The Hidden Toll of Long COVID: One Patient’s Story and the Search for Answers
Whitney Gibb used to move through life at full speed. After COVID, brain fog, fatigue, and memory loss reshaped her daily life — offering a powerful window into the realities of Long COVID and the research now working to understand it.
Whitney Gibb used to move through life at full speed.
Before COVID-19, she was active, social, and thriving in a medical device career that began in her mid-20s. She trained neurosurgeons on spinal procedures, exercised regularly, and kept up with a full professional and personal life. Then, after contracting COVID in July 2020 and later receiving a vaccine in 2021, her health began to change in ways she could neither explain nor control.
During a recent Pacific Northwest RECOVER virtual town hall, Gibb shared what happened next — a years-long struggle with Long COVID symptoms that transformed nearly every part of her life.
For months, she said, she felt as though she was searching for answers in a void. She was exhausted, forgetful, short of breath, and increasingly isolated. At a time when public understanding of Long COVID was still limited, she said she often could not find information that matched what she was experiencing.
“I felt really helpless,” Gibb said. “I didn’t have anyone to talk to about it because I felt like no one understood what I was going through.”
What followed was not a single symptom, but a cascade of them. Gibb described extreme fatigue, short-term memory loss, brain fog, post-exertional malaise, shortness of breath, hair loss, and GI issues. At one point, she said, she was taking up to three naps a day while trying to hold down a full-time job. Every day tasks became difficult. Work suffered. So did her confidence.
In one striking example, Gibb recalled returning from a work trip and receiving a call from a company she had met with just two weeks earlier. They were waiting for quotes from her. She remembered traveling to Wilmington, North Carolina, but could not remember the company’s name. She had no useful notes and no recollection of the details she needed to do her job.
In another instance, she spent two hours wandering an airport parking garage trying to find her car — and then realized she had lost her keys.
Those moments, she explained, were more than frustrating. They were disorienting and, at times, humiliating.
“The cognitive stuff is somewhat embarrassing,” Gibb said during the town hall. “I look normal, but nobody knows that it’s changed.”
Eventually, she found her way to Vanderbilt’s Long COVID program in Nashville, where she underwent extensive testing and began to get some answers. Over the next several years, she pursued treatment after treatment — cognitive therapy, lung therapy, books, supplements, IVs, exercise, support groups, and specialist visits — spending what she estimated was around $20,000 in the process.
Some diagnoses came into focus over time: cognitive impairment, delayed executive function, slowed processing speed, chronic fatigue syndrome, worsening ADHD symptoms, Hashimoto’s disease, fatty liver disease, and depression. She lost a job she loved. At her lowest points, she said, the suffering and uncertainty felt unbearable.
And yet her story is not only one of loss. It is also one of adaptation.
Gibb said cognitive therapy helped her develop strategies to manage memory problems and stay organized. She learned to write things down immediately, rely heavily on calendars and notes, and create systems for remembering names, plans, and details. Her lungs gradually improved. Over time, she was able to return to exercise. Today, she said, she feels about 80 percent better than she once did.
Even now, though, Long COVID continues to shape her daily life. Tasks that once took 30 minutes can take three hours — or six. Memory lapses still happen. Fatigue remains one of the most limiting symptoms.
“I do feel like I’m one of the lucky ones,” she said.
Her testimony formed the emotional center of the town hall, which also featured comments from ISB President Dr. Jim Heath, who leads the Pacific Northwest hub of the National RECOVER program, and Dr. Jason Goldman of Swedish.
Both emphasized that stories like Gibb’s are helping shape the next phase of RECOVER, a nationwide effort to better understand Long COVID.
RECOVER Cycle 2, set to begin this spring, will focus on how symptoms evolve over time, particularly in people experiencing neurocognitive dysfunction, cardiopulmonary problems, and infection-associated chronic conditions such as ME/CFS. Heath noted that one of the clearest lessons from the first phase of RECOVER is that Long COVID does not always simply fade away. For many patients, it changes over time, raising questions about long-term consequences that researchers are only beginning to understand.
Goldman highlighted one of the biggest scientific challenges: many patients report serious cognitive symptoms — often described as brain fog — even when standard clinical tools and lab tests appear normal. That disconnect, he said, underscores the need for better diagnostics and more sophisticated ways of measuring what patients are actually experiencing.
In that sense, Gibb’s story illustrated a central tension in Long COVID research. The illness can be profoundly life-altering while remaining frustratingly hard to capture through conventional medical tests.
For researchers, that challenge is scientific. For patients, it is deeply personal.
“It can feel very isolating,” Gibb said. “You still look the exact same on the outside, but your brain and inside your body can be a lot different.”
That is precisely why patient voices remain so important to the RECOVER effort. Data may define patterns, but stories like Gibb’s reveal the human stakes behind them — and the urgency of turning research into answers.
You can watch the virtual town hall in full here, or by hitting play on the video at the top of the page.
– My name is Jim Heath. I’m the President of the Institute for Systems Biology here in Seattle, and I’m also the director of the Pacific Northwest Hub of the National RECOVER Program on Long COVID. I’m joined here today by my co-investigator, co-director of the study, Dr. Jason Goldman from Swedish Providence here in Seattle. And I’m also joined by Whitney Gibb, who’s a patient advocate and a Long COVID sufferer who’s going to talk to you a little bit about what her journey’s been like. I want to make a very warm welcome to study participants who have been involved in the RECOVER Program and to any other members of the Long COVID community who are watching this webinar. So the agenda is, first I’m going to talk a little bit about what’s coming. So I think we’ve had a few of these webinars. Probably many of you have not heard them, but RECOVER 1.0, the first version of RECOVER ended last fall and RECOVER Cycle 2 is going to pick up again in May and will recruit from patients that participated in RECOVER 1.0. And I’ll talk a little bit about the objectives of that study, just a few slides. And then I’ll pivot to Jason who will talk about neurocognitive issues with RECOVER. And then Jason will hand the microphone off to Whitney who will tell us about her journey. And then we’ll have Q&A at the end of this. So for RECOVER Cycle 1, which started back in 2021, I think the first patients recruited into our consortium were early 2022. The major question we were trying to ask is, what is Long COVID? And this was asked of course, across the nation and we ended up enrolling about 15,000 adult participants into the adult branch of the study. There was also a pediatric branch and an autopsy branch. It was an observational study that collected everything from blood to questionnaires to a couple of different tiers of clinical tests, depending upon the different participant and their symptoms and what they qualified for. And it was really designed to help us start getting a grip onto what Long COVID and basically post-acute sequela from infection is. And the mechanistic studies that have come out of that to try to get us more of a molecular picture of Long COVID are really just now taking place. So the next slide. For RECOVER Cycle 2, one observation that was made pretty clearly in Cycle 1 is that for many of the participants in Cycle 1 that were suffering from Long COVID, their disease trajectory did not necessarily resolve. It was evolving. And in fact, there’s biological reasons to believe that that evolution may continue, perhaps some people will get better and perhaps there will be, and of course that does happen. But perhaps there will be some very long-term consequences of COVID that we have not yet begun to understand. And so with a pretty limited budget compared to Cycle 1, and based upon our experiences with Cycle 1, the types of testing that we want to do in Cycle 2 are illustrated here, the electrocardiogram, there’s an NIH toolbox, which has to do with questionnaires and a certain amount of blood testing, things like this. There’s a six minute walk tests, there’s a smell test, and there is a complete neurocognitive testing, which is actually pretty extensive, that will happen in 2.0, next slide. So the reason to focus on these subset of types of analysis that we’ll do on participants is because what we learned in RECOVER Cycle 1 is allowing us to design what we call a kind of a nested control study. In other words, we’re trying to understand different Long COVID symptomologies that are seen across the patient population. And these range from neurocognitive, cardiopulmonary and infection associated chronic conditions, which can be, some of the common features are chronic fatigue and things like this. So the key question is, you know, try to capture these long-term disease trajectories and try to understand if and when emerging complications may actually emerge. And so the focus is not going to be just on all patients with Long COVID, but on patients that have symptomology associated with these three conditions. And the size of the study, instead of being 15,000 is going to be 5,000 participants. But they will be drawn from the initial COVID group, initial RECOVER group. Next slide. So any study like this, you want to have a sort of well-defined set of specific aims and hypotheses that underlie those aims. So one specific aim is to determine the long-term trajectories of neurocognitive, cardiopulmonary and the ME/CFS sub phenotypes. And the goal here is can we understand initially the clinical and demographic factors that lead to persistent versus waning symptoms in these individuals and provide preliminary data for intervention. So a big part of RECOVER 2.0 is going to be clinical trials that we don’t yet know the details of those clinical trials, but that we will be executing alongside the observational study. And then the third specific aim on the next slide is to evaluate associations between new onset chronic conditions with Long COVID, with neurocognitive, cardiopulmonary and the Long COVID, other conditions sub phenotypes. So the new, so for example, new onset neurodegenerative disease, we hope we don’t see much of that, but we know for example, that certain neurological conditions are associated with, for example, Epstein-Barr virus. An Epstein-Barr virus can be reactivated during COVID infection. So the chance that this kind of thing will happen, cardiometabolic disease, there is now an established connection between autoimmune disease that we’re beginning to understand a little bit better. And so our hope is that we will begin to have a better understanding of these long-term associations. And of course we’re continuing to collect, I think only two biospecimen collections during this Cycle 2 study. But we have a vast biobank from Cycle 1. And so what we learned from Cycle 1 will help us understand the trajectories that we’re getting out of the Cycle 2 study. And I think that’s my last slide, with that, I’ll pass it on to Jason.
– Thanks so much, Jim. I’m going to focus just a couple minutes on talking about one of the three Long COVID syndromes that’s going to be studied during RECOVER Cycle 2. This is neurocognitive dysfunction or neurocognitive symptoms. You know, in lay terms, a lot of people are referring to this as brain fog, but there’s actually a lot of different manifestations and you know, these are slides that I borrowed from a neuropsych psychologist named Jackie Becker who presented at the Cycle 2 investigator meeting. She talked a lot about the discrepancies between subjective and objective findings. So for those who participate in RECOVER Cycle 1, you might remember some neurocognitive assessments that were being done. Some were just questions in a questionnaire, others were, you know, formalized exams, assessing different domains of cognition, you know, word finding, memory, attention, et cetera. And what we’ve noticed is some discrepancy between what people are experiencing, their lived experience and what they’re measuring on some of these assessment tools. So, next slide, I like this cartoon that she provided. You know, our assessment tools in a research study are standardized and they are kind of benchmarked against normative populations. So I like this cartoon where it’s, you know, showing this, you know, scientists sitting at the desk and talking to a bunch of different animals who are all obviously very different and talking about a fair test to climb up that tree. And it’s obvious, right, that the monkey is going to be able to do that job best. But you know, these types of tests are a little bit in the same way. They don’t measure our differences from our baseline very well. They measure, you know, how we are performing a certain task of memory or attention, you know, compared to a population mean. So I think, you know, these are not perfect tests by any means, but these are some of the things that people who participate in RECOVER Cycle 2 are going to be asked to take some of these neurocognitive tests to test, you know, how good is attention or memory or language or a reading comprehension. These sort of batteries help us on a population level to find, you know, where people are in their disease process or disease journey. Next slide please. So this is how it was done in RECOVER, you know, 1.0, we did a kind of a triggered succession of testing. So there was just questionnaires for everybody and if people were reporting problems with thinking or brain fog, they did the next test, which is this neuro QOL or quality of life. And that assessed some, you know, certain things and if there was, you know, a low score there, it, you know, it went to the next test, which was the NIH toolbox. And then if a low score there, the next test is the neurocognitive battery. In RECOVER Cycle 2, everyone’s going to be doing the neurocognitive battery. And that kind of has to do with us thinking that this is a better test despite its, you know, flaws. It’s better than this kind of triggered or, you know, sequential approach scientifically. And you know, that will give us a chance to, you know, assess how people are doing neurocognitive in everyone who’s joining this study. And next slide please. And we think that’s important because neurocognitive impairment or neurocognitive symptoms are really a feature that is one of the most common things that people are reporting in Long COVID. So this little histogram here is the problems people are experiencing who took the NIH toolbox test and you know, in the whole of RECOVER, 64% of people were experiencing brain fog. So really, really common among those who had a Long COVID, you know, more than half were experiencing some of these symptoms. And then these are the different domains that the testing might try to get at, the table at the bottom, I’m not going to go into detail there, but just an interesting finding from one of the RECOVER papers that, you know, smell problems seem to be associated with the neurocognitive dysfunction. So that link will also be explored, next slide. There’s a bunch of other questions that will be asked of the data that’s collected in the RECOVER Cycle 2. And here are some of these questions. Does SARS-CoV-2 cause transient dysfunction of cognition or you know, more long-term injury to the brain? Are neurocognitive symptoms mediated by another process like a cardiopulmonary disease or autonomic dysfunction? What is the trajectory of symptoms and resolution? Are patients with Long COVID who are experiencing cognitive symptoms at risk for neurodegenerations that could be a longer term problem versus do the symptoms resolve, and how to best assess brain fog and capture the lived experience. You know, you know as we’re sort of, you know, utilizing this questionnaire data which is a more structured approach. So this is sort of one domain that I want to just highlight at tonight’s town hall. I think we’ll hear, you know, more in a little bit from Whitney about some of her lived experience and some of the neurocognitive symptoms that she’s experienced. And there’ll also be, you know, within RECOVER Cycle 2, you know, similar approaches to trying to understand cardiopulmonary issues like shortness of breath and other problems with the heart and the lungs and ME/CFS. So the fatigue syndromes that people experience after infection associated chronic conditions. Next slide please. And I also wanted to give a brief update about clinical trials. We talked last time on our town hall back in November about two really exciting trials. I put the little logos for them there. It’s ADDRESS-LC and REVERSE-LC. ADDRESS-LC for those who aren’t there, it’s a trial of an experimental medicine that works on inflammation in the central nervous system. So kind of brain inflammation. It’s sponsored by a pharmaceutical company named BioVie and it’s funded by the Department of Defense. And I wanted to give an update that this trial is closing soon. We anticipate probably only a few more weeks of enrollment. REVERSE-LC is the other study. It’s a study of baricitinib and that’s a generalized immune modulator so it tamps down inflammation and this is part of the RECOVER program and it’s funded by the National Institute of Health. Something new that I wanted to announce is we’ve formed this Long COVID registry and the QR code is there so you can sign up for that if you’d like to be alerted to when these trials come around. And if you’d like to be considered for participation, I’d encourage you to sign up for that link. You’ll see that it, you know, gives you a patient information sheet about what we’ll do with your information, which is essentially just contact you when we think that there’s a trial that you might fit in for. So that’s all I had tonight and I wanted to pass it off to Whitney Gibb who’s a patient who is living with Long COVID and she’s going to tell us about her experiences and journey with the disease. So thanks so much for joining us, Whitney.
– Thank you, my name is Whitney and I am honored to be asked to share my patient testimony today. Thank you so much for having me and thank you to my family and friends that are also on right now and some of them in the Seattle area. So I met Dr. Goldman and Ashley in Nashville at Vanderbilt back in December when they were doing research for the REVERSE Long COVID study and I shared this testimony in person there and I was honored that they asked me to share it here on the town hall, so next slide. I just wanted to kind of walk you through my Long COVID and vaccine injury journey and what my life was like before COVID and after COVID. And I’ll focus a little bit more on the cognitive since we’ve addressed it in this town hall. So before COVID, this is me, I was 34, that was July, 2020 before I got COVID for the first time. My helpful companion there, little bear who’s 14 has been with me through it all. But I live in Nashville, which is where I met Dr. Goldman at Vanderbilt. I am a Long COVID vaccine injury patient there and I have been since 2021. I have two bachelor’s degrees from Miami University in Ohio. Before this I was very active in my physical activity, my community and my social life. And I began my career in medical devices at 24, helping to train neurosurgeons on a spinal procedure. Next slide please. I first got COVID in July of 2020. I tested positive for five weeks and probably a lot of the same symptoms as a lot of you all on this call. I was mostly bedridden. I would take walks and bike rides outside to get some sun, but I had weakness, fatigue, memory loss, shortness of breath. And I developed COVID rash, not once but twice. So since then I’ve had COVID four times, but none have been like my 2020 version. Mostly just a bad cold other than when I had a sinus infection and flu at the same time. That was horrible. But in April of ’21 I rushed to get the vaccine. I did not want to suffer like I did in July of 2020 ever again. And I thought it would help me. So I did not know that it would change my life forever along with Long COVID. Next slide please. So for about six months, especially after I got the vaccine, I was suffering and I did not know where to go. I didn’t have anyone to talk to about it ’cause I felt like no one understood what I was going through. But I experienced a lot of different symptoms and I felt really helpless. So I included this slide because when I went to go search Long COVID or vaccine injury on the internet, I couldn’t find anything. And so I included this slide just to show you a little bit about like how it felt when I went to search something, I could not find a thing. So I later came to learn that it had been locked from a lot of social media outlets, which is why I couldn’t find anything on it. But during those six months, it was a really trying time and I felt so bad that, you know, sometimes I questioned wanting to go on because I didn’t think life was worth it at that point, going through the suffering and not knowing what was wrong or how to fix it. Next slide please. So my life after COVID, I, again waited six months. After those six months I got into the Long COVID group at Vanderbilt in Nashville. I think my dad had found it online, luckily it was in my backyard, but there are people from all over the world that joined that group and finally got some tests done and started to get some answers. But during that time I have felt extreme fatigue. I was taking up to three naps a day while holding a full-time job. I had short-term memory loss, shortness of breath, hair loss, post exertion malaise, which I found out is also common with Long COVID patients. But sometimes I, you know, do a normal workout and I would have to rest for up to three days after that because I was just so exhausted from it. Gained 10 pounds of inflammation. I had leg tingles, GI issues, brain fog, sometimes my lungs felt like they were on fire. I would pant from just walking up my stairs or going on a dog walk in my neighborhood. And then probably the worst example that I have. During that time I had a full-time job with a medical company. I flew to Wilmington, North Carolina for a work meeting. And when I came back from that meeting, I was supposed to give that company I met with quotes from our company to see if we could win their business. So they called me two weeks later and they said, Whitney, where are my quotes? And I had no idea who they were. I remembered I was in Wilmington, but I didn’t remember the company’s name to even Google them. I hadn’t taken great notes during the meeting and of what notes I did take, I think I lost them. And so I had to go to my company and act like we just lost the bid because I was so embarrassed that I couldn’t even remember who these people were. Another example, during that time, I came back from a work trip and I walked around the airport two hours trying to find my car and where I parked. And when I finally got to it two hours later, I didn’t know where I put my keys and I had lost my keys. So I had literally had to get in my car towed out of the BNA airport. I also fell asleep on the freeway two times. And you know, I was, say it lightly, I was struggling. So from ’21 to ’24, there’s about three years, I still felt really, really crappy and I almost felt like I was getting robbed of my normal everyday life. And for those three years I went through lots of testing, lots of doctor’s appointments, lots of therapies. I probably spent, you know, I don’t know, I want to ballpark it, but like 20-ish grand on treatments. And I bought books. I bought anything I could to try to get better, got IVs, had people come to my house. And anyways, so during that time I was diagnosed with depression, obviously, cognitive impairment, which actually took three years to figure out. But I did do four hours of the cognitive testing and was diagnosed with delayed executive function. And my processing speed was not up to par. I had memory loss, got autoimmune disease called Hashimoto’s, fatty liver disease. My lung function had dropped. Chronic fatigue syndrome, PMDD, dysthymia, my ADHD got a lot worse, suicidal thoughts, trouble sitting still, remembering plans and then projects with a lot of detail would give me task paralysis, making most of my admin work overdue. And then my sentences would be out of order. So the next day I, you know, would read something and I couldn’t believe I wrote it because the sentence was out of order, like the words in the sentence were out of order. And eventually I did lose a job with my medical advice company that I really loved that job, but I did lose a job. So, and in fall of 2024 is when I finally started to feel a little bit better, and I would say about 80% better. And then next slide please. So I did a couple rounds of cognitive therapy and this was not until I believe 2024, ’23 or ’24. But I had a lot of trouble obviously, like remembering things, especially short term. I’d have conversations with people and not remember I’d meet people and not remember them. And I had a lot of trouble staying on task. I had a lot of anxiety, I would get overwhelmed a lot. And so this is what my life turned into. So you know, if you look at some of the images, it’s like I can’t even believe that was my life or my brain given what I had done prior to this. But I did play a lot of brain games, like New York Times crossword puzzles. I got babbled to learn Spanish. And I do think some of that stuff did end up helping as well as the cognitive therapy. Next slide please. So my life now, one of the words I’ve had to learn is acceptance. And we learned that in our Long COVID support group, which is no longer unfortunately, but acceptance is a big thing I had to learn in my life because this was my new normal. And these are just some pictures with some of my doctors, my lung therapist, pulmonologist, and Long COVID support group, labs all the time. And yeah, so this is my life now and I’m actually, I feel like I’m one of the lucky ones. So next slide please. Although I still do have trouble with things like memory, remembering plans or details, names, meeting people, events that happened, where I parked. And we did go over some of these things in cognitive therapy. But I do still struggle with it, just not as awful as I used to. Functioning speed, a lot of things that used to take me about 30 minutes will take me three hours and honestly up to six hours, doing little tasks like making an Instagram reel or doing my expenses. Anything with a lot of detail or a lot of information, it just feels like overwhelming and it feels like overload. Even this presentation, you know, it shouldn’t have taken me as long as it did. So I do still have like task paralysis where you just kind of shut down and then you procrastinate to do it at the last, very last minute. I still have troubles with the chronic fatigue, et cetera, you can see. Next slide please. There was a, something that also happened, I would say fairly recently, but I was scrolling through my social media and someone had gotten engaged and it was a guy and I liked it ’cause obviously I’m happy for them, they got engaged, but I was like, why do I follow this person? And so I clicked on his profile and I had no idea who he was. So I clicked on our messages and it turns out that we had been on multiple dates and I had met his friends and everything and I have zero recollection of ever even meeting that person. So that’s just kind of how bad the cognitive stuff can get and got for me. So I do still struggle with some of that. Here’s a couple quotes that I asked my, one of my best friends and my dad to just to weigh in on for my presentation, but I’ll just read my friend’s. “Whitney used to be an energizer bunny, but after COVID and the vaccine, I lost my friend as I knew her, her personality disappeared. I didn’t understand and I was frustrated. I thought we were growing apart. She would get anxiety and shut down, forget our plans, constantly be late. But eventually it got a little better. I had to learn how to adjust over the years. For example, I can send one line text, not a full paragraph.” And then one of the things that stands out from my dad’s quote is just, I would always tell people you don’t understand, you don’t understand. Because while I’m sure some of you on this call have the same, face the same struggle, you still look the exact same on the outside, but your brain and inside your body can be a lot different. And so that was one of the things and still is one of the things that I feel like people just don’t understand. But if you could see it inside of me, it is not the same anymore. But again, I do feel like I’m one of the lucky ones because we have doctors such as you all leading research and we’re so lucky to have you guys. I would truly not be here without people like you. So next slide please. Now it was one of the pictures last year. I’m still able to do things. There are people in my group that are not able to, that have PhDs that are attorneys. So I do feel very grateful. But it is because of doctors and a lot of hard work from them and for me and just the commitment to try to get better. So I was released from my pulmonologist in the fall four years, four and a half years later. Just got an award for doing work in my community. I now work as a pharmaceutical rep because I lost my job as a device rep. I think 13 years in, 13 years later. So now I’m in pharma, which has changed. I am now active and I can exercise again. Sometimes things cognitively take me a lot longer to do or you know, I have different ways of doing things like note taking and calendars and things like that, but I can still do it. So I do feel lucky.
– Thank you so much Whitney, for sharing that story. I think it takes a lot of courage to, you know, talk about what you’ve been through and you know, share some of those anecdotes that you know, I’m sure were just really hard and traumatizing for you to experience all those things. So, you know, we really, we respect your courage and you know, just bringing your story here to share with others. I think, you know, one thing that I’ve admired of your approach is you’re, you know, you’re networking with a lot of people. You’re working with other groups and you’re doing this, I think from what you told me to kind of help other people by sharing your story. So, you know, so we thank you for that, we really do.
– Yeah, thank you. And ditto Whitney, I really appreciate you coming on and telling us this story. You know, I think one thing that certainly Jason and I have learned, I’ve learned over the past few years is at all the meetings that we’ve had among COVID, you know, we’ve had advocates such as yourself come and talk to us. And it has a tremendous focusing effect because you know, I mean think in many ways the medical community has not seen people like you before. And yet, you know, now we, I’m hoping that in the next few years we’ll actually make real progress on this. I think all we’ve really done so far is to say yes, this is a condition and begin to define it pretty well. But there’s little signals now that there are some genetic underpinnings for some of the sequelae, we are having indirect measures that I think will ultimately lead to some diagnostics. But all the normal medical tools still don’t work. It’s actually remarkable. A tough situation.
– And it can feel as a patient, it can feel very isolating or like people don’t understand, which causes a lot of depression and just feelings of helplessness because some people don’t know how to get better. You know, and not every patient’s the same with their journey either. There are so many different symptoms.
– Yeah, that’s absolutely true, it’s that famous quote from Tolstoy, all unhappy families are unhappy in their own way. That’s the diversity of different patient journeys with Long COVID is almost as broad as the numbers of patients.
– Yeah, and I think that also, even though there are, you know, it’s been reported more than 200 symptoms associated with Long COVID and there there’s probably more, but there are some real commonalities, some things that are shared by a lot of people who are suffering from Long COVID. And I think, you know, what you just shared with us, Whitney, does kind of speak to that idea. I mean you had a lot of the hallmark symptoms, you know, some of the confusion and memory loss that you were experiencing is, you know, what we are calling neurocognitive symptoms or brain fog in the common parlance. You were experiencing the fatigue and you talked about, you know, having to recover from a, you know, an easy workout that you know would’ve been nothing before your first COVID infection. And getting rid of your Peloton and, you know, all these kind of anecdotes kind of speak to that multisymptom nature of this disorder. So what has been the kind of most life changing of all these multitude of symptoms, what is the symptom that you’ve found maybe in the past and now are the things that are most slowing you down and that you’ve most had to adjust to? You talk about accommodating.
– I think that, the one most slowing me down is like the chronic fatigue. Because I do believe if I wasn’t as tired all the time, I probably could remember a little bit more and I probably could do a little more activity. But I, you know, the chronic fatigue has not gone away. It’s gotten better, but I also now am on, I have a prescription for 40 milligrams of Adderall a day as opposed to life before COVID, I didn’t take any Adderall or if I did it was five milligrams. So the fact that it’s gone up that much just to keep me awake is a little insane. But again, I told you like I fell asleep on the freeway twice. So that’s probably been the most debilitating as well as the cognitive stuff. Like the cognitive stuff is I find is somewhat embarrassing because I look normal, but nobody knows that it’s changed.
– Go ahead Jim.
– Yeah, you probably don’t have a good answer ’cause you’ve done so many things. You’ve been very active about trying to find ways to get better. Do you think there’s any particular regimen or exercise or a thing you did that helped more than others?
– Well, different things for I think different diagnoses. For the lung function, I think my lung function got down to 67% at one point, so that I did lung therapy for, and eventually over time my lungs got better and the pulmonologist told me every five years your lungs can heal. And so, you know, that was one thing I did. The cognitive therapy did help me for how to try to better remember short term things, how to note take better, how to do, you know, your calendar like immediately when you have a thought like writing it down or like even little things like when you meet somebody in your contacts put like red shirt met at church in their contact name so when they call or you have to message them, you can find it. Little things like that. But also I’ve taken a lot of NAD and I do feel like that’s helped with my energy a little bit. And I don’t know, I do physical activity and so even though it would kill me for three days at a time, eventually it got to two days and then it got to one day and now I can exercise regularly. So I think it’s just different things but also finding out some of the things that were wrong were so helpful ’cause then I could attack it one by one.
– Right.
– Yeah, one other question that I saw in the questions that came in from the webinar participants in advance that I thought, you know, maybe I kind of posed to you Whitney, is someone said that they omit Long COVID when seeking care because of judgment and you know, is there any way to kind of get, you know, I think the rest of the question’s about the stigma that can be associated with Long COVID. And I’m wondering, did you ever feel that, ’cause you were very active in seeking out care, did you ever feel like, you know, stigmatized because of, you know, what you are telling, you know, medical providers or medical teams?
– Yeah, I felt embarrassed a lot, I felt isolated a lot. I’ve, you know, sometimes people would say like you’re being lazy. When I wasn’t lazy I was just exhausted and I was sleeping all day. So yes, there is a stigma around it, but I did read that people affected by Long COVID, it would be the eighth largest country in the world right now. And that’s like an older stat, so it might be even bigger now. So I think more people have Long COVID or vaccine injury than we even realize. But yeah, some doctors, and a lot that was common in my Long COVID group at Vanderbilt is that doctors would tell you there’s nothing wrong with you. Or the most frustrating part was when your labs were all normal. And so they’d say like, nothing’s wrong, you know, and so you would think you were crazy literally until you started meeting or talking to other people that had similar symptoms as you or were experiencing similar things. That was extremely helpful, so.
– Yeah, go ahead Jim.
– I was going to say the issue of having normal labs, you know, one of the things that actually has emerged out of research over the past few years is that at least many patients who had COVID infection have got reservoirs of vaccine or vaccine fragments or pieces of vaccine or virus, I mean reservoirs of virus or viral fragments or something like that in their body. And it turns out it is really, really hard to see them. And so as measures of that, you know, you would think a measure that directly might actually tell you something as at least a diagnostic for some patients. But it’s actually really hard to measure. So now people are including my lab moving to secondary measures or you know, if this is case then maybe this sort of thing. So it’s really been, it’s really been looking like a needle in a haystack and so many of our diagnostic tools are really designed to probe for acute disease, not for something chronic, makes it very, very challenging. I think this is, we’re learning a lot, but it’s a hard thought knowledge right now.
– Yeah, and the normal labs that we have available in, you know, a clinic or hospital, RECOVER did study those, you know, a panel of like, you know, 20 common labs that we would’ve thought might be deranged, turns out kind of stone cold, normal on a population level. So a lot of the typical tests we use can be negative. So I think that’s one finding. And you know, it kind of elevates two things. One, it elevates listening to your patients and hearing what they’re experiencing. And two, it elevates, you know, a call for further research for some of the advanced diagnostics that Jim’s talking about.
– There is going to be signal there. I mean we actually know there is signal there. It’s just really hard to turn it into something that one can use in a general fashion yet. But, you know, it is like when you were told given some specific thing to work on, it was actually much easier because then you could focus on your lungs or focus on this or that. And, you know, that’s the value of having a, you know, highly accurate diagnostics here. Without that you’re sort of, you know, swimming in the dark. It’s very tough.
– Whitney, I want to turn to the question answer here for a minute. There’s some of the participants on the webinar tonight have questions directed directly to you and then there’s some sort of general ones. So maybe we can in the last, you know, kind of 10 plus minutes or so, try to answer some questions directly. So here’s one from one of the webinar participants. It says, question for Whitney, do you see a difference from physical, emotional, mental stress and the fatigue levels?
– Well that’s a good question. Do I see a difference in the, I don’t know if I can measure that. That’s a great question. I don’t know if that’s measurable, but yes, there are. Gosh, I would have to think about that. Yeah, I don’t know, I’m not sure. I don’t know if it’s measurable, but yes, I do feel kind of fatigued from all of them just because my mental health has changed, my physical health has changed. And obviously both of those play into your emotional health as well. So that’s a really good question.
– Yeah, there was a similar question also submitted in advance that, you know, try to stress that point about the mental health diagnoses that can come along with Long COVID. And I think, you know, you really covered that really nicely. I think that in general in the field it’s thought of that the anxiety and depression can result from the situation, you know, we call that situational depression of not being able to do the things you used to do. It can also be completely, you know, you know, related to what you’re experiencing versus preexisting and a worsening of a preexisting, you know, depressive syndrome. So I think there’s all different flavors of the mental health diagnoses and conditions that can come along with Long COVID.
– And I know some people in my group did have like PTSD, there was some psychosis and I do know, you know, some people had suicidal thoughts often just because of their health and not being able to get better.
– Okay, and Jim, I’m going to be kind of looking back and forth between the Q&A and the questions in advance but jump into if there’s any that you think we should be answering so we can.
– Well we could talk a little bit about Cycle 2. And so I’ll just say a few words on that. There’s a question about what’s the status of being enrolled in the Cycle 2, that’s the next RECOVER study for those who participated in the first study. The first study will draw exclusively from patients who participated in Cycle 1. But not all patients who participate in Cycle 1 will be able to participate in Cycle 2. It’s just a smaller study. It’s much more, it’s very tightly funded and it’s a 5,000 patient study instead of a 20,000 patient study with a focus on certain symptoms. And there’s another question here too, which is can RECOVER stop defining Long COVID as a cluster of symptoms or using the 11 point score system to exclude patients from research. This is actually something that was brought up at this recent meeting in Arizona. I think Jason brought it up. And so there is physician discretion, I think, but I have that right, so you don’t necessarily have to fall into a black and white category. There is a gray area that the physician has discretion on.
– Yeah, and we should address that because, so there’s a couple things there. I think for one, the Long COVID research index is a research tool for categorizing Long COVID. And it really is not perfect. I think if you have a single symptom, you know, a lot of people in the chat have measured smell and taste disorder. So if you have that single symptom, you won’t be classified as Long COVID by the research index. So I think that when we redid the research index, we kind of tried to position it properly that it’s a tool for categorizing the most symptomatic patients that have the kind of cluster or syndrome that, you know, like Whitney’s described, you know, with multiple domains affected, the mental health, the neurocognitive, the fatigue, you know, all these different things together. But it doesn’t really classify very well if you have a single symptom. So, you know, for clinical care purposes, people should not be using the Long COVID research index for research studies. It is a, you know, somewhat useful tool but needs to be drilled down further to talk about certain syndromes. So for instance, all the clinical trials, you know, are not using the Long COVID research index. They’re using, you know, really detailed questionnaires to screen people in for neurocognitive dysfunction or autonomic dysfunction. So, I think the Long COVID research index is a tool, but it’s known not to be perfect and it’s not a diagnosis of Long COVID. So I think that’s important to address. Just one more word on inclusion in Cycle 2. And there’s another question in the Q&A about people from the earliest cohorts that, you know, were excluded from RECOVER trials. So I think we can try to address some of these issues of study inclusion. As Jim mentioned, RECOVER Cycle 2 is a smaller study so not everyone will be invited, unfortunately, there was talk at the meeting of, you know, potentially trying to do a questionnaire only, but right now that’s not the study that is moving forward. You know, the ship has been built while we’re, you know, trying to sail it. So I think there’s been changes throughout and you know, hopefully we’ll be able to at least, you know, try to retain people and participating by questionnaires. But right now, you know, you will or you won’t get an invite to participate in the Cycle 2 program and that’s not going to be a decision at, you know, at our hub level it’s a decision from the sort of central study who’s inviting, you know, a big group of people selected randomly and then additionally trying to get people who have, you know, the severe neurocognitive dysfunction, cardiopulmonary and the chronic fatigue type symptoms. So that’s who the study is going to be enriched for. And you know, just to address that kind of the exclusion of the earliest cohorts of infected persons, actually RECOVER was very good on that. It did not exclude anyone who lacked a lab diagnosis or was from the earliest periods. You know, you could be classified as probable, you know, COVID infection and still be included in the trial. So that was not an issue with RECOVER, but it has been with some other trials. All right, so that’s sort of what I wanted to say about inclusion and you know, we’re happy to address further questions about this, you know, over email you can message your state coordinator or communicate with us in the ways that we have. Let’s see, what else, Jim, is there any other questions that are jumping out at you that we should address in the last few minutes?
– We’ve answered a number of them. There’s one question here asking, I seem to have lost it, but, oh, what is the connection between Long COVID and worsening or new autoimmune disease such as lupus? Has been in the literature an established, I would say epidemiological connection between autoimmunity and Long COVID. And so, and I think in the next year, in fact, I know in the next year and next short amount of time, there will be some genetic connections between things like lupus and other autoimmune conditions and Long COVID. And so this is, you know, those genetic connections are going to be important, but they’re also going to be the kind of thing that give you a sort of a better molecular definition, at least for some of the patients serving for Long COVID. That this is of the reality of the situation. We know it exists and you know, it just has to get throughout the medical community. It’s not a diagnostic yet, but it’s a clean signature.
– There was a couple questions in the questions submitted in advance about olfactory dysfunction or smell and taste disorders. So I wanted to just highlight one paper that recently came out of RECOVER and I’ll put it in the chat here so you can click through to that. But that was a very interesting study that showed that many people experience smell and taste dysfunction or loss of taste and smell or some changing of their taste and smell and others who did not notice it also experienced that being, you know, lower than normal. So the other interesting thing that was picked up in this paper, in JAMA Network Open is that there may be a link between the neurocognitive symptoms and the smell and taste disorder. So I think that is something that needs to be pursued further and to see if that’s kind of a hallmark or if it tracks to, you know, you know, earlier, you know, problems with cognition.
– So I think we’re at time, we will just, for those of you out here first, I want to, I’m grateful for those who attended this town hall, especially for those who are patients who are members of the Long COVID committee or even folks who were in our Cycle 1 RECOVER Study and want to participate in Cycle 2. We do have these town halls periodically, something like once every three or four months. The science that’s coming out of Cycle 1 and will continue to come out with Cycle 2 is coming out a little more quickly now that the biobank is complete and analysis are happening. And so I’m optimistic that over the next couple of these town halls we’ll be able to give you a little more resolution on that beyond just population type statistics and clinical observations. So that’s something to look forward to. And we will probably have another one of these town halls maybe shortly before we officially open up Cycle 2 to let people know what to expect. So Whitney, thank you so much. I really appreciate you coming on and sharing your story. It’s a powerful story and it was, I thank you, that’s all I can say.
– Thank you so much for having me. If it helps one person, I’m just happy to share it and yeah, we’ll keep fighting this thing. So thank you so much to you and your whole teams for doing the research to help us ’cause without you guys, we really don’t, we don’t know how to make it, so thank you.
– Great, thanks Whitney. And for everyone on the town hall today, thank you for joining and for your interest, you know, the link to the Swedish Long COVID registry is in the chat there and we can also try to send that out afterwards. If anyone is interested in participating in interventional clinical trials, that’s a great thing to sign up for and we will get you more information through that registry. So thanks again for everyone and we’ll see you next time.
– All right, thank you all.
