In late 2020, life changed for Larisa Hockey. She and her three teenagers went from being outdoorsy people who enjoyed hiking, mountain biking and riding horses over their 300ha property near Gisborne to not being able to get out of a car and walk a few metres. The entire family had caught Covid-19 that September, and only Hockey’s husband escaped the post-viral syndrome that was slowly becoming known as long Covid.
“My son never got better and then my daughters and I slowly got worse and worse,” recalls the 49-year-old. “At first, we tried to keep going, which is what a lot of people do, but your body says no, you’re not doing anything else. The first year was spent mainly in bed. We had heart palpitations, dizziness and felt awful, like we had flu, all the time. We’ve gradually improved from there, but still have a long way to go.
“My son is now 19 and at university, but he has to be very careful with his energy and can’t exercise. My daughters are 15 and 17. They can’t work or study and spend most of their time resting. We can’t go for walks on the beach, attend church or other social gatherings. It’s a very isolating, scary condition.”
Hockey has coped thanks to the support of her husband and a wide circle of friends and family. Connecting with other sufferers has been helpful too, and she started New Zealand’s branch of the Long Covid Kids support group, which enables families with sick children ranging from toddlers to teens to share experiences and encouragement. She also belongs to a Facebook group that has led to the creation of a not-for-profit organisation, Long Covid Support Aotearoa.
“People from all walks of life have been brought together because of this condition,” she says. “The difference that has made for me has been immense.”
DIY support
As any patient will tell you, treatments for long Covid remain limited and recovery is slow and unpredictable. There are only a handful of clinics in New Zealand dedicated to the condition and for many sufferers, support from the long Covid community is something they have come to rely on.
Tech entrepreneur Jenene Crossan was an early adopter, catching the original strain of Covid-19 while in London in early 2020 and becoming one of the first New Zealanders to develop the post-viral condition. Since then, Crossan has found herself leading Long Covid Support Aotearoa and liaising with medical researchers who are focused on learning more about long Covid. It has become, she says, “a very bizarre side hobby to have”.
Three years on, such early symptoms as brain fog, fatigue and joint pain may be easing, but Crossan has been left with longer-term health problems including the autoimmune condition Hashimoto’s disease, which affects the thyroid gland that makes hormones that control the way the body uses energy.
“I’ve adapted to my life,” she says. “I’m in a very different place to where I was when I couldn’t do anything, when I was completely and utterly incapacitated. But I know that I’m never going to get back to the way things were. I have a long list of things that my body does differently now.”
Crossan’s experience, and that of others she has met through the support group, is that medical professionals often don’t have any idea what to do for their long Covid patients.
One of her doctors suggested she should try the Lightning Process, a mind/body approach to retraining the nervous system that involves neurolinguistic programming techniques. Another member of the support group was given a worksheet to help her reframe what she was going through with positive self-talk. So, instead of “I am always tired”, she was instructed to tell herself, “My energy levels are improving.” Rather than “I have diarrhoea”, she was to say, “I am on the mend.” Crossan calls this medical gaslighting. “You can’t just think your way out of this,” she says.
Building a picture
Someone with long Covid often looks perfectly fine. There hasn’t been a reliable test for it and many of those affected may not have been tested for Covid-19 in the first place. The symptoms are wide-ranging and numerous. All of that can add up to people – and sometimes the sufferers themselves – not really believing in it.
“The only way we’re going to get long Covid put into the mix of things to be taken seriously is to be able to show its impact, and at the moment it’s a really silent impact,” says Crossan.
Long Covid Support Aotearoa is trying to help change that with a website created by patients in collaboration with the University of Auckland. At longcovidsupport.co.nz, as well as finding the latest evidence-based information, afflicted people will be able to add themselves to New Zealand’s first long Covid registry. Professor Paula Lorgelly, a specialist in health economics at the university, says sufferers registering through the website, then taking part in a detailed survey, will provide medical researchers with a clearer picture of how great the long Covid burden is and what people are going through.
“We’re trying to understand the lived experience of a population that was infected much later than other populations,” says Lorgelly. “What are people’s symptoms? What is their quality of life? What other medical problems have they got as a result of long Covid? How are they doing at work? How is their whānau coping?”
In this country, long Covid is defined as symptoms that develop during or after a Covid-19 infection, that continue for more than 12 weeks and that are not explained by any other condition. International data shows that 10-20% of those infected with the virus go on to develop it.
A study by Te Herenga Waka Victoria University of Wellington estimated that one in five New Zealanders is likely to experience long Covid after an infection and recommended that it should be recognised as a disability.
Lorgelly is aiming for 3000 people to sign up to the Auckland University register in the first instance, and there is scope for it to get bigger. She says sufferers tend to fall into one of three groups and some will be easier to reach than others.
“There are those who know they’ve got long Covid and have told their GP, who hopefully has believed them. There are people who think they might have it. And then there are some who are absolutely shattered but assume it’s part of life and getting old when actually it’s long Covid.”
As well as supplying researchers with information, the registry will be a resource for government agencies responsible for providing services and treatments for those disabled by the condition.
Familiar symptoms
When the pandemic was first showing signs of afflicting some people with longer-lasting health consequences, one researcher was already poised to begin uncovering exactly what might be going on. Emeritus Professor Warren Tate, a biochemist at the University of Otago, has long been studying another debilitating post-viral condition: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Thirty years ago, his daughter was struck down by it after a bout of glandular fever, which is caused by the Epstein-Barr virus.
At the time, ME/CFS was considered by many health professionals to be a psychosomatic disorder rather than an actual illness. Tate set about doing the science to find biological reasons for the symptoms, which include exhaustion, brain fog, insomnia and joint pain, all very familiar to long Covid patients.
Funding was hard to come by, with much of it donated by the families of those affected. Tate was determined to help them, and eventually he found differences at a cellular and DNA level in ME/CFS sufferers that he believes explain the fatigue and neurological problems they experience. He has since found very similar inflammatory immune signatures in people with long Covid.
“From all of my studies, and also my interpretation of the literature with 30 years of knowledge of ME/CFS, I’m seeing huge similarity between the two diseases,” he says. “My opinion is that they are much more similar than probably the existing worldview at the moment, which says they are closely overlapping.”
Significant variation
Even the term “long Covid” is problematic, because it covers such a broad spectrum of people – from the 59% of sufferers left with organ damage a year later (according to research from University College London) and those who were hospitalised with a severe infection and are slowly recovering, to patients who weren’t particularly ill at first but a few weeks later developed new symptoms.
It is this diversity that is going to make both diagnosis and treatment challenging. In May, a long Covid blood test was made available in Australia. It was developed by US medical laboratory IGeneX, which has expertise in testing for the tick-borne Lyme disease.
This first long Covid test focuses on finding inflammatory biomarkers that were identified by a review of 28 studies published in the journal Frontiers in Medicine.
Although excited that science is making some progress, Tate sounds a note of caution. “All my studies with ME/CFS and also long Covid are suggesting there is a lot of variation among individuals,” he says. “The danger is this test may only identify a sub-group of long Covid and give those patients the label so they have access to support services, whereas other groups may receive false negatives.”
Primed for it
As well as diagnostic tools, science is also beginning to supply clues as to why some people develop long Covid and others escape it. A recent UK review published in JAMA Internal Medicine found that older people, smokers, women, those with a higher BMI (body mass index), pre-existing medical conditions, or previous hospital or intensive care unit admissions all have a higher risk. Meanwhile, scientists from the University of Hong Kong have found a link with the gut microbiome: long Covid patients had fewer “friendly” bacteria and more “unfriendly” bacteria than a comparison group who didn’t have Covid.
At Otago, Tate has been conducting a survey, looking at the family and medical histories of patients with long Covid and ME/CFS, and he now believes some people are primed to develop a post-viral condition.
“First, there’s a genetic link. In other words, they have inherited little variations in the DNA that are silent until something like this comes along. Also, we found with people who’d had events before – perhaps glandular fever they had taken a long time to recover from – getting Covid could send them into long Covid.”
In the US, the National Institutes of Health has poured $1 billion into long Covid research. The agency has been criticised for its lack of progress, but it has supported work that suggests the SARS-CoV-2 virus causes brain inflammation that can persist after the infection is gone, and this has been linked to long Covid. Whereas that study involved hamsters, brain imaging of 785 participants in the UK Biobank, a large research resource, has found changes in the brain among participants infected with the virus.
That so much seems to be pointing towards neuro-inflammation makes sense to Tate, who has traced the pathways involved and considered how it may be leading to long-term illness and relapses. His thinking is that dysfunctional brain signalling is the key. Via the nervous system, the immune cells keep sending signals that something is wrong, and in response the brain keeps activating the immune system, creating inflammation.
“The question is, how can we switch all of that back? How can we repair the dysfunctional brain signalling?”
One solution to these neurological problems may be antioxidants. Tate has done some very small tests with coenzyme Q10 and MitoQ.
“At least at the molecular level, this looks like it is giving some improvements over time. Unfortunately, although their molecular biology might be doing better, people haven’t necessarily felt an improvement in symptoms. But there are a number of antioxidant combinations available and it could be that some patients will benefit from one thing and some from another.”
Tate is now investigating a dahlia extract that has been shown by Wellington-based University of Otago researchers to have benefits for reversing diabetes symptoms and may also have the potential to influence inflammatory pathways. “We’re going to do a little trial initially just to see if we can get any improvement.”
There are lots of these smaller studies happening. One German project found nicotine patches helped symptoms clear, but it followed only four people. Longer term, Tate hopes some of the newer immunomodulating drugs might be useful to target long Covid.
In the meantime, there is evidence that vaccination can help to a degree. In a study published in the BMJ, French researchers found it could lessen the severity and duration of long Covid in affected patients.
‘I look like a bullfrog’
Cara Marshall, 40, of Whitby, Porirua, is vaccinated. She caught Covid last year, most likely on a flight to Rarotonga, and is now too fatigued and brain-fogged to do the IT job she loves.
One of her symptoms is that her throat and neck swell up. “I look like a bullfrog,” she says.
Marshall laughs as she lists everything she is trying to get well, but tears aren’t very far away because so far nothing is making enough difference.
“I’ve got copious amounts of supplements, CBD oil, probiotics,” she says. “I’ve been trying submerging my face in icy water for 30 seconds to reset the vagus nerve; I hate the cold, so that’s fun. I’ve got an antihistamine because apparently that helps. I’ve had massages to drain the lymph nodes.
“I’ve tried changing my diet and cutting out sugar, processed food and alcohol. I believe I’m making progress but it’s unpredictable. I can’t tell how much energy I’m going to have on any given day.”
She is involved with Long Covid Support Aotearoa and has contributed her digital skills to the new website. Even if she can manage only half an hour at a time, it has been fun, and good for her mental health. “I’m not completely useless; I can still do stuff.”
If Marshall focuses on the negatives, then her mood spirals down, so she works hard to stay positive, and the long Covid community helps with this, whether they’re sharing jokes and memes on the Facebook page or celebrating each other’s small triumphs. “No one else is particularly impressed that you’ve managed to put a load of washing on.”
More help is starting to emerge. ME Support has created an online resource, mesupport.org.nz/longcovidhelp, which consists of a series of videos that cover managing the condition, dealing with medical professionals and accessing other support.
Still, trawling through all that information uses a lot of mental capacity for someone with fatigue and brain fog. And the patient and their whānau are still working through it alone.
Recovery pilot
Brain injury rehab specialists ABI Rehabilitation Services is running a trial programme it hopes will offer a solution. It has been adapted from a recovery tool developed by Britain’s National Health Service.
Michelle Wilkinson, ABI’s service development manager, says it made sense to her that the organisation should be able to offer some sort of practical help for long Covid sufferers. After all, dealing with fatigue, brain fog and mental health problems is all part of helping someone with a brain injury, so ABI has a lot of experience and expertise.
“We all kept saying we need to do something in the space because there’s really nothing available at all,” says Wilkinson.
Funding has been secured for a pilot-long Covid recovery programme working with 120 patients – 30 have been signed up so far.
Rather than being purely web-based, as in the UK, the clients on ABI’s programme are assessed by a clinician, either in-person or via telehealth, and then have ongoing support. They get to talk through symptoms and their physical capacity, and are guided in navigating the platform.
“The clients have really liked having that personalised conversation with someone who has taken the time to listen and acknowledge what they’re going through,” says Wilkinson.
The online modules have been developed with input from people who have experienced long Covid and clients can work through them at their own pace.
“We’re seeing a huge range in terms of symptoms and severity. Some are saying they can spend only five or six minutes on screen looking at the platform at any one time. And that’s fine; there’s no specific time frame that it has to be finished in. They can access it for up to a year.”
For now, the organisation is proceeding slowly, taking a few clients at a time and tweaking things as they go. At present, the online material is very British in tone. Ideally, it would be made more Kiwi-friendly. Also, ABI is able to offer the programme only to patients referred to it who have at least one other medical condition. The plan is to evaluate how well it works for the first group before trying to expand its reach.
Last year, a survey of people with long Covid in the UK found 95% of them experienced stigma about the condition, at least sometimes. Many felt they had been discriminated against and 86% reported feelings of worthlessness and shame.
Larisa Hockey isn’t a fan of toxic positivity. But she tries to focus on what she has to be thankful for and says she is proud of the way her family are handling what has happened to them.
“We’re accepting this is where we’re at and these are our limitations right now. But we have a lot of hope for the future. It helps that we’re seeing some improvements. That makes it easier to think we’re going to get there.
“But, of course, we have some really tough times, too.”
Long Covid symptoms
The World Health Organisation says there are more than 200 symptoms of long Covid. These are just some of them:
- Anxiety
- Brain fog
- Breathing difficulties
- Depression
- Dizziness
- Fatigue
- Fever
- Gut disturbance
- Insomnia
- Joint pain
- Loss of smell
- Loss of taste
- Loss of voice
- Mast cell activation syndrome (repeat episodes of the symptoms of an allergic reaction)
- Migraines and headaches
- Muscle pain
- Nausea and vomiting
- Nerve pain
- Palpitations
- Pins and needles and numbness
- Post-exertional malaise
- Postural orthostatic tachycardia syndrome (a reduced amount of blood returns to the heart after standing up from a lying-down position)
- Reduced appetite
- Tinnitus