What scientists understand least about COVID-19 are its long-term effects. Conventional wisdom says most cases are mild and the infection lasts about two weeks, but some people have been dealing with serious symptoms for a lot longer.
Cliff Morrison is a health care administrator in the Bay Area and has been experiencing symptoms for months. He’s participating in UCSF’s two-year study on the long-term effects of COVID-19.
KCRW: When did you first get sick, and when were you first diagnosed?
Cliff Morrison: “I started with what I thought was a really severe allergy attack, because I've had chronic allergies my whole life, around the last week in March. And the first week in April, I realized if this was allergies, it was the most serious that I've ever had. But I had never spiked a temp [temperature].
Then on April 8th, I came to work and I just felt terrible. I felt like I'd hit a wall and realized that I probably needed medical attention. So I called my doctor and he was able to see me that afternoon. And he immediately diagnosed me from just examining me and seeing the symptoms that I had.
And by that time, my temperature was almost 102. And I was in that crisis mode for clearly four to five weeks.”
What were some of the other symptoms?
“Blurred vision. I couldn't read. I could barely get out of bed. I had absolutely no appetite. There were times when I was completely delirious. Actually, I don't remember a lot of what happened during that period because I was home and I was alone. But I had a lot of support around me.
And it was a fairly miserable time. I went for several days being truly delirious and really didn't know what I was doing. But I put up a good enough front that the people who were checking on me didn't realize it was that bad.
... During the whole month of April until like the first week in May, I was seriously ill. And there were several days, probably at least seven or more, that I simply do not remember anything.”
When did you come out of it? When were you cleared and tested negative?
“I began to feel a little better, not significantly, but I knew that I had passed the crisis point by the first week in May. And the second week in May, I was able to get retested and tested negative on May the 12th.”
It’s the end of July, do you still have serious symptoms?
“Yes. I was out of work for three months, and the last couple of weeks started working again. It's been quite a challenge. I do still have a lot of residual symptoms. I still have issues with vision. I tire very easily. I still have shortness of breath.
And unlike when I was actually seriously ill, I now have really serious headaches, two or three times a day, that feel almost like mini-migraines. They come on very, very suddenly and last anywhere from 20 minutes to an hour. And sometimes I'll have two or three of those a day.”
What have your doctors said about whether or not the symptoms will eventually clear up?
“Well, they don't know. Luckily for me, because I've worked in the University of California system for most of my career and at San Francisco General Hospital, they asked me to join the UCSF COVID study, which is a two year study where they're looking at several hundred people like myself.
I go in every month. They take samples, and they give me a complete examination, and they assess exactly where I'm at. And so that's been extremely helpful, and I'm so glad that I was able to get into that study.
It's also been reassuring because I felt really bad after the first month being ill. Because everything that I was reading and seeing in the media was what everyone else was ... this was a 13-19 day deal, and that I should be coming out of it. And I began to feel guilty and was wondering if friends and colleagues were thinking, ‘Is this guy really just sick? Is he malingering or what's going on here?’
So it was reassuring to me when my doctors began to tell me, particularly after I joined the research group, that my case was not unusual, and that a lot of people actually had lingering symptoms that at that point, they were telling me would go on for at least three months.”
But nobody knows how long symptoms will last, which is why there's a study happening.
“Yes, that's true. I'm optimistic and hopeful that these symptoms will clear up. Right now, one of the major things for me is antibodies. I've been tested for antibodies now, three times. I haven't gotten the results back from Tuesday's antibody test. My antibodies have probably dropped off considerably at this point.
Are the antibodies protecting me? If they are, for how long? And would I be a prime candidate to contract COVID-19 again perhaps in the second wave? And I hope not, because I truly don't don't think that I could survive a second bout of it.
But those are all things that we don't know at this point. And hopefully that we'll find out more as the research continues, and we have more experience in dealing with the pandemic. … It’s truly been a trying experience. But … people around me, the people I work with, my friends, my neighbors, I couldn't have asked for more support. People have been absolutely wonderful.”
KCRW also speaks with Dr. Michael Peluso, clinical fellow at UCSF’s School of Medicine who’s conducting a two-year study on the long-term effects of COVID-19.
KCRW: How common is Cliff Morrison’s story? Even after testing negative, he had persistent symptoms, including daily mini-migraines, exhaustion, shortness of breath, blurred vision.
Dr. Michael Peluso: “Cliff's story is not unique within our cohort study. Cliff is about one of 100 patients in the study so far. And I would estimate that somewhere between 15 and 20% of our participants are experiencing such symptoms.”
Do the study participants have other common attributes? Are they in a particular age group? Do they have pre-existing conditions? Cliff Morrison is 69 and has hypertension.
“Yeah, I think one of the most remarkable things to me about this illness is the really great variability between individuals in terms of their experiences. So there's not really a clear pattern that we're seeing so far in terms of the type of person who develops prolonged or recurrent symptoms from COVID.
… Some individuals who have such symptoms were hospitalized. Some individuals like Cliff were quite sick but not hospitalized. And other individuals who have persistent symptoms would really be considered to have had mild or moderate symptoms during their initial illness.
So there's really a lot of variability that we're seeing in terms of the initial presentation that people had and their longer term symptoms. And there's also not really a clear pattern that's emerged yet in terms of age group, presence of other comorbidities, or other demographic factors at this point.”
What is the hypothesis as to why these symptoms are presenting and how they're presenting? Is it the disease itself, or is the immune system going into overdrive?
“Both hypotheses are at play. … There's just tremendous variability in the individual experience of each patient or each research participant. And it's possible that some individuals with a certain spectrum of symptoms might have symptoms due to one cause, whereas other individuals with a different spectrum of symptoms might have those symptoms due to a different cause.
I think that both of those theories are things that we're working on. … It's possible that there could be factors that preceded COVID, or factors related to the initial infection … that could determine whether they have ongoing symptoms.
And it's also possible that in a subset of individuals, there might be a more robust inflammatory response or some difference with regard to the immune response that could explain those symptoms. So that's actually something that we're actively working on this summer to try to see what the biological and immunological correlates of those symptoms might be.”
Are you seeing potential long-term or permanent damage to the organs, such as lungs?
“We haven't looked at that yet. But as part of our parent study, there are a number of different sub-studies that participants will have the opportunity to take part in.
So for example, we will be doing different sub-studies that are focused on the nervous system … to figure out if there are biological correlates of the concentration, memory, brain fog issues that some people are experiencing.
We'll be doing a deeper dive into cardiology, and looking at whether there are any long-term effects on heart function. And similarly for pulmonology, we'll be looking at whether there are any long-term effects on lung function.
We don't have results with regard to those things yet. But … my colleagues in the more clinically-focused space are starting to gain some expertise in seeing patients who were referred to them who have prolonged or recurrent symptoms.
And I think that over … the next four to six months, we as a group of physicians will have a much better sense of what the underlying causes of these are, and how best to manage them.”
Cliff Morrison says his antibody levels are quickly dropping. Is that surprising?
“There's been recent data from other groups that we've seen also in our participants — that antibodies do tend to wane with time. We don't yet know what that means. And it's important to understand that the immune system is much more complicated than just antibodies.
I like to think of the immune system kind of as a symphony. And the antibodies are the flute section or the cello section. And so the immune response is much more complex and coordinated than just the contribution of antibodies. And we're looking at many other arms of the immune system and this study. I think it'll be really informative to understand whether it's just the antibodies that wane over time; whether that means that people's immune system is less responsive over time; or whether the coordinated response, which relies on lots of other things, particularly immune cells, persists over time.”
But being reinfected with COVID-19 is possible.
“Yeah, we just don't know at this point in time. I think it's certainly possible that immunity could wane, and that could put people at risk for reinfection.
So the advice that I give people in our study who … definitely had COVID … they should protect themselves in the same way that everybody else is being asked to protect themselves. I wouldn't take anything for granted right now — until we know more.”
— Written by Amy Ta and Jennifer Wolfe, produced by Brian Hardzinski and Nihar Patel