Long COVID Experts: ‘So Incredibly Clear What’s at Stake’
Oct. 18, 2022 –Colin Furness has made it this far into the pandemic without testing positive for the coronavirus, and he’s working hard to keeping it that way.
As an expert at the crossroads of infectious diseases and organizational decision-making, Furness, PhD, an epidemiologist and assistant professor at the University of Toronto’s Faculty of Information, is determined to do everything in his power to avoid infection, and thus, any long-term symptoms – including the syndrome known as long COVID.
Furness, an outspoken advocate for COVID-19 prevention, wears an N95 or N99 respirator mask when sharing air with others, including while delivering his university lectures. He uses a carbon dioxide detector in class to monitor the ventilation. He’s had four vaccine shots – two doses and two boosters – to date and avoids public transportation by walking to work, a privilege he readily acknowledges not everyone has. He won’t eat indoors at restaurants and meets his 10-year-old son for lunch outdoors so his fifth grader never has to unmask at school.
Staying vigilant while mostly everyone else in the world has seemingly moved on from the pandemic is a strange feeling, he says, but among the long-term consequences that scare Furness the most are the lingering brain effects experienced by millions of long COVID patients worldwide.
It’s estimated that more than a third of people who have had COVID-19 also have neurological complications such as brain fog that persist or develop 3 months after infection. And two-thirds of people with long COVID still have neurological symptoms after 6 months, at least some studies show. Experts and advocates say this must be considered in every step of the response to the pandemic – from public health messaging and prevention to treatment, social assistance, and health care reform.
COVID-19 can harm the brain in several ways, and one of them is inflammation that leads cells in the body to act abnormally, known as cell dysregulation, says Furness, who often looks into coronavirus research on Twitter.
The virus, he says, can have chaotic and unpredictable effects.
“It’s like releasing a bunch of snakes in an office building. People start screaming and they stop working. So if your brain is an office building, and the employees are the brain cells, you release this [virus] and people start screaming and running back and forth, and no one’s dead, but no one’s getting any work done,” Furness says.
It’s a frightening metaphor about the loss of productivity. Recent data reveals long COVID is keeping 2 million to 4 million Americans out of work, and the virus is still killing nearly 400 people in the U.S. every day.
Amid mounting evidence that COVID-19 causes not only mild cognitive impairment, but is also linked to long-term conditions including new-onset Alzheimer’s and Parkinson’s diseases, Furness has been ramping up his message for more protective measures and care.
For example, last month he called on the government of Ontario, Canada’s most populous province, to start building space for more dementia beds as well as long-term care facilities that specialize in brain health for an aging population.
But the coronavirus doesn’t affect the thinking skills of just older people, and COVID-19 researchers still need to better define risk factors regardless of age, says Joanna Hellmuth, MD, a neurologist and researcher who specializes in post-viral cognitive conditions at the University of California, San Francisco.
“This is a real problem, but there’s this additional layer of injustice that’s happening because of cultural issues that cause us to stigmatize people with cognitive disorders,” she says. “If you’re younger, there’s that subtext, like, is this psychosomatic? A lot of doctors push that narrative, and some patients don’t even believe it themselves, so people are reluctant to seek care.”
And still, the tools for measuring long COVID’s cognitive symptoms are also lacking. Anne Bhéreur, MD, a family doctor in Quebec who has long COVID, says even with her recent thinking problems, she aced one of the most widely used tests, the Montreal Cognitive Assessment, because it was designed for older people, ages 55 to 85, with more advanced difficulties.
Since getting COVID-19 while working in palliative care in December 2020, the 46-year-old says she has been physically and mentally impaired with brain fog and myalgic encephalomyelitis, also known as chronic fatigue syndrome, or ME/CFS, a common condition for long COVID patients. Of the many things she has lost (including the ability to speak without regular Botox injections into her damaged vocal cords) is the ease with which she used to be able to do the most basic cognitive tasks, such as reading and writing.
When she has ME/CFS-related crashes, known as post-exertional malaise, after even minor physical or mental exertion, she says she becomes “a dummy.” Bhéreur has been unable to work for nearly 2 years.
Treatments for long COVID – and most brain conditions for that matter – are still elusive. “We definitely need more research to better understand it, but we also need more research to really treat long COVID,” says Ziyad Al-Aly, MD, a clinical epidemiologist and prolific long-COVID researcher at Washington University in St. Louis.
“The comprehensive list of treatments for long COVID is zero drugs – none whatsoever. And in my view, this is a colossal failure,” he says. “We also need vaccines that are designed to protect us not only from severe disease in the acute phase, but also against long COVID.”
In addition to funding and speeding up clinical treatment trials, governments should be making other responses, says Hannah Davis, co-founder of the Patient-Led Research Collaborative and a leader of long COVID advocacy during the pandemic who has long COVID herself.
In testimony before the House Select Subcommittee on the Coronavirus Crisis in July, the New York City-based artificial intelligence expert and co-author of several long COVID studies called for action right away, including paid leave to rest during the first couple of weeks of illness, unemployment and disability benefit reform, and other financial assistance to the millions of patients unable to support or care for themselves. “I definitely see a need for an interim stage group-home situation,” she says. “There are people who are unable to function on their own, who are living on their own and need a lot of support. I think that’s only going to keep growing.”
And yet one of the biggest gaps in addressing how long COVID is dealt with is that “everyone’s sense of risk is messed up right now,” says Davis. “People who are getting long COVID now after being vaccinated and boosted, or getting reinfected, are really angry,” she says.
Recent survey data from the U.S. Census Bureau and CDC shows that 30% of all adults who ever had COVID had long COVID symptoms. A federal government report published in March found that “long COVID has potentially affected up to 23 million Americans.” Acting on these mass numbers, says Davis, “doesn’t feel alarmist.”
COVID-related brain fog symptoms are similar to the effects of a concussion, says Andrew Ewing, PhD, a professor of chemistry and molecular biology at Sweden’s University of Gothenburg and a vocal advocate for COVID-19 prevention. Although it’s not yet clear exactly how damage occurs or how brain cells are harmed, among the things he finds most unnerving about the condition is that every time someone has it, it’s like getting repeated head trauma.
“That’s what we need to avoid,” says Ewing, who believes that people should still be masking, social distancing, and isolating for longer periods after infection. “That’s what these foolish ‘let it rip’ people are missing.”
For researchers, advocates, and observers who keep up with studies on COVID’s neurological pathways and symptoms, remaining cautious is simply a no-brainer. “If everyone were really fully informed – I mean really fully informed – and they understood the way I did, we wouldn’t need mask rules,” says Furness. “We wouldn’t need them because it would be just so incredibly clear what’s at stake.”