More than five months after testing positive for COVID-19 for the first time, Byron Bay woman Mirabai Nicholson-McKellar still struggles with the simplest of tasks.
On the days when her symptoms are bad, going for a 20 minute drive can be too much to handle.
“It’s completely rendered me useless, I cannot function like a normal person,” she told Yahoo News Australia. “The simplest things, I can’t do anymore – it’s incredibly frustrating.”
After a nightmare battle with coronavirus which included trips to the emergency room, three positive tests and nearly 60 days in isolation, she still faces an uncertain future about when – if ever – her various symptoms will subside.
“It’s such a slow grind coming out of this. I have no trajectory, no guidelines about when or if I will be well again,” she said. “I go through days and weeks where I can’t even imagine being normal.”
On the bad days, if she tries to do too much, immense fatigue will settle in and she can be overcome with a feeling “like my skin is on fire”.
Arriving back in Australia from Germany on March 21, Ms Nicholson-McKellar now realises her first symptoms appeared around March 13. As she touched down in Brisbane, she told Border Force officials that she had no sense of smell or taste but was unable to get tested because she didn’t have a cough or a fever.
Nearing the end of her 14 days of self-quarantine upon returning home, the 35-year-old was eventually able to get a test which came back positive.
“At that moment it was very mild symptoms, I felt like I was recovering but I was put into two more weeks of quarantine,” she said. But that’s when her condition took a worrying turn for the worse.
“I just crashed. I had fever, aches and pains, sinus infection, severe headaches, gastrointestinal [issues], diarrhoea, nausea ... just so many symptoms and then I developed a shortness of breath, chest tightness and pain. Just weeks of weird, shifting and changing symptoms.”
Emergency room trip four days after being declared ‘virus free’
After going 72 hours without symptoms, she was declared virus free by NSW Health guidelines. She tentatively ventured out but still avoided close contact with friends and family. However four days later while sitting at her computer doing some work, she was hit with a sudden burst of severe chest pain.
“That was my first trip to the Emergency room,” Ms Nicholson-McKellar recalled.
While in hospital on April 28, she tested positive for COVID-19 for a second time. While a positive test is not necessarily active virus, “they treated me as if I was contagious,” she said. “I was told to quarantine again.”
Chest X-rays showed her lungs looked “foggy and abnormal” and she was sent home with Panadol.
Her case was referred to infectious disease specialists and two weeks later she went to Lismore Base Hospital where she was tested again – and still returned a positive result. Once again she was given an automatic directive to self-isolate.
“I’ve been in isolation for 60 days,” she thought. “I haven’t hugged anyone. I haven’t seen my family.”
Thankfully, extra attention saw her case escalated and when her recent swabs were analysed, she was deemed not contagious.
With the long-term effects of the virus becoming more clear, Queensland Chief Health Officer Dr Jeannette Young shared a video message Saturday warning that some patients don’t simply recover from COVID-19. In a video shared on social media, she explained that while coronavirus can be a “mild” disease, people aren’t fully recovered once they return a negative test.
“As we learn more about the virus, we're learning that for a reasonable number of people, they don't recover, they'll have long-term consequences from the disease,” she said.
“That’s because this virus doesn’t just affect the lungs, unlike flu this virus can affect every part of the body.” The long-term consequences of the virus can affect the heart, lungs, kidneys, blood vessels and the brain.
‘I was lucky because I had a positive test’
While post viral syndrome is well known in the medical community, patients like Ms Nicholson-McKellar have tested the limits of the healthcare response during the first few months of the coronavirus pandemic.
Thousands of patients are dealing with what appears to be a debilitating form of post viral exhaustion that shares characteristics with Myalgic Encephalomyelitis (ME), better known as Chronic Fatigue Syndrome (CFS).
The disease, which includes a hugely diverse range of symptoms, is notoriously difficult to assess and diagnose making it difficult for patients to get recognition, let alone effective treatment. As a result, the flood of coronavirus patients still experiencing devastating health effects months after being diagnosed have gathered in groups online where they share experiences, compare notes and vent their frustrations.
“Very early on, when I went downhill, I found this girl on Instagram talking about her story and she started a support group,” Ms Nicholson-McKellar recalled.
Soon there were so many people following along that they moved to a WhatsApp group which they soon outgrew and subsequently moved to an online discussion channel on Slack. On various social media platforms, self-described coronavirus long-haulers are gathering to compare their experience of ‘Long Covid’.
“Honestly having contact with those people in those days when I was alone and struggling to breathe, and struggling to cope ... I just would have thought I was crazy otherwise,” she said.
“Because the symptoms are just so weird, you would think you were mental – no other virus I’ve ever had has responded or reacted like this.”
With little therapeutic treatments to speak of, many in a similar situation have expressed frustration at their health predicament.
“I’ve heard a lot of people have been dismissed as having anxiety,” Ms Nicholson-McKellar told Yahoo News Australia. “I was lucky because I had a positive test so I wasn’t told it was all in my head, which I know a lot of people have.”
Coronavirus long-haulers still a puzzle of pandemic
For researchers and medical professionals who work in the chronic disease field, the fact that the novel coronavirus has sparked these long-term symptoms did not come as a surprise. But that doesn’t mean they know how to treat them.
“I don’t think anyone really knows what is happening in these patients at the moment,” says Professor Axel Kallies, an infectious disease expert at Melbourne’s Doherty Institute.
This week he was part of a team that published a paper which could shed light on the immune response of coronavirus patients with acute forms of the disease. The paper published in Nature Immunology, showed that T cells (which work to attack disease cells) can be impaired within just a few days, losing their function and becoming exhausted. A process which was thought to happen slowly and over long periods of time.
“It’s pretty clear that patients that experience severe symptoms have these blunted T cell responses, and T cell exhaustion,” Prof Kallies told Yahoo News Australia.
“And people who recover quickly and deal with the coronavirus infection efficiently, that is associated with an efficient T cell response where you don’t really have these features of immune exhaustion.”
However, whether that blunted T cell response is a factor in the long-term fatigue and health issues of so-called coronavirus long-haulers remains unclear, he said.
“But that is something we, and other people, want to look at. And this is only now becoming possible.”
Meanwhile researchers in the field of ME/CFS are hopeful the wave of long-haulers could help the medical field better understand the disease and its onset, according to Oved Amitay, Chief Executive Officer at the Solve ME/CFS Initiative in the United States.
“With the coronavirus long-haulers, if there’s any silver lining to this situation it’s the possibility that out of COVID-19 we’ll get a better understanding of ME/CFS, with the potential benefit for both communities,” he told Yahoo News Australia this month.
‘We hear you’: WHO meets with virus long-haulers
Due to their rapidly burgeoning numbers, coronavirus long-haulers are gaining increasing recognition from the medial community, including the head of the World Health Organisation.
“These patients want three things: recognition, rehab and research. Recognition of their disease, appropriate rehabilitation services, and more research to be done into the long-term effects of this new illness,” said the head of the WHO, Dr Tedros Ghebreyesus after his organisation met with a group of long-haulers last week.
We hear you. My colleagues will reach out to you. Thanks. https://t.co/sygDJpvP7t
— Tedros Adhanom Ghebreyesus (@DrTedros) August 22, 2020
For now, people like Ms Nicholson-McKellar remain a puzzle with an unknown number of pieces still missing.
“I’ve kind of given up in many ways in there being any kind of medical solution to my problem,” she said. “It seems like I’m always met with: ‘we just don’t know’.”
After getting what she thinks was the flu, she recently tested negative for COVID-19. “I was relieved to finally have a negative swab,” she said, however symptoms and bouts of fatigue persist.
“If I push too hard in a day, I get this weird ... my body gets really fatigued and it feels like my skin’s on fire, but I don’t have a fever.”
Working as a filmmaker, she is lucky her boss allows her to work just one or two hours a day on the bad days but she continues to feel the weight of not knowing when her situation will improve.
With the world’s attention swirling around the acute and deadly outcomes of COVID-19, she is happy for greater recognition of how the disease is having long-lasting impacts on people of all ages.
“It seems to be like [the public perception is] you die or you’re fine ... But I don’t think five months feeling like this is ok.”
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