FULL EPISODE: 12/19/21 Survivor Corps’ Diana Berrent, Long Hauler Donna Talla & Dr. Catherine O’Neal on Long COVID

Published: Dec. 18, 2021 at 7:04 PM EST
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Washington, D.C. – Greta Van Susteren interviewed Dr. Catherine O’Neal, Chief Medical Officer of Our Lady of the Lake Regional Medical Center in Baton Rouge, Lousiana; Diana Berrent, founder of Survivor Corps, a grassroots patient advocacy and support group for those affected by COVID-19; and COVID long-hauler Donna Talla on the long-term effects of coronavirus infections for Gray TV’s “Full Court Press with Greta Van Susteren” airing Sunday, December 19, 2021.

Dr. Catherine O’Neal told Van Susteren that many people with long COVID didn’t even know they’d had the virus. “We see that more and more, especially in our 20 to 30-year-old population and especially in women,” says O’Neal. “They’re susceptible to having a mild illness, almost not recognizable, and then long hauler symptoms later.”

O’Neal said long COVID symptoms include brain fog, autoimmune disorders, myocarditis, and cerebritis, a brain disease that can lead to long-term seizures. But, said O’Neal, studies have shown that vaccinated individuals are “eight times less likely to develop long hauler syndrome.”

Survivor Corps founder Diana Berrent, whose grassroots organization has brought together more than 180,000 people affected by COVID, says “some of the worst cases of long COVID can come from the most mild infections, even asymptomatic infections. And one of the most maddening parts of it is that there is no typical case of long COVID. It presents as a constellation of symptoms.”

Covid long hauler Donna Talla said she still suffers from pain, fatigue, and a rapid heart rate since contracting COVID early in the pandemic. “They say you never think it would happen to you. Well, it happened to me. I’m an advocate out there for the research and for people getting vaccinated because I think that everybody wants to get back to a normal life at some point. I hope that we have that in our future.”

Interview excerpts are below.

Dr. Catherine O’Neal Highlights

Greta Van Susteren

Doctor, does anyone really get over COVID?

Dr. Catherine O’Neal, Chief Medical Officer, Our Lady of the Lake Regional Medical Center

For COVID, there is so much that happens during that illness that you can definitely say everyone is affected.

Greta Van Susteren

If you have COVID and you have no symptoms whatsoever, can you discover some way down the road that suddenly you have symptoms so that you’re almost like a long hauler having maybe even not even recognized that you had COVID in the first place?

Dr. Catherine O’Neal, Chief Medical Officer, Our Lady of the Lake Regional Medical Center

You absolutely can. Imagine you have symptoms that you brush off. We say no symptoms whatsoever, but there are so many people who have such mild symptoms: A day or two of headache, a day or two of congestion … But for some reason about six weeks later you end up in your doctor’s office because you’re weak every time you get up from the couch, you can’t run like you used to, maybe it’s just very difficult to fold your kids’ clothes at the end of every day. You say hey, something’s going on, and we check your antibodies and you have COVID antibodies. So you are now a long hauler, never really having made a really good connection between those symptoms and what’s happening now. We see that more and more, especially in our 20 to 30-year-old population and especially in women. They’re susceptible to having a mild illness, almost not recognizable, and then long hauler symptoms later.

Greta Van Susteren

People get COVID and it can linger into long COVID. Why is that? Why is it that you can still be sick a year from now?

Dr. Catherine O’Neal, Chief Medical Officer, Our Lady of the Lake Regional Medical Center

There are a couple of reasons and it depends on the person. Not everybody’s going to take their COVID the same and some people will just get COVID and get over it. That’s going to be the majority of people. But when you’re talking about millions of people at one time, there’s a significant amount of people who will either have severe disease, so it just takes longer to get over, have some organ infected. For instance for people who do have neurologic complications of COVID, sometimes their COVID was not severe, but if it made it into their brain or if their brain mounted an immune response, meaning the cells in my brain said “I don’t like this virus here and I’m going to just start making inflammation,” you may have long-term headaches, long-term nerve pain, we see that a lot even in mild conditions.

Dr. Catherine O’Neal, Chief Medical Officer, Our Lady of the Lake Regional Medical Center

Then there is this very interesting from a scientific standpoint phenomenon where we actually start to make antibodies against ourselves. Our antibodies came to the forefront, they were confused. Maybe we weren’t vaccinated and so this is the first time they see COVID, and then they start to fight our own bodies, and you’re left after COVID with an autoimmune disease. We have known that happens with other viruses and now we’re seeing that with COVID, where people begin to fight themselves, myocarditis, cerebritis, meaning brain disease, and that can lead to long-term seizures. Lots of things from developing an autoimmune inflammatory disease after a virus.

Greta Van Susteren

Survivor Corps is a lot of people who are not doctors but who have had COVID. They’ve put all their information, they’ve pulled all their information, anecdotal information. Has that been helpful?

Dr. Catherine O’Neal, Chief Medical Officer, Our Lady of the Lake Regional Medical Center

I think so. I think that any information at this point is helpful. Now, sometimes the information guides us down a rabbit hole and we have to back out and say do we have all of the information we need? But any database that’s giving us large amounts of data tends to be very true.

Dr. Catherine O’Neal, Chief Medical Officer, Our Lady of the Lake Regional Medical Center

Hearing from survivors, hearing their struggles helps us as clinicians say, if you come to me as an infectious disease doctor post-COVID and have symptoms, there’s not a whole lot of medicine that I have for you. But hearing what helps in survivors makes me more likely to refer you to physical therapy, to refer you to a gym. Makes your insurance company more likely to pay for those things because now they know that those are the things that got people back to work and that’s very important. So we’re learning a lot, but just learning as we go.

Greta Van Susteren

Some people’s heart races very fast, runs very fast from COVID. Is that something a long-term or do we anticipate that, that was something that we’re going to conquer, that you’ll grow out of over time?

Dr. Catherine O’Neal, Chief Medical Officer, Our Lady of the Lake Regional Medical Center

We do think it’ll fix over time. That postural hypertension is something that or postural tachycardia, POTS is something that you do adjust to over time, and you can do certain mechanisms. You can go to physical therapy, you can drink more water and you start to feel better, but it’s an adjustment. You asked at the beginning of the interview do people get over it? People like that yes, they get over it, but they have had to add on a whole layer of healthcare just to feel better from a virus.

Greta Van Susteren

But if your heart’s racing like crazy, if it’s racing at 115, 120, you don’t feel good.

Dr. Catherine O’Neal, Chief Medical Officer, Our Lady of the Lake Regional Medical Center

No.

Greta Van Susteren

You’re not going to feel good at all.

Dr. Catherine O’Neal, Chief Medical Officer, Our Lady of the Lake Regional Medical Center

That’s right.

Greta Van Susteren

I’ve heard people having brain fog, I take it that’s a real thing. Is that something that you will get over after a while, is there some way to correct it? What is brain fog?

Dr. Catherine O’Neal, Chief Medical Officer, Our Lady of the Lake Regional Medical Center

We’re not quite sure. Again, it’s probably one of the two. Either it’s that over-inflammation in your brain. Your brain saw the virus and decided to start making some sort of inflammatory response that’s not normal because your body hasn’t practiced. That’s why we want vaccinations … The more I practice ahead of COVID the less likely I make this haywire response. But if I get the infection de novo and I make a haywire response, sometimes my brain just slows down, I feel tired and fatigued.

Greta Van Susteren

Does the vaccine though, does it likely mean that your brain fog will be less serious or that you’re less likely to get it?

Dr. Catherine O’Neal, Chief Medical Officer, Our Lady of the Lake Regional Medical Center

Both. Interestingly enough, you are just far less likely to get COVID altogether if you get vaccinated. Now say you’re vaccinated and then you get COVID, you are less likely in fact, eight times less likely to develop long hauler syndrome if you’ve been vaccinated before you get COVID.

Dr. Catherine O’Neal, Chief Medical Officer, Our Lady of the Lake Regional Medical Center

This is what’s so interesting, in about 250,000 people who were studied who had the vaccine and also had COVID around their vaccine, people who got the vaccine within 12 weeks of having COVID, so I got the infection and then I got vaccinated, they were less likely to go on to be long haulers. Vaccination helped that group even if they got it after the disease, which is incredible and not something that we’ve seen in other diseases before, but we haven’t studied them as well as we’ve studied this.

Greta Van Susteren

What’s the future of something like that? If you’re a young person what’s the future?

Dr. Catherine O’Neal, Chief Medical Officer, Our Lady of the Lake Regional Medical Center

The future is physical therapy, seeing a doctor when you shouldn’t be seeing a doctor at your age, but ultimately getting better, but having a several years’ illness that you had to work yourself out of instead of just continuing on and enjoying your life.

Diana Berrent Highlights

Greta Van Susteren

At what point are you a long COVID survivor?

Diana Berrent, Founder, Survivor Corps

Basically anyone who is six weeks past diagnosis and is still having lingering symptoms. And might I add that some of the worst cases of long COVID can come from the most mild infections, even asymptomatic infections. And one of the most maddening parts of it is that there is no typical case of long COVID. It presents as a constellation of symptoms. A standard constellation, but wide with each person having a very unique subset.

Diana Berrent, Founder, Survivor Corps

So everything from extreme neuropathic pain that mimics advanced diabetes. We are seeing people with Parkinsonian-like tremors, feelings of inner vibrations, strokes, heart attacks, COVID-onset diabetes, COVID-onset lupus, you name it. It is really, really frightening.

Greta Van Susteren

The medical community, who are you working with or who has reached out to Survivor Corps – Who’s using your wealth of anecdotal information?

Diana Berrent, Founder, Survivor Corps

We have managed to forge partnerships with public and private institutions. We’ve put out multiple papers with Yale University. The last one, just recently on these Parkinsonian-like tremors and feelings of inner vibrations that are keeping people from sleeping. We just discovered that it was a symptom that was causing the most human suffering and grief. And we brought it to the scientists at Yale and said we need to understand this. There are too many people suffering.

Diana Berrent, Founder, Survivor Corps

We are partnered with the Mayo Clinic. We’re partnered with Yale. We’re partnered with private companies. Anyone who we think is going to push the needle, we are partnered with.

Greta Van Susteren

How has medical insurance responded to the long COVID?

Diana Berrent, Founder, Survivor Corps

It’s been a difficult path. I’m happy to say that we finally have an ICD code. So there’s actually now a diagnostic code as of the end of October for long COVID.

Diana Berrent, Founder, Survivor Corps

There is definitely a gulf between the regulations and the policies and real world.

Greta Van Susteren

So to get the insurance code, was that largely patient advocacy and organizations like Survivor Corps?

Diana Berrent, Founder, Survivor Corps

Correct. Correct. It was really just CMS. It was the government dragging its feet on something that was just a bureaucratic issue that needed paperwork. It was not something that needed such heavy lifting. There’s been a lot of movement in the government towards supporting long COVID, but again, it’s where the rubber meets the road. So Congress gave $1.15 billion to the NIH last February to study long COVID. The NIH is still sitting on that money. I sit on their recover committee and not a penny of it has been dispersed …

Greta Van Susteren

Why, why?

Diana Berrent, Founder, Survivor Corps

Because they are spending their time planning and they are looking towards pheno-typing, towards trying to figure out how do we make sure that we are not including the wrong things under this umbrella of long COVID. And they’re so concerned about that, that they’re forgetting that there are 50 million Americans who are suffering every day and none of their research, none of this 1.15 billion is going to be aimed towards therapeutics.

Diana Berrent, Founder, Survivor Corps

People need treatments. People need hope. They are debilitated. They cannot go back to work. It’s going to have a massive effect on our economy. And we don’t yet know the full long-term ramifications. We haven’t seen anything. We’re only 18 months in.

Diana Berrent, Founder, Survivor Corps

I don’t know whether it’s the fact that that tends to hit more women than it does men. Men are more affected by acute COVID, women are more affected by long COVID and hopefully whatever research we are able to underway and whatever answers we are able to find will bring up every chronic disease community in its wake, because we all need to rise together.

Donna Talla Highlights

Donna Talla, COVID-19 Long Hauler

It’s somewhat better. I would anticipate that it would be a lot better almost a year later after speaking with you, but there’s good days and bad days.

Greta Van Susteren

What’s the shortcoming? Is it breathing or is it fatigue?

Donna Talla, COVID-19 Long Hauler

It’s both. It’s still the tachycardia. My heart races. The same as it did a year ago. It’s the fatigue. It comes and it goes. It’s just very unpredictable. Some days it’s better than others. I just try to capitalize on the good times.

Greta Van Susteren

You know, it’s so hard to explain to people who’ve never had COVID, even, you know how tough it is, this long haul. I look at you and you don’t look sick to me. It’s because I can’t see your heart beating, thousands of whatever the beats are. I can’t see that.

Donna Talla, COVID-19 Long Hauler

Yeah. We can feel it. I can tell you that. The muscle aches. The joint aches. The numbness that people experience. The heart-racing for no reason at all. The pains that you feel. I just continue to search for answers because I want to get better. I don’t want to live, and I don’t want to be labeled a long hauler. And that’s where I am.

Greta Van Susteren

Well, it’s your whole life is turned upside down, both financially and physically. It’s like one day you woke up and all of a sudden everything got turned upside down, something you couldn’t anticipate.

Donna Talla, COVID-19 Long Hauler

That’s exactly how it happened. They say you never think it would happen to you. Well, it happened to me. I’m an advocate out there for the research and for people getting vaccinated because I think that everybody wants to get back to a normal life at some point. I hope that we have that in our future.

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About Greta Van Susteren:

Greta Van Susteren is the Chief Political Analyst for Gray Media and host of Full Court Press. Ms. Van Susteren is a veteran of Fox News Channel, MSNBC, and CNN. Her prime-time Fox News Channel Show, “On the Record,” was number 1 in its time slot for 14 1⁄2 years. Before joining Fox News, she hosted CNN’s prime-time news and analysis program, “The Point with Greta Van Susteren,” and co-hosted the network’s daily legal analysis show, “Burden of Proof.” Her legal analysis for CNN’s coverage of Election 2000 earned her the American Bar Association’s Presidential Award for Excellence in Journalism. She continues to host the weekly 30-minute program “Plugged In with Greta Van Susteren” on Voice of America, which broadcasts exclusively outside of the United States.

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