Every day, Jan Niklas Lehmann must carefully plan how he spends his energy. Even the most basic activities like cleaning the kitchen or grocery shopping could potentially cause him to ‘crash' — which requires several recovery days in bed wearing noise canceling headphones.
Back in October 2020, Lehmann had a mild case of Covid-19.
"After two weeks of flu-like symptoms, I went back to work as normal, just a little tired. But then the fatigue got worse and worse. By January I couldn't do anything except lie in bed. I forgot very basic things, like why I went to the supermarket, which floor my best friend lived on," he told DW.
Six months after his initial Covid infection Lehmann was diagnosed with ME/CFS — myalgic encephalomyelitis/chronic fatigue syndrome. ME/CFS is a rare condition that can develop after a viral infection. Lehmann explained that the fatigue is so debilitating that he must often spend 20 hours in bed — common among people with ME/CFS. The disease has no known cure.
Alex Kanellopoulos tells a similar story, but one with a very different outcome. Kanellopoulos had a Covid infection in March 2020.
"I was ill for two weeks. I got it fairly badly: I had bad brain fog, I lost a lot of weight, I lost sense of smell and taste. That was quite frightening," he said.
His brain fog also endured after the infection.
"I stared into the void for a long time," he said "But gradually I felt better. My taste and smell came back, I regained energy again and the brain fog left. A couple of months later, I was back to normal."
Lehmann is 29 years old, Kanellopoulos 33. Before their Covid infections, both were completely healthy and active. Lehmann even went to the gym four times per week. So why the drastically different outcomes?
How long is long Covid?
According to the latest research, Lehmann is one of the unlucky ones — one of a very small number of people whose neurological symptoms last long after a Covid infection. But it's more than just long Covid.
For the moment, we don't know exactly how many people like Lehmann are suffering from neurological symptoms long after Covid infection. Rates of long Covid vary wildly, ranging from 15 to 50% depending on how the condition is defined and how studies are conducted.
Few studies, however, follow patients after initial diagnoses of long Covid past six months.
A recent UK-based study has given us the most comprehensive dataset so far about the trajectory of neurological and psychiatric symptoms after Covid infection. Fatigue, depression and anxiety featured heavily in the data.
The study, published in Lancet Psychiatry, gathered data from medical records of 1.2 million people who had Covid over a two-year period
"We looked if patients developed neurological or psychiatric diagnoses over these two years. By comparing these patients with other patients who had a non-Covid respiratory infection, we could look at real Covid risks rather than the effects of living through a pandemic," study author Paul Harrison told DW.
Neurological symptoms after Covid
The results gave a mixed picture. Six months after Covid, people are at increased risk of being diagnosed with an anxiety disorder, depression, cognitive deficits, as well as a whole set of other neurological conditions like epilepsy or dementia.
But between one and two years after Covid infection, there was an interesting split in the data. More common conditions like depression and anxiety actually disappeared in the first year after having Covid — risk of anxiety disorders, for example, went away 58 days after infection.
"This is good news, as it shows these risks like depression and anxiety go away quite quickly," said Harrison.
There was other good news too, as children were found to be even less at risk of developing neurological outcomes after Covid than adults.
"That's not to say that children and young people haven't been impacted by the pandemic," said Harrison. "But the virus itself doesn't seem to dramatically increase risk."
However, the outcomes were quite different for symptoms like dementia, brain fog and psychosis. The risks of these symptoms did not disappear over time, even two years after Covid infection. It is this more severe, rarer category that Lehmann falls into.
Absolute risks of long-term neurological symptoms after Covid are low
Just how high are the risks of getting long-term neurological symptoms after Covid? Harrison explains that the overall risks are low.
"Our paper does show that neurological and psychiatric outcomes are worse after Covid compared to other respiratory illnesses. However, the vast majority of people were not getting these diagnoses, and the excess risk we saw was not very high," Harrison said.
For example, 6.4% of adults with Covid developed cognitive deficits at some point within two years of infection, compared to 5.5% of patients with other respiratory infections. That's only a 0.9% higher risk with Covid.
However risks were higher in older adults aged 65 or older, with risk of Covid-related cognitive deficit and dementia particularly more noticeable.
We can't predict who will or won't get long-Covid, yet
Why did Lehmann develop ME/CFS after Covid infection when Kanellopoulos did not? For now, we just don't know.
Experts are working hard to answer this question. It's still early days, but personalized medicine approaches are being trialed to identify risk factors that might increase the likelihood of developing long Covid.
The aimis to screen patients for expression of certain genes or proteins that increase their risk of developing long Covid. Then, clinicians could select the right treatment for the right person, increasing the chances of success of the therapy.
For now, Lehmann is still battling with Covid-related ME/CFS, undergoing experimental treatments like ‘bloodwashing' in the hopes of getting back to normal and even paying for treatments himself.
"I just want my life back, no matter what it takes,” he said.
Edited by: Clare Roth