Published September 11, 2024 in the New England Journal of Medicine
Ed note: This discussion below may help those afflicted with long COVID to understand the confusing array of symptoms they may have. I hope this lengthy article may prove worthwhile reading for some. The existence of long COVID in about 6% of the those acquiring COVID is a reminder that prevention is key. Please consider receiving your updated immunization ASAP.
The millions of people worldwide who are suffering from a vast array of disabling symptoms long after being infected with SARS-CoV-2 may eventually benefit from a new consensus definition of long Covid.
Rachel Gotbaum: This is “Intention to Treat” from the New England Journal of Medicine. I’m Rachel Gotbaum. Today, we are going to talk about the millions of people who have been struggling with baffling and often disabling symptoms since being infected with SARS-CoV-2. There has been no standard definition of what exactly long Covid is or how to diagnose it, until now. Recently, the National Academies of Sciences, Engineering, and Medicine came out with a comprehensive definition of long Covid, calling it a chronic, systemic disease state with profound consequences.
Long Covid can affect any organ in the body and can attack one or multiple systems, and includes some 200 symptoms and hundreds of conditions, such as lupus, cardiovascular disease, fibromyalgia, and cognitive impairment. The hope is that with this new definition, clinicians, researchers, and policymakers can finally help the patients with long Covid who continue to suffer.
Tiffany Brown: I’m Tiffany Brown. I’m 56 years old. I got Covid in August of 2020. By December, I started to feel ill again. I was having trouble concentrating and focusing. The headaches and the full body aches are sometimes so bad, you just don’t want to get out of bed. You just want to lay there because you hurt so bad.
Susan Miller: My name is Dr. Sue Miller. I am 51 years old, and I have had long Covid since my only Covid infection, which was in May of 2022. So I was sick for about 2 weeks. I had a lot of GI symptoms. I had a fever, a terrible sore throat, and I had hallucinations.
After that, my energy level never recovered. I was having headaches and terrible fatigue, and I would forget things. I was a practicing neonatologist at a community hospital, and the thing I noticed when I went back to work was that I couldn’t multitask. And my job is one big multitask.
Tiffany Brown: I started to feel so ill that I went back to the doctor, and I wasn’t getting any results. The doctor took blood work, would always tell me basically, “That’s a lot of symptoms, and it doesn’t sound like you actually have a specific illness.” I felt that they implied many a times a lot of it may be in your head, and they would tell me something like, “You could lose weight, you could eat better, you could start exercising.” And I walked daily for years, and after having Covid, I could not do that. I still can’t. (continued)
Susan Miller: I was an extremely high-functioning, athletic, smart, overachieving person. So I would take call for 24 hours, I’d go home and run six miles, cooked my family dinner, walked the dogs, read books, and all of a sudden, I couldn’t do any of that. And it was scary.
Tiffany Brown: I realized that I wasn’t getting any better, and I went to a bigger hospital out of state and had a full interview and many tests done, and I was told I had Covid long-haulers. I had never heard of the Covid long-haulers before, and it was very, very helpful and some relief to know there was a name to what I had and that it wasn’t just in my head.
Susan Miller: One night on call, I was called to see just kind of a routine check of a baby, and I left my call room, and I forgot my glasses, my ID badge — so I couldn’t get back into the call room — and my stethoscope, and I walked out and I got lost a little bit. And it was that moment that I knew I just, I couldn’t take that chance. I took an oath of do no harm. My whole life, I wanted to be a physician. I was at the peak of my career, and I lost all of that because of a virus.
Tiffany Brown: I no longer have my job. I worked for 27 years for the county that I live in, and when I was off work, I was told if I didn’t come back in a certain time, I would be relieved, and they did so. And I had been there so long and knew so many people that it just felt like I had lost friends and family that I would never get back.
Susan Miller: I saw my internist. She ordered a bunch of basic labs and an MRI of my brain, and all of that came back normal. She had no idea what was going on with me. She said that there’s nothing that she can do. All she could offer me was a hug. And now, 2 years later, I realize that that’s really common. Most doctors, they don’t know anything about long Covid.
Tiffany Brown: It was hard, very hard, because most people look at you and you look like you’re OK. They don’t see your pain. So it was very disheartening.
Susan Miller: I had been on a waiting list for a year and a half, and I saw a new neurologist. He was reading my MRI. I had asked him a pointed question about my hippocampus because they’re both small. One’s smaller than the other, and that’s abnormal. They shrunk. They have atrophy. And so I said to him, “Well, this is something that is seen with long Covid,” and he said to me, “Yeah, you probably know more about that than I do.” So me, the brain-injured neonatologist, knows more about how long Covid affects the brain than the neurologist, who is a specialist in the brain. So I called and reached out to every long Covid clinic. I basically just tried to get in anywhere I could.
Tiffany Brown: After I was diagnosed with Covid long-haulers, I applied for the state disability, and I got rejected. No long information, just that “We don’t feel you’re disabled at this time.”
Susan Miller: So what I found at the long Covid clinic is that from a psychological standpoint, I have huge validation and a lot of support. What I did not find is that there were actual experts there on this postinfectious syndrome that I have. We can’t tell you why some days your fatigue is so bad that you just have to lay around all day. We can’t tell you why you get bruises in weird spots. We can’t tell you why your toes turn blue all of a sudden. And we don’t know what to do to make it better.
Tiffany Brown: I took out my retirement to have something to live off of, so I was very frightened, from one minute to the next, if I would not be able to pay my gas and light or keep my home. What are you going to do once your money runs out? And I went and got a disability attorney, and through the attorney, I was able to get disability. I didn’t, at one point, think I would be able to go through it. I just thought I would just give up. And it’s still hard day to day.
Susan Miller: I think the biggest problem is that medical providers are not engaged in long Covid. It’s not on their radar. The amount of money they have put into research for long Covid is like spitting in the ocean. Long Covid needs to be in the discussion, the everyday discussion for physicians, for medical professionals, for researchers, for our government. We need to understand that this is a public health crisis. And it’s not going away for some of us.
Rachel Gotbaum: This is “Intention to Treat” from the New England Journal of Medicine. We’re now joined by two people who helped shape the new National Academies of Science definition for long Covid. Karyn Bishof is president of the Longhauler Advocacy Project, and Dr. Wesley Ely is a professor of medicine and critical care at Vanderbilt University. So Dr. Ely, you’re an ICU doctor, you do research. And at first, you’ve written for NEJM and said that you didn’t really believe long Covid existed. Tell us about your experience with that and how it transformed.
E. Wesley Ely: For 25 years, we’ve been studying survivors after the ICU and diagnosing them with this disease state called postintensive care syndrome, which is an acquired disease of dementia and post-traumatic stress disorder and depression, and muscle and nerve disease. So as an ICU doctor, I’m taking care of all these Covid patients in an ICU setting, on ventilators, immobilized, on high-dose sedatives, and I’m thinking they’re getting out of the ICU, and they just have PICS, postintensive care syndrome, and all these people are talking about these prolonged symptoms. And then we started getting calls into our research center here at Vanderbilt University, and these are people who are telling us, “We have prolonged symptoms. We were never in the hospital. We got Covid and never even got admitted to a hospital.” So now we have a new set of people coming to us, saying, “We can’t think well. We have blood-pressure problems. We have heart rates that are through the roof. We have GI problems, all kinds of joint problems — I mean, this whole constellation that we now know of as long Covid over 200 symptoms — and we were never put in a hospital at all. What can you do for us? What is this?”
And so I had to start thinking to myself, “Wes, you need education. You need to learn. And most importantly, you need to listen to these people.” And as a medical insider, we are taught to not diagnose something unless we understand what it is, to not label something unless we understand what it is. And when we don’t understand something, we feel uncomfortable. And that’s the way I felt.
I felt like, for example, part of the disease of long Covid has a lot to do with the symptoms of myalgic encephalomyelitis/chronic fatigue syndrome, and that ME/CFS is a disease state that many people don’t believe of in Western medicine. There’s no diagnostic test, there’s no treatment, isn’t even real, and many doctors label such patients as psychosomatic or having psychological illness and suggest that they go get psychiatric help, and it’s all stress related. So that’s where I was coming from as a physician. Am I willing to lay down my diagnosis and call it a real thing and have other doctors in my circles say, “Wes, are you losing it? Do you actually believe this stuff?,” and in the end of the day, I fell heavily on the side of, “Yes, I believe in this. And call me a quack, but I think we’re going to prove that this is a real disease state, and we’ve got a lot to learn from the patients and about the science.”
Rachel Gotbaum: Karyn Bishof, you were a firefighter and a paramedic when you got Covid and then became disabled with long Covid. Tell us about your experience and how you found this community and started to do advocacy.
Karyn Bishof: It started to become evident to me that I wasn’t recovering as much as my coworkers and something wasn’t quite right. I ended up losing my dream career as a firefighter paramedic because of these health issues, and really early on there was no information. I literally went online and Googled “prolonged symptoms from Covid,” and that is how I found the article, talking about long Covid for the first time. That’s how I found an online community of other patients. Up until that point, I thought I was completely alone.
There was nothing about this on the news, nothing about this in the media. This was the first time hearing about it, after 3 months of being completely isolated with all of these new symptoms and health conditions that nobody understood. And seeing all the stories from patients like myself, like people being unable to work, people experiencing symptoms that are not being talked about on the news. We now know that there’s 200 symptoms, as Wes already stated. And part of that picture is that umbrella picture of long Covid, which none of us really recognized and knew how large that umbrella was at the time.
I started doing these patient surveys, saying, “What symptoms are you developing? What conditions have you developed? What clinicians are you seeing that may be helping? Have you lost your job? What are your employers saying?” And seeing the responses from so many people across the globe, coming together, trying to figure out what is going on with us, and what can we do to raise the alarm bells for the public and for clinicians and researchers to start helping us and prevent others from becoming like us. And I started to form the Covid-19 Longhauler Advocacy Project. And to date, we’ve now grown to 60 chapters across the U.S., in every U.S. state and territory, and we have chapters for pregnancy and family planning, teens, BIPOC, LGBTQ, caregivers, labor force union, bereavement, and more, because we find that our role is really identifying the gaps and our needs and bringing that to the stakeholders who make the decisions and who can implement the changes that we need.
Rachel Gotbaum: Do we know how many people have long Covid?
E. Wesley Ely: There are fairly good data to say that at least 6% of people who get Covid end up with long Covid. That still translates, by the way, into globally over a hundred million people, and in the United States, 15 to 20 million people. I think that qualifies as a public health disaster right there.
Rachel Gotbaum: So let’s talk about what’s happening, because we’ve talked about 2020, but this is more than 4 years later, and we finally have a definition. What is happening for patients?
Karyn Bishof: I think one of the biggest barriers that we still face all comes down to the foundation of education around long Covid. And many in the patient community are still facing these barriers and the stigma from providers who can’t imagine that a virus is causing all of these issues, or think that there has to be something wrong, or there’s comorbidities, or preexisting conditions in these patients, and that’s why they’re developing long Covid. But as the 2024 NASEM long Covid definition points out, anybody can get long Covid, regardless of demographics, regardless of you’re an adult, regardless if you’re a pediatric, regardless if you have prior health conditions. And I think that’s one of the things that has been overlooked during the pandemic as a whole.
E. Wesley Ely: I think that what’s happening is that we’ve got millions of people suffering from a disease state, who have either never been acknowledged to have that disease state by a medical professional or have been acknowledged and are getting grave difficulties at finding any real help from the disability and income perspective. So most of these patients who have a severe, progressive form of this, or even a moderate form of this, have lost their livelihood, have lost their ability to make money, they’re disabled, and many of them in our support groups, for example, come to us and say, “OK, I’ve now lost my housing,” and that really puts people in a state of despair. So it’s a public health nightmare, quite frankly. And the public health nightmare is that we have not met these people where they are to help them find Social Security disability income, we have not helped them find the medical needs that they need because doctors haven’t yet, without a definition, felt comfortable making this diagnosis. But we hope that this 2024 NASEM definition will allow the doors to be opened for both medical professionals and the public at large to find a way forward.
Rachel Gotbaum: So Karyn Bishof, the lack of an understanding of this condition has created major barriers for patients to get help.
Karyn Bishof: In terms of the barriers that long Covid patients are facing, when many patients are seeking benefits like Social Security disability, or food assistance, or Medicaid, or housing assistance, they have to rely on a doctor’s documentation of how their illness impacts their activities of daily living, how it impacts their ability to work, how it impacts their ability to attend school. And many of these patients can’t even get that initial documentation from their providers to do that. So in education, I mean, educating not only the patient community, but the very clinicians who are responsible for identifying long Covid in the first place. And the same thing goes for payers and insurance. Many of the medications that we need are not approved for long Covid. Long Covid has no approved treatments, no cure, no anything. So patients are having to also get the diagnoses for, say, conditions like POTS in order to get beta-blockers, or conditions like MCAS in order to get needed medications, and access to many of those specialists are few and far between. So access to clinical care and the type of clinicians needed to get the documentation we have to address in order for the long Covid community to move forward and recover.
Rachel Gotbaum: So how do you think we got here with this lack of attention to this problem?
E. Wesley Ely: I think we are where we are in terms of the societal unacceptance of long Covid and the medical community’s essential unacceptance of long Covid — broad-sweeping brush strokes here — because this pandemic occurred, it threw us all for such a loop, it scared everybody dramatically, we had millions of deaths, and we all want it to be over. We want to forget about this and move on with our lives. And the last thing we want to hear, as a society, is that there is an infection-associated chronic condition resulting from this virus that doesn’t go away for people years later. But honestly, everybody I’ve asked, “Have you ever heard of long Covid?,” they all say, “Oh, yeah, my cousin has it,” “Oh, yeah, my best friend has it.” Everybody seems to know somebody who has long Covid, and yet the government and medical community is not talking about this very broadly. One of my patients applied four times to Social Security, got rejected every time. She has a medical diagnosis of long Covid. She has all the chart documentation that you could ask for. And yet she can’t get the help that she needs. We’re just way behind on acknowledging the realities of this public health disaster.
Rachel Gotbaum: So Karyn Bishof, what is it like for you today? How is your functioning now?
Karyn Bishof: Unfortunately, my health continues to worsen since developing Covid. I’ve been diagnosed with lupus, eosinophilic esophagitis, chronic migraine and new daily persistent headache, GI dysmotility, insomnia, and many other things. I mean, my daily medications are well over 15 to this point, and I’ve probably seen over 40 or 50 different clinicians over the last four and a half years. My typical day, unfortunately, starts with hours and hours of nausea and vomiting every single morning and GI upset. It doesn’t matter if I ate the day before or 3 days before. It happens every single day, and absolutely wipes me out. I mean, I spend my day in bed, sometimes make it down to my couch in my living room. But something like attending my son’s soccer game on a weekend means that I have to commit myself to doing absolutely nothing for 3 to 4 days before and 3 to 4 days after in order to just attend a 2-hour event. And at that 2-hour event, in order for me to go, I have a chair that has a leg lift on it, it has a canopy, I have to bring ice packs with me because I’m not able to regulate my temperature, but I also have to hide from the sun because I have lupus. So it is a cascading, vicious circle of trying to manage, and a lot of the times, unfortunately, we’re not able to prevent. We’re more so chasing, chasing, chasing, and we’re always behind the eight ball.
Rachel Gotbaum: So how will this new long Covid definition help improve the lives of people like Karyn Bishof and so many other people living with this disease?
E. Wesley Ely: OK, I’ll say three ways that this definition really improves things — clinically, from a research perspective, and from a policy perspective. Doctors can now see a person in an office that they would have listened to their symptoms and said, “Gosh, I don’t know if I should be out on a limb, making this diagnosis, when I don’t even understand what the disease is, or even to call it a disease.” Now, the doctor can hear their patient and say, “Wow, you meet this 2024 NASEM long Covid definition very clearly. You meet the criteria. I’m putting in your chart that you have long Covid.”
Doctors before wouldn’t have done that because they didn’t want to be out on a fringe and be called a quack, OK? So that’s the first thing is clinically. Now the patient also has achieved a great accomplishment, now that they can be believed and be heard. Then second, from a research perspective, doctors like me, physician-scientists, can design randomized control trials with explicit inclusion/exclusion criteria based on this definition, and get the right people in, exclude the wrong people that won’t help to answer a specific research question, and get the public answers about the right therapies for this disease state. And then third, the policymakers can say, “Ah, finally, I get it. That’s what this is? Let’s change the way we determine disability income rights for patients to meet this definition.” So all three of those are huge things we think can be affected by the publishing of this definition.
Karyn Bishof: This definition helps to get everybody on the same page. Now, we have a standardized, consensus definition, that if adopted government-wide and implemented, will help start shaping these programs to benefit the long Covid community. But the most important thing to emphasize is that it’s actually adopted and implemented. Having this definition is a great starting point, but unless these people and these programs begin to implement that, the long Covid community sits and waits in the same position we’re in right now.
Rachel Gotbaum: Thank you both so very much.
Karyn Bishof: Thank you for having us and for raising awareness about long Covid.
E. Wesley Ely: It’s a privilege to be part of this process of discovery and, hopefully, to find patients who are suffering some answers.
Rachel Gotbaum: We had help from Associate Editor Cliff Rosen and Producer Brigid McCarthy. Our managing editor is Debra Malina, and our engineer is Adam Straus. Next time, researchers say it may someday be possible to communicate with more patients in a coma or vegetative state than previously thought.
Speaker 6: I think that this indicates that there’s probably a substantial population of people who we see just no evidence of responsiveness at the bedside, and yet something’s going on in there.
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