About 5% of U.S. adults are estimated to be living with long COVID-19, and one of them is UC San Francisco epidemiologist and long COVID researcher Alison Cohen , PhD, MPH.
Cohen, who was involved in COVID-19 research since the beginning of the pandemic, was infected for the first and only time in January 2022. Debilitating symptoms such as fatigue and the inability to sit or stand for long periods of time have never gone away. She's used her expertise as an epidemiologist and as a patient to deepen our scientific understanding of the disease, including authoring a recent paper that found promise in the extended use of the antiviral Paxlovid .
But it's been five years since the pandemic began, and there are still no federally approved medications to help the millions of people living with long COVID. We spoke with Cohen to learn about how she manages her symptoms and whether potential treatments are in the works.
What is long COVID, and what are the symptoms?
Long COVID is defined as having symptoms for at least three months post the acute phase of the infection. Everyone who gets a COVID-19 infection is at potential risk for developing long COVID. It's important to emphasize, especially as we are still living with this virus, that there's a new risk of developing long COVID with each new infection.
Long COVID is a very heterogeneous disease with over 200 documented symptoms, and patients often have clusters of those symptoms. One of the more common includes what's often described as chronic fatigue or post-exertional malaise, which is when you're bone tired all the time. It's all encompassing, even after sleeping solidly through the night. Cognitive symptoms like brain fog are also common. That can be described as the cognitive equivalent of trying to wade through shoulder-high mud.
There are also a lot of people with what's called dysautonomia symptoms. That's when your autonomic nervous system, which we count on to keep our circulatory and nervous systems working, no longer works well. Blood doesn't circulate as well, and nervous system reactions don't work as they have previously. Other symptoms included things like loss of smell or loss of sense of taste.
How has long COVID affected your life?
Long COVID for many, including me, is an energy limiting condition. That means that there are fewer hours in the day to do things, and there are more activities that are off limits. I can no longer do long runs. Or even long car rides.
The only thing we know that makes long COVID worse is getting reinfected. That means I work very hard to avoid reinfection. Since I was infected while wearing an N95 mask and being vaccinated, I know that one-way masking is insufficient protection for me. So, I am restricted to doing things, socializing or meeting with folks, primarily outside because universal masking is not endorsed in most places these days.
How do you manage your symptoms?
By paying attention to symptoms, I try to predict what windows of time will be best for certain activities and when I need to rest. I try to listen to my body as much as I can.
There's a concept that's used by many people with disabilities that's called Spoon Theory. You know how in some diners, there's this jar of utensils on the table? Imagine each spoon represents a unit of energy that can be spent on daily activities. Showering is going to be a spoon, doing the dishes is a spoon, doing any work is a spoon, socializing with family or friends is going to be another spoon. There aren't enough spoons to get through the day so having a chronic disability means rationing and prioritizing your spoons. Some days you only get one spoon.
Has having long COVID also informed your research?
Yes. I think of it as a privilege and a challenge. There's an opportunity for me to apply these epidemiologic methods that I have studied and used, and my understanding of research - how to get grants and federal funding - to figure out how we can use those tools in service of the research questions emerging from the long COVID patient community.
I have a deep understanding of how the research community works, and I also have a deep understanding of what it's like to be a patient living with long COVID. In listening to a lot of other patients with long COVID describe their experiences, I can identify where these opportunities overlap and how we can be working all together.
What does the future look like for people with long COVID?
There is unlikely to be a single silver bullet. There are likely going to be some treatments that help some people, and other treatments that help other people. It's going to require a multi-pronged research effort to identify enough different contenders that could meaningfully help the millions of Americans living with long COVID today, as well as millions more around the world.
Meanwhile, there are a lot of things people without long COVID can do to support folks living with long COVID. It requires a collective effort to help reduce reinfection risk so you can avoid getting other people sick by masking and staying home if you have symptoms. Also, you likely know someone who has long COVID. You can check in with them and see what you can do to help.
