Cleveland Clinic Neurologist Dr. Robert Wilson discusses his research on COVID-19, and the extent to which long COVID can affect people’s daily lives.
While cases of COVID-19 wax and wane, a recent report estimates that at least 22 million people in the United States have been affected by long COVID. The lingering symptoms of long COVID, like fatigue and brain fog, can have debilitating consequences on people’s daily lives. As the medical community strives to better understand long COVID, experts urge the public to remain alert about COVID-19 and continue to take precautions.
In Being Patient’s LiveTalk series, neurologist Dr. Robert Wilson, director of Cleveland Clinic’s Autonomic Center, speaks about his team’s research into the long-term effects of COVID-19, long COVID’s profound impacts on individuals, and his advice for those living with long COVID.
Being Patient: Tell us about how your team first became interested in studying COVID-19.
Dr. Robert Wilson: We’re two years into this pandemic and there are some rising numbers. But we always knew as neurologists that viruses can do a lot to the nervous system from different mechanisms: direct injury, inflammation, post inflammatory issues.
We knew when this pandemic started in February, March of 2020 that we’re going to see things, so we were very alert … Then something really happened in Fall 2020. People came in suddenly in large numbers, [saying], ‘I had COVID … It wasn’t so bad, but I can’t think. I’m not able to finish my schoolwork, my daily work. I’m having thinking issues. I’m very fatigued. [I’m] often dizzy, lightheaded [and I] can’t exercise.’
Being Patient: What do you tell patients at that point?
Dr. Robert Wilson: The most important thing is [to] respect what people are going through. Many people are really searching to be listened to or believed … Often, I ask people, ‘What is your fatigue?’ It’s hard to describe. They’ll say, ‘I just can’t get through my day, my work, my chores, my exercise. I can’t take care of my kids as well. I can’t get my job done.’ Then they’ll [speak of] the other symptoms: dizziness, lightheadedness, muscle pain, body pain, headaches …
These symptoms can be very confusing, not confusing to the person going through them — they want a diagnosis, they know what they’re going through — but they’re confusing often to medical providers.
When you’re feeling brain fog or can’t think or fatigued, they’re nonspecific. You can’t localize it or say it’s really registering to a certain part of the body … Someone breaks their arm, you can see this. But someone comes in and says, ‘I’m dizzy. I’m weak. I’m lightheaded. I can’t walk. My legs feel wobbly and my thinking is off. I feel very unsettled after having COVID.’ That can be what’s called non-specific or non-localizing …
It sometimes requires time with people, belief in people and some skill to sort out [these symptoms].
Being Patient: What is long COVID? Is there a consensus in the medical community regarding what long COVID is?
Dr. Robert Wilson: [Long COVID symptoms] are basically symptoms that are occurring weeks to months after COVID infection … Generally, … most of the symptoms should recover within two months after infection. If things are lingering, not like fever or sore throat, we’re talking more about the global body symptoms like brain fog, shortness of breath, difficulty breathing, muscle aches, can’t function, [dizziness and] lightheadedness, pass two [or] three months, [then patients may have long COVID] …
These definitions are very arbitrary … and over time, we may change [them] to a shorter interval.
Being Patient: People with COVID-19 can develop a condition known as postural orthostatic tachycardia syndrome (POTS). What is POTS?
Dr. Robert Wilson: It is an inability to have neurologic control of your blood pressure. People don’t realize how much your blood pressure is neurologically controlled. There’s different mechanisms from the body that can lead to [POTS].
When people go through it, typical symptoms are you stand up, get very dizzy, lightheaded [and] woozy. People’s hearts will race … up to 120, 150 beats per minute when they stand. Again, fatigue is the most dominant symptom. [Another symptom] is brain fog: can’t think, impairment of cognition, memory issues.
[POTS] is sometimes misdiagnosed with anxiety disorders because there’s also [symptoms like] [feeling] jittery, sweating, poor sleep. Again, [people] really struggle to go through their day, [and] experience] exercise intolerance, [poor] work performance. Again, these [are] vague symptoms, but very important to figure out for people. About 10 percent of POTS patients, in general, faint also.
Being Patient: What’s the relationship between long COVID and POTS?
Dr. Robert Wilson: Long COVID is basically this constellation of syndromes [and] people are not recovering. POTS’s probably one of the factors or syndromes as to why people are not recovering.
If you have a million people with long COVID, we don’t know what percentage [of them has] POTS … but there’d be many different factors, many different syndromes or conditions that are leading to long COVID.
It would be great if we could actually look at everybody who has long COVID, and study and analyze what percentage [of them has] POTS, and of those POTS patients, how many of them have other syndromes that are causing their long COVID?
Being Patient: Aside from COVID, what medical conditions are linked with POTS?
Dr. Robert Wilson: Mononucleosis, mycoplasma, other viruses, bacteria, some autoimmune diseases like sjogren; neuropathy, celiac, head injury (concussion is a big factor), chronic health issues, ehlers-danlos (a genetic hypermobile condition), post pregnancy. [For] some people, we don’t always know the cause, which always raises concern about genetic susceptibility that we don’t know about.
Being Patient: Tell us about your research in COVID-19.
Dr. Robert Wilson: What we’re trying to do with our research is to do some pattern recognition, look at … people who were functioning, and [the changes they experience after COVID infections]. We’ve had people who had COVID; they were highly competitive athletes, but [with] COVID and this POTS syndrome. They can’t control their microcirculation. Their heart rates [are] in the 140s. They’re dizzy, lightheaded, fainting and [experiencing] brain fog.
In our registry, patients have had mild COVID. Most of these patients were home, never hospitalized. They functioned pretty well with their COVID. They were still working remotely at home or some even tried to exercise, and often they recovered from COVID and these symptoms kicked in one or two weeks later, which shows that the body maybe revved up other [responses].
The majority of these patients were women. In our registry, 90 percent were women, young women — 20 to 50 some years old. Often, women have a very high inflammatory response. We see much more inflammatory diseases in women, which may speak of their body [possibly having] a more pro-inflammatory response [to COVID].
Being Patient: Do you have any advice to offer for people living with long COVID?
Dr. Robert Wilson: You just can’t lose hope. That’s probably one of the most important things. When people don’t feel well everyday, they can’t lose hope, and it’s easy for [me] to say this as a physician … It takes a lot in yourself to really pull yourself up and try to feel hope. It’s a big ask: asking people to feel hope when you feel so lousy.
“A lot of people’s lives have just been ripped
apart in this process. You can’t give up. You got
to try to choose that hope and then
find resources, if you can, in your area.”
A lot of these people have a lot stripped from them, [like] their jobs [and] family. People don’t believe them. They stop believing [in] themselves, their future. They stop believing in everything and they got to have hope in the present, in the future. They really got to consciously choose that things can be different.
Then, try to find someone medically who will listen to them and help them. There’s [COVID recovery clinics]. Whatever your area has for you, please be seen. There has to be resources for you there to help you out.
Many people’s lives have been just an upheaval. Maybe it’s not COVID POTS. Maybe it’s something else going on. But a lot of people’s lives have just been ripped apart in this process. You can’t give up. You got to try to choose that hope and then find resources, if you can, in your area.
The interview has been edited for length and clarity.
Contact Nicholas Chan at firstname.lastname@example.org