symptoms remained.

“They will lift,” a close friend reassuringly messaged me. But even as time went by, there was no easing of the symptoms. The godawful nausea meant I had no appetite and lost five kilos, and I couldn’t do anything physical without feeling dizzy. My husband had to take care of me and keep the kids occupied during a month of school holidays. Worst of all, my heart was behaving very strangely. All of a ­sudden I would feel it beating as if it would leap out of my chest, then I would get this horrible jittery feeling like when you’ve had too much coffee. Sometimes this would last for days.

I attempted to go back to my job as a journalist for The Australian’s WISH magazine in the middle of January 2023. I was working from my parents’ house – they were helping look after my children. One day I’d been working for about two hours when another wave of nausea and dizziness hit. I remember crying in despair in front of my husband and kids, frightened that this illness would rob me of my career.

Then came the dreaded “brain fog” reported by many Long Covid sufferers: I kept forgetting words and confusing things. The words and memories were there, I just couldn’t access them. It took away my confidence to write – a key part of my job – as well as my ability to function day-to-day as a mother and wife with school-age children.

Many studies have found that Long Covid affects the brain, and it’s a key part of the rehabilitation program at the St Vincent’s clinic – even though Faux admits the medical profession is at a loss to explain what causes the fog. “It’s unclear whether the effects on the brain are due to the persistence of the virus or to the immune system’s response, but brain ­imaging studies have shown that the parts of the brain involved include the orbitofrontal areas (above the eyes) close to where the olfactory (smelling) nerves enter the brain, and near some of the areas of the memory centres (the hippocampus and limbic systems),” he writes. “There is also evidence of thinning of the brain’s grey matter in those with Long Covid who have brain fog.”

The other debilitating symptom Faux sees that has also changed my life is post-exercise malaise. It means you can’t tolerate any type of exercise, and your body tells you afterwards – not during – with a swift return of symptoms. We’re not talking about the ­serious exertion of running or ­lifting weights in the gym; it can be triggered by the expending of ­energy in almost any way. Carrying too many groceries one evening meant I woke up the next day to find my nausea had returned powerfully, and I found getting out of bed incredibly difficult. The day before, I’d felt fine.

As I grew to understand, people living with Long Covid don’t have a linear recovery. You can have a good day, or even have a good week – and then you can overdo it physically, without realising, and be back to square one. For me, this was when the fear crept in and I found ­myself panicking that I might never recover.

“Living with uncertainty is one of the big ­issues for Long Covid,” explains Faux. “We ­always advise people with Long Covid a bit like we approach cancer rehabilitation – if you’re having a good day, enjoy it and don’t expect it to be the same tomorrow. And if you are having a shit day, then ride it out and maybe tomorrow will be completely different.”

While I was undergoing a series of tests last year to find out why my heart was beating erratically, a doctor helpfully told me that Long Covid is a post-viral syndrome much like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and the sheer volume of cases mean the symptoms cannot be dismissed as psychosomatic. “One of the things that people were initially saying with Long Covid is that these people are histrionic, they are putting it on,” Faux says. “But it became clear to me when we opened the clinic and talked to the first patients that they were not.

“The patients we see can’t work and they want to work. They need money and they have to put bread on the table. They don’t have a ­history of chronic pain or diagnosable illnesses. These are people with very little to gain by being sick.”

There is a six- to nine-month waiting list to get into the St Vincent’s Long Covid clinic. Faux and Associate Professor Anthony Byrne, a respiratory physician, set up the team that includes nurses, physiotherapists, a sleep specialist, a neurological rehabilitation expert and a psychologist. Each patient who is referred by their GP gets an assessment and a tailored rehabilitation program. It’s a slow process, but it does work. “If patients are identified early and they get a psychologist and a physio, or a physio and ­occupational therapist, whatever they need, and they start treatment early, the evidence from overseas is that they recover faster,” ­explains Faux. “And the evidence from our ­clinic is that there is a substantial return to work at six months following the commencement of rehabilitation.”

Last April, a federal parliamentary committee made nine recommendations following its inquiry into Long Covid. Among them was that the government should partner with state health departments to develop and fund more multidisciplinary Long Covid clinics. Yet when Health Minister Mark Butler released the federal government’s response to the inquiry, this was not one of the recommendations it supported. In the same month, the government committed $50 million of funding for research into Long Covid and established a national database on the disease. In fact, despite the demand for Long Covid clinics and the committee’s recommendations, governments appears to be withdrawing their support for them. In an RMIT study published last October co-lead author Dr Shiqi Luo stated: “We have insufficient Long Covid clinics to meet the demand”. An ABC investigation last December found five of the country’s 23 clinics have either been scaled back or closed.

Unlike me, Julie Lamrock contracted Covid early in the pandemic, in 2019, when a passenger she collected in her shuttle bus from the Overseas Passenger Terminal disembarked from the Ruby Princess cruise ship.When The Weekend Australian Magazine reported on Covid “long-haulers” in 2020, Julie was still ­experiencing pain, fatigue and brain fog. Her symptoms have never abated. Today, she ­describes her now four-year battle with Long Covid as a “living nightmare”. “Only last year did I start to go out again,” she says. “but the pain is always there. The fatigue is always there. I actually go to sleep in pain and I wake up in pain … and I’m living this every day.”

She says her treatment includes visits to a pain specialist and a pain psychiatrist, but after Nepean Hospital ceased its Covid-19 follow-up service she was no longer being treated as any part of a cohesive Long Covid treatment plan. “There’s nothing happening. Why haven’t I been told to go and see a [particular specialist] doctor? Why isn’t there a system where every doctor can turn around and say, ‘Well, here’s a number you can call and yes, here’s a referral to this clinic, get this done, get that done’?”

I was referred to a Long Covid clinic by my cardiologist last April. I received a call in June asking me what I needed help with; I told them. I didn’t hear anything back until October last year when I received another call saying the clinic was moving online and Long Covid case management was going back to GPs. I have since learned that what was once my Long Covid clinic is now an eight-week online education program and a support group.

When, in writing this article, I asked Health Minister Mark Butler about the future of Long Covid clinics, he did not directly respond, noting only the need for “multidisciplinary team-based healthcare for people with chronic and complex conditions like Long Covid.” The Department of Health and Aged Care released a plan in February this year addressing Long Covid, now referred to in government circles as PASC (Post-Acute Sequelae of COVID-19). There is no mention of Long Covid clinics. “States and territories decide the mix of the ­services and functions delivered in their jurisdiction … some have used funding to establish clinics for the management of people with PASC,” the plan states. “People with PASC will be able to benefit from the Government’s … commitment” to “expand general practices”.

Faux thinks this approach is flawed, and Long Covid patient care should be done in multidisciplinary rehab clinics because it’s not easy to treat. “The GPs are doing their best, but there’s not enough GPs and it’s very complicated because you’ve got to rule out everything else first,” he says.

People are not going to stop getting Covid and, in turn, Long Covid. “In January of this year, 100,000 positive cases were registered in the country. 100,000 people got Covid. That means about 10,000 people got Long Covid,” Faux tells me. “And every month there’ll be another 10,000. There’s lower vigilance with respect to Covid vaccinations and so we expect that people will get it a little bit more. There’s been no decrease in demand at the clinic.”

Faux quotes research in his book that shows 91 per cent of Long Covid sufferers have improvement in symptoms within 12 months; I was also told this by my cardiologist, who urged me just to hang on, as it was most likely I would get better within a year. And I did. I remember cycling with my family to a pool in February this year and feeling totally fine – fit, even. I had also gone back to reformer pilates. “Finally, I’m properly myself again,” I said to my husband.

But three days later, I tested positive for Covid. This time I was prepared.

After multiple conversations with my kind GP, I found out that even with Long Covid I wasn’t eligible for the antiviral drug Paxlovid as I was too young and was not severely immunocompromised. But I could get a course of antivirals privately for $1200.

It was an extraordinary amount of money, but I was willing to pay it in order to avoid a repeat of what I’d been through before. I dispatched my husband to get the antivirals that night; within two days I’d tested negative to Covid and my symptoms were ­almost gone. I was due to finish the five-day ­antiviral course on a Sunday, and I was already planning to go back to work on the Monday. But as soon as I finished the antivirals, my Long Covid symptoms came back: the crippling ­nausea, the irregular heartbeat, the exhaustion. I started to panic. How could I be back here again?

Five weeks later, I’m sitting in Faux’s ­office. “The statistics say you will get better,” he ­kindly reassures me. I tell him how I’m still struggling with nausea, fatigue and post-exercise malaise. I’ve stopped all exercise and I am back mostly working from home. “It’s going to be slow, and that will be very frustrating – but you have to try and look after ­yourself in that time,” he says. The empathy and understanding he shows me during our hour-long interview is also apparent in every single chapter in his book. Faux not only truly sees me and all people living with Long Covid, he has compiled a comprehensive management plan to help. “Your road to recovery may be a long one, unfortunately, but you are not alone and you are already one step ­closer to your destination,” he writes.

As for the future, Faux is full of hope. He says there is a lot of research being done around the world on the condition, from examination of its causes to trials of drugs to treat it. “It is already better now than it was a year ago, and we’re optimistic that this trajectory will continue,” he notes. “The more we know, the better the outcomes for people with Long Covid will be.”




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