Mirabai Nicholson-McKellar tested positive for Covid-19 the same month the World Health Organization officially declared a global pandemic.
She had just returned to Australia from Berlin, where she worked as a filmmaker and beekeeper. She had nerve pains and headaches, and lost her sense of smell and taste, but felt relieved to have “escaped what they said was a very mild case of Covid”.
But other symptoms developed later: “lightning headaches that would make my brain feel like it was splitting in two,” sinus pain, nausea, diarrhea, chest pain, difficulty breathing. “I thought I was going crazy,” she says.
Almost two years later, the effects of the virus still linger. “I still feel crippling fatigue. I have problems with sleep, brain cognition and memory,” she says. “I can’t think straight, I can’t remember things.” This made her unable to work.
“Having Covid has completely changed my life,” says Nicholson-McKellar, who is in her 30s and now lives near Byron Bay. “For almost two years, I’ve been living in a trailer on my brother’s property because I can’t afford to pay rent.
“I’ve had different doctors who have been wonderful and…supportive, and I’ve had other interactions with people who have listened very sympathetically to all of my symptoms and basically dismissed them as anxiety,” says -she.
She is frustrated with what she sees as a binary characterization of Covid: perceptions that it’s either like “a mild flu or you end up in hospital and you could die”.
“What about the rest of us who get mild to moderate Covid, we manage to stay home, but we never seem to recover?”
“The evidence is clear”
Public health experts have warned Australia is flying blind when it comes to accurately assessing the scale of long Covid, with some estimating there could be 10,000 cases of the syndrome in the country by the end of the year.
Over the past two years, researchers have gained a clearer picture of what causes long Covid and the myriad effects it has on the body. In October, the WHO formalized a clinical definition the condition: it generally begins three months after a symptomatic Covid-19 infection, lasts at least two months and cannot be explained by an alternative diagnosis.
The research community has known for some time that the syndrome, also known as PASC – post-acute sequelae of Covid-19 – can affect almost any organ system, says Dr Ziyad Al-Aly, director of the clinical epidemiology and assistant professor at the School. of Medicine at Washington University in St Louis in the United States.
A theory because what causes Covid for a long time is that the virus persists in reservoirs in the body, triggering a chronic inflammatory response. Another is that the virus causes the immune system to misfire and attack the body, with similarities to an autoimmune disease.
More than 200 symptoms of the long Covid have been identified to date, including, most often, fatigue and brain fog. The symptoms can be very varied: heart palpitations, blurred vision, tinnitus, tremors, sexual dysfunction.
“The idea that viruses can have long-term ramifications is not really new. We have decided over the past 100 years not to pay attention to it,” says Al-Aly, citing a lack of funding for research into other post-viral conditions such as ME/CFS – chronic fatigue syndrome. , also known as myalgia. encephalomyelitis.
In ME/CFS and long Covid, the symptoms are varied and often subjective, which makes them difficult to understand and can predispose people to skepticism, says Dr Elisha Josev of the Murdoch Children’s Research Institute.
Josev, who studied ME/CFS in adolescents, says the overlapping symptoms include cognitive difficulties, relentless fatigue, and post-exercise malaise – in which symptoms are severely worsened by even minor activity. “They really have a striking resemblance to each other,” she says.
While progress has been made since the start of the pandemic, a lack of recognition of long Covid and clinicians telling patients “it’s all in your head” still occurs, says Al-Aly.
New research co-authored by Al-Aly, published this week in Nature Medicinecompared the cardiovascular outcomes of 153,760 Americans who had Covid with more than 11 million people who did not.
More than 30 days after infection, people who had had Covid were at higher risk of conditions such as heart attack, stroke, heart failure, myocarditis and pericarditis – even when the initial infection was mild or asymptomatic. “The evidence is absolutely and irrefutably clear,” says Al-Aly.
“These are manageable conditions… but they are definitely not curable conditions,” he says. “It is very clear to me now that there is a group of long haulers who will bear the scars of this pandemic for a lifetime.
“Everyone is so obsessed with counting acute issues…the number of Covid cases, hospitalizations, deaths in the first 30 days,” says Al-Aly. “It really is the tip of the iceberg.”
Need better tracking
Olivia, a Melbourne woman in her early 30s, has been trying to get medical help for her long Covid for 18 months.
She was admitted to hospital in early 2020 with cardiac and respiratory distress, but fatigue and brain fog are now what troubles her. “I used to do extreme sports several times a week, and now it’s once a fortnight or once a month, and then I have to recover [afterwards],” she says.
“Before I got Covid, I was running my own business as well as my full-time job,” she says. Then it became exhausting to stare at screens and she started to misspell or use incorrect words in emails. “I can’t read or write long chunks of text…It’s like I’ve developed dyslexia.” She was then fired.
Olivia was recently referred to a brain clinic at a Melbourne hospital and is expected to begin rehabilitation soon. “I wish I had gotten help sooner,” she says. “I don’t want to be in this position. I could have gone to rehab a year ago.
Long Covid must be taken seriously, says Dr Karen Price, president of the Royal Australian College of General Practitioners.
“GPs are under enormous pressure at the moment. We are caring for Covid-19 positive patients in the community and managing the long Covid and vaccine roll-out, in addition to our day-to-day care and remedial patient care. who have delayed or avoided health care during the pandemic,” she says.
“The RACGP has developed guidelines to support general practitioners caring for patients with long-term Covid, which includes information about the mental health impacts of acute illness and acknowledgment and validation of the patient’s experiences.
The wide variety of long-lasting effects of Covid can make it difficult to manage, as no drug can permanently cure the disease. Rehabilitation can require input from many different health professions, says Scott Willis, national president of the Australian Physiotherapy Association.
Willis has unique experience with the syndrome, both treating patients with long Covid and having had it himself. He contracted the virus in April 2020 in a hospital in Tasmania.
Before the infection, he swam 3 km four times a week and ran and cycled. “These 18 months have been quite frustrating,” he says. Although he was able to resume physical activity, he never regained his pre-Covid level of fitness.
“I’ve been to the point of exhaustion with fitness, but Covid exhaustion – it’s completely different,” he says. “It’s like your whole body shuts down, there’s no power in your legs, no power in your arms.”
Willis was able to identify what triggers his long Covid symptoms and avoid overworking himself to the point of extreme fatigue. He took a similar approach while working with long Covid patients at Coastal Physiotherapy, the practice he co-directs.
“What we’re trying to get them to do is a lot of intermittent activity so they don’t reach a threshold that takes them to a flare-up,” he says.
Willis calls for better monitoring of Covid patients in Australia. “There needs to be some communication between the acute environment in hospitals and primary health care,” he says.
Willis says the federal government should introduce dedicated elements into the Medicare benefit schedule for treating long Covid. “If you go to a GP and you have long Covid, it’s just billed under Medicare as usual. There is no tracking or tracing of these people.
“They might need psychology, physiotherapy, occupational therapy, social work. They might need medical intervention due to heart disease,” he says. “Those kinds of things need to be more integrated.”
On good days, Nicholson-McKellar tries to enjoy the slower pace of his new life, tending to his garden and his bees. On bad days, when her symptoms flare, she mourns the life she once had.
“People keep telling me, ‘Oh, you’ll heal eventually,’ but we don’t really know that,” she says. “An incredibly difficult part of this disease is…not knowing if this is how my life will be forever.”
A doctor prescribed him medication that alleviated some of his symptoms and improved his quality of life. “I feel supported,” she says.
“I know at this point it’s a pattern of expectation, hoping that there are treatments coming out of new research that will actually help me recover rather than just help me cope.”