THE LONG-HAULERS
About 10 per cent of people experience prolonged illness after COVID-19, with a range of debilitating symptoms. One of these ‘long-haulers’ says the NZ medical community has been slow to recognise the condition, but there is cause for hope.
Up to 10 per cent of people experience prolonged illness after COVID-19.
“YOU THINK IT’S PASSED AND THEN YOU’LL RELAPSE.”
FREYA SAWBRIDGE
Sitting on a beach near her home in Auckland, 26-yearold Freya Sawbridge says she feels okay today, but has a lot of brain fog – one of the many symptoms of what’s become known as ‘long COVID’, which can persist for several weeks or months after the initial infection. “I’m writing in my diary but when I read it back, the words are coming out wrong,” says the law graduate and freelance writer. “I used to be more eloquent, but that’s gone at the moment.”
Since testing positive for COVID-19 six months ago, Sawbridge says she’s had just 10 symptom-free days, punctuated by relapses. Although she’s recovered from an originally mild case of the virus, she’s still got no sense of taste or smell and suffers from symptoms including diarrhoea, dizziness, chest pain, back pain (from the lungs), muscle spasms, and numbness in different parts of the body, which get worse when she relapses.
Around the world, doctors are seeing many ‘long-haulers’ who, like Sawbridge, are young and were previously fit and healthy. “From what is being seen internationally, it is clear that even young people without pre-existing conditions can have symptoms that take months to recover from,” says respiratory and infectious diseases physician at the University of Otago, Dr Michael Maze. “This isn’t just something that affects the elderly or those with serious health conditions.”
It’s estimated that about 10 per cent of people experience prolonged illness after COVID-19, according to an article by a group of doctors in the British Medical Journal. The authors define post-acute COVID-19 or ‘long COVID’ as lasting beyond three weeks from the beginning of symptoms, or if it extends beyond 12 weeks, it’s termed ‘chronic COVID-19’. The symptoms vary widely and, the authors say, include coughing, low-grade fever, fatigue, shortness of breath, chest pain, headaches, neurocognitive difficulties, muscle pains and weakness, gastrointestinal upset, rashes, metabolic disruption (such as poor control of diabetes), thromboembolic conditions, depression and other mental health conditions.
While Sawbridge doesn’t get the fatigue that many with long COVID experience, she has been suffering from post-exertional malaise. “If I’m under intense mental or physical stress, then I’ll have a relapse,” she says. It’s something that US neuroscientist and rehabilitation specialist David Putrino says he’s seen in more than 90 per cent of long-haulers. “We’re talking about walking up a flight of stairs and being out of commission for two days,” he told The Atlantic.
“You think it’s passed and then you’ll relapse,” says Sawbridge. “It’s difficult to tell if I’m making any progress because it’s a cyclical sickness, so there’ll be a day or two when I’m okay, but then I’ll relapse again. This is true for most long-haulers. Some have been able to exercise, go for a run, or see friends, but then they’ll relapse.
“What’s quite alarming for me is that no-one in the medical community in New Zealand seems to know about long-haulers,” she says. “I went to hospital when I was relapsing, but they had no idea what it was. Then I went to a cardiologist last week and talked about long COVID – he didn’t know what it was and neither did the nurse who did my ECG, which is worrying.
“My GP was helpful in that they did tests, but I have to go armed with my own research and build a case for myself, which requires a lot of energy.”
The misconceptions and lack of recognition are frustrating for long-haulers. “We’re not an anomaly – there are hundreds of thousands of us around the world,” says Sawbridge. “It’s estimated there are up to 500,000 in the UK alone – it’s a huge health crisis. I’ve connected with 40 other long-haulers in New Zealand, and I know there will be more,” she says. “Everyone is fighting individual battles and the reluctance to acknowledge long COVID is really disappointing.”
There does, however, appear to be an element of hope on the horizon. In late August, Sawbridge represented New Zealand on a Zoom call with the World Health Organization (WHO) alongside about 60 international representatives from the LongCovidSOS group. A YouTube video called ‘Message in a Bottle – Long COVID SOS’, released by the group, had attracted the attention of the WHO’s COVID-19 response team and the meeting came about as a result. “There are doctors, virologists and epidemiologists in the group and we were able to tell our personal stories, as well as providing a lot of data and research, and the WHO wants to work with us to get more information,” says Sawbridge.
At the meeting, two doctors, Clare Rayner and Amali Lokugamage, both of whom are experiencing the long-term effects of COVID-19, gave their perspectives, which they recounted in a British Medical Journal opinion piece. They emphasised that long COVID needs to be recognised as a separate disease entity to acute COVID.
RESEARCH UNDERWAY
Other encouraging news includes a study that’s being carried out by the University of Otago. “We are aiming to interview everyone in Canterbury who had a PCR test confirmed for COVID-19 during the first wave of infections,” says Maze. “We want to find out how many had symptoms that lasted more than a few weeks and how many are still suffering ongoing problems six months later. We are reasonably early on in the interviews at the moment and so don’t have any results to share yet.”
For Sawbridge, aside from working towards her own recovery, the future includes continuing to write about long COVID to raise awareness, and advocating for those suffering long-term symptoms. “I am not currently suffering from fatigue, but many long-haulers can’t move, so they’re really grateful if someone can do this on their behalf,” she says.
Integrative medicine specialist and GP, Associate Professor Vicki Kotsirilos says that lifestyle advice
Post-viral fatigue affects 40 to 50 per cent of people who have had a virus.
from your doctor can play a big part in helping recovery from the longterm effects of COVID-19. “As a GP, I’d work on a case-by-case basis, based on what symptoms the person is suffering from. It’s important to acknowledge that the person’s symptoms are a normal response following an infection and give them reassurance that the majority of people will recover.”
One of the most prevalent symptoms is chronic fatigue, which is not uncommon when you’ve suffered from a virus, says Kotsirilos. “Post-viral fatigue affects 40 to 50 per cent of people who’ve had a virus and can be caused by a variety of factors, and most people recover,” she explains. “It can be due to the severity of the impact the virus has had on your organs, such as the heart and lungs, and if you’ve been in hospital you’re also more likely to suffer fatigue. There’s also psychosocial distress. With so much negative focus on COVID-19 in the media, it’s creating a lot of community stress and this can lead to anxiety and sleep disorders, which then contribute to fatigue.
“Sometimes it may be the virus itself causing fatigue,” adds Kotsirilos. “Even when a person’s tests come back normal with no signs or causes of fatigue, such as iron deficiency anaemia, and they have normal heart and lung function, they can still have symptoms.”
While you’re recovering, it’s important to adopt a healthy lifestyle and more holistic approach, advises Kotsirilos. “This involves avoiding smoking, illicit drugs, alcohol and other toxins such as household chemicals, while increasing your intake of water, vegetables and fruit. Keeping in touch with friends is also important to avoid social isolation and feelings of loneliness. Ask friends for help and maybe get them to bring a pot of soup to minimise the need to prepare food,” she suggests.
Allowing yourself to rest properly can play a big part in recuperation, as does getting good-quality sleep. “I’d also provide sleep hygiene advice – such as going to bed at the same time each night and getting up at the same time every morning, resting before bed, maybe reading a gentle book, and avoiding the news because it provokes anxiety.”
BUILDING UP GRADUALLY
Aside from fatigue, many people seem to be suffering from headaches and brain fog, says Kotsirilos. “Here, it’s important not to go back to work too quickly. If possible, rest, meditate and avoid the computer, or make sure you take lots of breaks from it, so you can let your brain rest.” As your energy improves, Kotsirilos suggests increasing exercise gradually, using a strategy known as activity pacing. “You can build up exercise capacity slowly. At first, it might just be walking outside the house and around the garden.” Getting outdoors to exercise is also beneficial, but the emphasis is on a gradual build-up as the energy improves.
Physiotherapist Michael Dermansky agrees with the paced approach, especially for those suffering from post-viral fatigue. “As you start to resume normal activities, the muscle strength and endurance are just not there, causing severe fatigue,” he says. “Therefore, it’s extremely important to learn to pace your activities to avoid the ‘boom/bust’ cycle that leads to frustration and more fatigue.”
Exercise can also help with the psychological and social effects of the coronavirus and associated isolation, says Dermansky. “Gradually getting back into a social and communal environment in a safe way is extremely important. Participation in exercise classes and trainings run by physiotherapists are good ways for people to come together safely, work on regaining strength and connect with other people again,” he says. “Even during lockdown, Zoom exercise sessions that involve not only interacting with the instructor but with other participants are an important part of rebuilding your social network and connecting to others.”
Meditation and deep breathing are also effective ways to reduce stress and to help you recover. “However, if you’re suffering from anxiety or a mood disorder, it’s important to talk to your GP,” says Kotsirilos. “You may need a referral to a psychologist, particularly if there are additional stressors. Unfortunately, in very few cases – about five per cent – there are patients who suffer from chronic fatigue syndrome for up to 12 months, and this is an area that’s poorly acknowledged and understood. It’s a recognised condition, and too much exercise can make it worse. In these cases, a GP would refer you to a specialist for more testing and care.” If post-viral symptoms continue beyond two to three months, Kotsirilos suggests patients go back to their GP. “They’ll be able to order appropriate tests, such as blood tests, and possibly tests for heart and lung function, and a referral to a relevant specialist.”