New Research on Long COVID

CHRISTIANE AMANPOUR, CHIEF INTERNATIONAL ANCHOR: This month marks the third anniversary since coronavirus became a global pandemic and the world went into lockdown. But still, millions of people suffer the symptoms of long COVID. A condition that doctors are desperate to understand. Well, in a new piece for the “Scientific American,” neuroscientist Stephani Sutherland says that long COVID now looks like a neurological disease. And she speaks to Hari Sreenivasan alongside Tara Ghormley, a woman who’s struggling with that condition.

(BEGIN VIDEO CLIP)

HARI SREENIVASAN, CORRESPONDENT: Christiane, thanks. Stephani Sutherland, Dr. Tara Ghormley, thanks so much for joining us. Stephani, I want to start with you. Here we are three years out and we’ve had multiple conversations about long COVID. What have we learned over the past couple of years? What are the scientists that you have been talking to think is causing this?

STEPHANI SUTHERLAND, NEUROSCIENTIST AND JOURNALIST: Long COVID only started to become realized by doctors and researchers over the months in 2020 and particularly towards the end of 2020 as millions of people started to complain about symptoms of long COVID. What we do know now about long COVID is that it seems to be a post viral syndrome. So, unclear exactly what is causing it, but like many other post viral syndromes, it has many different kinds of manifestations. So, over 200 different symptoms have been described of long COVID. Many of them — as I write about, in a piece in “Scientific American, many of them being neurological.

SREENIVASAN: Give us an idea of how or why scientists think that this is neurological, because for so many people they are aware of the physical manifestation. What are the indicators that scientists have looked at that say, this is actually affecting the nervous system and the brain?

SUTHERLAND: The short answer is that we don’t have great markers or biomarkers or biological readouts like we would for things like cancer or lung disease and some of the respiratory effects of COVID-19. What was — what did become really clear and obvious, as I mentioned, especially towards the end of 2020, was that millions of people, all at once, during the pandemic, after having had COVID-19, were complaining of really neurological symptoms. So, things many of which Tara is living with, things like postural orthostatic tachycardia syndrome, which causes a racing heart and it really keeps you from being upright, and things like post exertional malaise, where people will have kind of an energy crash after expanding mental or physical energy. And those seem like physical manifestations, but those two can be rooted in the nervous system. And then, other things like brain fatigue, severe brain fog, severe fatigue, things like loss of smell and taste and other things like pain, hypersensitivity to sound and other sensations that clearly are rooted in the nervous system somehow.

SREENIVASAN: So, Tara, let me come to you here. When did you know that this wasn’t like the flu, that — I mean, you are were of the first people to get it in California in March of 2020, but you’re also someone who has a medical background. You are trained as a veterinarian. So, when did you figure out there was something wrong with me here that’s beyond just, you know, what most people are getting as the Symptoms of COVID?

TARA GHORMLEY, LONG COVID PATIENT: I remember that I just never got better. I spent a week in the hospital and was discharged, then was told, oh, in two weeks you will feel better. Two weeks came and went, I didn’t feel better. And as the weeks went by, I continued to have symptoms and asked my doctors, and they were very honest and said, we don’t know if this is normal or not. We don’t really know what we are dealing with. It’s so very early in this new disease. And as time progressed, I developed new symptoms, and these are symptoms that I didn’t have before I got COVID or even when I got COVID. Things like really bad memory issues, difficulty finding words, like Stephani said, sensitivity to sound. And when I started finding out that other people were having these symptoms as well, then something clearly was going on.

SREENIVASAN: How did this impact your life at the time? I mean, having all these symptoms seems just physically debilitating.

GHORMLEY: Very much so. I was out of work for several months. And all — basically, all through the summer of 2020 and into the fall, and even then, when I started back to work, still took a lot out of me. Still really — and still do, have to do things to adapt. So, a lot more writing things down, a lot more taking breaks when I can. A lot more concentration on my sleep. So, even still to this day it impacts me. But I, like I said, was out for multiple months before I could even think about going back to work.

SREENIVASAN: Stephani, one of the things that Tara is describing, which seems so difficult, is if there are 200 different symptoms, how does a doctor know that it’s the COVID that is behind this?

SUTHERLAND: One of the things that doctors are dealing with that make it very difficult to treat long COVID is exactly what you said. We want to make sure that something else isn’t going on. So, many people, and especially presented with neurological or cardiovascular symptoms, they have to run all kinds of tests to make sure that something else is not going on or that there wasn’t a pre-existing condition that might have led to this. And really, the only reason that it has become clear that COVID is the trigger for these many symptoms is that so many — you know, millions and millions of people are turning up with these symptoms in the wake of having acute COVID kind of in these last couple years.

SREENIVASAN: Stephani, is there anything that these patients have in common or are there things that make you more likely to get long COVID?

SUTHERLAND: So, there are some risk factors that seem to be emerging, which are also a comment to some other post viral syndromes. It does not seem to be the case that the most severe cases necessarily develop long COVID. Many people have a mild case, sometimes even asymptomatic cases. Hospitalization does seem to slightly increase the risk. But interestingly, among people who were not hospitalized, the risk is greater among younger adults than elderly people. Women are definitely at greater risk than men. Many more women are developing long COVID. And there are some risks from pre-existing conditions, such as auto immune disease seems to be a big risk. Also, things like obesity and smoking that might expect. But really, women and younger people seem to be at greater risk, which is very surprising.

SREENIVASAN: So, Stephani, what are the long-term implications to our health care system if we have this new population that, on the one hand, isn’t healthy, but on the other hand, are also not sort of fully functioning contributors to our society, our economy, our culture, and everything else?

SUTHERLAND: Yes, I have to say that I can give credit to the patients lead advocacy groups who are really sounding the alarm about this. Government officials are maybe kind of slowly coming along to realize what an event this is. Patient groups will call it a mass disabling event. I will say the National Institutes of Health, the NIH, has now ramped up efforts in funding to study this problem. But in terms of caring for these tens — or what will that about being tens of millions of Americans, again, this is just in the U.S. alone, yes, it’s a massive gap and we need to address it because we will have many, many people disabled. And some people, like Tara, has been living and suffering with this disease now for three years, since March of 2020. Some people do get better after a few months, some people maybe get better and then, will have a flare-up. But there is a smaller number of people who seem to be really dealing with this in a long-term way for years.

SREENIVASAN: Tara, what was the breakthrough? I mean, when did you feel like, OK, this doctor or group of doctors gets it and something is starting to work? And what is working?

GHORMLEY: The breakthrough that we first had was when we discovered the pots, the postural orthostatic tachycardia syndrome, that Stephani mentioned, as the cause of the persistent difficulty breathing. My heart rate would shoot up really quickly and we actually caught that on a heart monitor. And that was never caught any place else. My heart ultrasounds were always normal. My EKGs in the clinic were always normal. But the moment I would stand up, get up from sitting or lying down, my heart rate would spike. And that was the first time that we actually found something that was really abnormal and my cardiologist actually recognize this very early in the kind of long COVID before for a lot before a lot of people were being diagnosed with this syndrome. So, she put me on some medications that happened to help quite a bit. So, the heart medications have worked a lot, really controlling my heart rate. Some of the symptoms that I get with that. I also have — I am also on low dose Naltrexone, which is a medication that can help fatigue, sometimes pain, sometimes brain fog. That seems to help. And then, I also developed some mast cell disease from this, from COVID. And started some medications for that, that also have been very helpful.

SREENIVASAN: So, what has this kept you from in your life now?

GHORMLEY: Unfortunately, there’s a lot of difference and I’m kind of having more trouble remembering pre-COVID than post COVID at this time because it has been going on three years. Definitely work has been a lot more difficult. I had to leave my clinical job because of it, which I never thought I was going to have to do. It was something I never imagined. And still have difficulty doing things like going out dancing with my friends, which I used to do all the time. Things like that will just tire me out. I am able to do certain things with disability help. So, things like going to theme parks, they actually have the ability for people with conditions like mine to kind of not have to stand up as much. And so, it does allow me to at least enjoy some things that I did beforehand. But there’s definitely still a big difference from pre-COVID to currently.

SREENIVASAN: Stephani, I also wonder if there’s a gender disparity here in how patients are believed and seen by doctors when they present with this, because even before COVID I would hear complaints from women I know that, I just can’t get the doctor to take me seriously about this.

SUTHERLAND: Yes. No, that’s definitely another aspect of long COVID, that it does affect many more women than men. And as you say, traditionally, historically, you know, we are rooted in that old hysteria concept where women are not believed, they may be gaslit, and it is a huge problem. And, you know, I think that one thing about long COVID is that because so many millions of people got sick with COVID-19 at the same time, and people all started to develop this long COVID in 2020, it was really hard to ignore the length. It was very clear that this was a post viral illness. And I just want to mention, this is similar. There’s a lot of overlap between long COVID and the condition called myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS, which also affects many more women than men and also really was treated as something that, even very recently, that doctors maybe didn’t believe existed and many women have really suffered with it. Because it’s also a post viral illness, but it didn’t arise during a global pandemic, it’s really hard to pin down when people might have developed it or when the viral infection may have happened. So, in that condition, it had very little attention or research, and the hope is that all this intense research onto long COVID will also kind of pay some dividends, pay some benefits to help better understand chronic fatigue and other post viral illnesses that are still really quite mysterious.

SREENIVASAN: Tara, can you tell me a little bit about how you think your brain is doing, so to speak? I mean, I know that when you — early on in this process, you had sort of a cognitive tests that you were given and you took them again. Can you see an improvement and — or what’s still lacking?

GHORMLEY: I actually do have a slight improvement now. When you take cognitive tests they — it’s not just you fail or you pass, it is really something that they kind of compare against your age group and your education. So, normal for one person is not necessarily normal for somebody else. But the deficits where I was abnormal for me, some of those have improved a little bit, but I definitely still have problems, things like memory, learning. So, word processing speed. So, it just takes me a little bit longer than it used to. Especially auditory cues. So, we just went over that. Certainly, something that I’m still able to be high functioning in veterinary medicine, but I just have to do a couple of other things just to make sure that I’m able to remember things better than I used to be able to.

SREENIVASAN: Stephani, has there been ran any kind of treatment that has been working for a large subset of the population? I know that so many ofmthese folks have different symptoms. But are there any treatments or therapies that scientists are interested in or excited about, even if it’s kind of off label, something that’s developed for a different syndrome?

SUTHERLAND: The only way that doctors can treat long COVID right now is kind of symptom by symptom. And so, whether it’s a cardiovascular symptoms, and as she mentioned, also some people are receiving medications that are typically used for attention deficit disorder, for example, that might help them get through their brain fog a little bit better and other things like low dose Naltrexone for pain or fatigue. But there really is no treatment right now for long COVID, as a whole. Researchers still are trying to figure out what is the underlying cause? What is still going on? How is the virus still affecting the brain and the body and the whole nervous system? I will say, their — our clinical trials ongoing for Paxlovid, the antiviral treatment, with one of the thoughts is that there may be small pockets or even just pieces of the virus persisting in the body and that antiviral treatments might help clear that out. So, those trials are ongoing. But in terms of a treatment or a cure, we still are in the early days, unfortunately.

SREENIVASAN: So, having done all this research, Stephani, what is the thing that you would tell patients of this disease that might not yet be diagnose that they have long COVID and what should they do? What kind of doctors should they seek?

SUTHERLAND: Yes. As we’ve been talking about, the gap is really large in terms of the care that is available for these patients. What I would say to patients is, this is real and I hope that everyone can find a doctor. What I really would say to physicians is, please, believe your patients, because this is a neuro immune disorder. It is not a psychological disorder, it’s not psychosomatic, it’s not something that people are unsure about. You know, this is a very real physical disease that, for many people with neurological symptoms, is rooted in the nervous system but can affect many other systems of the body as well. And just to — you know, don’t give up and know that this is a real thing.

SREENIVASAN: Tara Ghormley, same question to you, what would you say to other people out there who might find themselves in your medical shoes, so to speak, or at least in the types of symptoms that they are having?

GHORMLEY: Like Stephani said, these symptoms are real and if you don’t have a doctor that believes you, you need to find a new doctor. And I know sometimes that’s easier said than done, but there are doctors that will help you, I promise. Just be hard to find, unfortunately. And other things that have really helped me, the main thing, I would say, is to find a support group. And there are online support groups. There is also Facebook support groups. And you will find other people who really have the same symptoms and you read everything about people getting better in six months, and you’re wondering why you’re still sick, there’s a lot of us out there that are, unfortunately, still battling these symptoms. And so, finding other patients that have the same symptoms or are battling the same thing is actually very, very helpful, and did help me quite a bit, kind of normalize what I was going through.

SREENIVASAN: Tara Ghormley, veterinarian and long COVID patient, and Stephani Sutherland, neuroscientist and journalist, thank you both so much for your time.

SUTHERLAND: Thank you.

GHORMLEY: Thank you.