Jenene Crossan was among the first New Zealanders to develop long-Covid after contracting Covid-19 during an overseas trip in early 2020. There was an expectation that she and other sufferers would eventually get better, but for many, that hasn’t been the case. If anything, Crossan’s health has worsened, as she has developed autoimmune disorders triggered by the virus.
“Recently, I had a myositis diagnosis,” she says. “It’s an autoimmune condition that causes chronic inflammation and weakness in the muscles.
“I used to be a boot camp girl and ran half-marathons. Now, if I go out shopping in the morning, I’m so shattered I have to lie on the couch for the rest of the day.”
When researchers at the University of Oxford looked at 475 people who had been hospitalised with Covid-19 in the first wave of the virus before vaccines were available, they found that many symptoms worsened over the following two to three years and some participants reported new symptoms.
“I was expecting to see a gradual improvement,” admits Maxime Taquet, lead author of the study, published in the Lancet. “I wasn’t expecting that on average people would be getting worse.”
Most participants reported at least mild symptoms, including depression, anxiety, fatigue and cognitive decline, and more than one in five experienced severe symptoms. For a quarter, the impact on their health resulted in them changing their occupation.
Cognitive testing confirmed brain function had been affected. Many participants had IQ scores that were lower than expected considering their age, education and other factors.
“We didn’t have data for these participants from before they had Covid-19, for obvious reasons,” says Taquet. “But we did have access to data from a large population of people who didn’t have Covid and completed the same test as part of the Great British Intelligence Study and we were able to use that for comparison. We found, on average, our participants were about 10 IQ points below the expected level.”
The testing took place online, but Taquet did have contact with some members of the cohort.
“One that really stuck with me was a man who was high achieving and had a very important job but had to stop because he couldn’t meet the demands of that job. This is the impact the cognitive deficit can have on people’s lives.”
The risk of long Covid is believed to have dropped since that first wave of the virus, but there are still large numbers of new cases. Taquet believes his research has identified a window of opportunity.
“We know that if people have some symptoms at six months then it’s very likely they will start developing further symptoms down the line,” he says.
“So, if we can identify and target those symptoms early then it might prevent a later onset of a more complex constellation of symptoms.”
Previous research has found sufferers have elevated blood biomarkers, C-reactive protein and D-dimer, which are linked to inflammation and clotting problems.
“The jury is still out on what this means but it provides a clue that biological mechanisms are at play and explains some of the symptoms we see even three years after hospitalisation.”
The Long Covid Registry Aotearoa New Zealand has provided some evidence of the burden of illness here. It reported myriad persistent symptoms, from fatigue, brain fog and sleep issues to breathlessness, muscle and joint pain, headaches and irregular heartbeat.
Only 4% of those who completed a follow-up survey had recovered after six months. Most needed increased healthcare, such as GP and specialist visits. And their work or study was adversely affected.
Crossan, who contributed to a University of Auckland report for the Ministry of Health, has now been prescribed an immune suppressant to try to control her autoimmune response. She says some long Covid sufferers have responded well to low-dose Naltrexone (LDN), a drug that is primarily used for addiction but also helps moderate the immune system and calm inflammation, so is being used as a long Covid treatment. Other drugs being trialled off-label include ones for blood pressure, diabetes and ADHD.