A doctor’s humbling journey treating long Covid: ‘The second we think we know what we are doing, we fall flat on our face’

I first met Wes Ely in 2016, when I wrote about ICU delirium and Ely’s attempts, as a critical-care physician at Vanderbilt University Medical Center, to urge fellow health care workers to rethink the use of heavy sedation in ICUs. His research was an attempt to limit the crippling cognitive and physical impairments he saw develop in many critical-care patients long after they left the hospital, something he came to call post intensive care syndrome, or PICS.

Well, a lot’s happened since 2016. I thought of Ely’s work often as ICU care became a mainstay of the Covid-19 pandemic and wondered about the long-term prognosis of people who were so sickened by the virus they’d been heavily sedated and placed on ventilators to survive. Then long Covid showed up, and became something Ely grappled with as well.

Through a new book, op-eds, and a steady stream of TikToks, Ely has become a leading voice on the recovery that can take place after trauma or grueling illness and on the importance of preventing new Covid infections. As the pandemic marches on, he’s increasingly concerned about the resulting epidemic of chronic disease society may face. I spoke with Ely about his concerns, what he initially got wrong about long Covid, what he finds humbling about medicine, and, why, despite all the suffering he sees and treats, he still holds hope. The conversation has been lightly edited for length and clarity.

In your book “Every Deep-Drawn Breath,” you describe how you came to understand that ICU treatment may harm patients even as it allows them to survive. Can you describe this awakening you had and how it started you on your research trajectory?

I had the opportunity to care for a woman in her 20s named Teresa Martin. She had made a mistake and found herself, after an overdose, in the ICU. I was the primary doctor helping to take care of her. We worked so hard, with all the technology that we had, to try to get her through. At the end of the day, I thought, “What a great doctor I am, I helped you survive this.” When she came back to clinic weeks later, I was expecting a high-five, but I saw a woman who couldn’t walk, who couldn’t go to the bathroom, who couldn’t shower. Her mother said, “Where’s my daughter? What happened to her? She looks like an old woman now.”

As a physician, I had to face the fact that none of that stuff she was suffering was what she came into the ICU with and that I was complicit. I felt guilty about it. I knew that something that I’d done had injured her but I didn’t even know what. I started grappling with that and became kind of obsessed with figuring out how to get people off the ventilator sooner so they didn’t get so much injury in the ICU. And that’s what started me on a 25-year journey in this area.

Can you describe these issues you work on: post-intensive care syndrome and ICU delirium?

What happens with people who get critically ill and live in an ICU is they come in with one problem and under our noses, in the ICU, under our care [and due to sedation, ventilation and immobilization], they accrue problems in their brain, such as acquired dementia, PTSD, and depression. And then they accrue profound problems neck down in their muscles and nerves which leave them unable to walk, climb stairs, and live a normal life physically. So they become very disabled, cognitively, mentally, and physically. That’s what PICS is. ICU delirium is one of the strongest predictors of the development of post-ICU syndrome.

Like so many ICU physicians and other staff, you were on the front lines of the first Covid waves. What were your first impressions, and how did those evolve during the pandemic?

Taking care of the most critically ill patients who were on ventilators, dialysis, and other forms of life support was just an immensely profound experience. And I knew that those patients were going to leave the hospital, those who survived, with an immense amount of acquired disease, that this was going to be PICS to the extreme. So when people started talking about being long haulers and having long Covid, I just thought, those are the ICU survivors who have PICS. Through our CIBS (Critical Illness, Brain Dysfunction, and Survivorship) center, we started offering Covid survivor support groups — we didn’t even call it long Covid in the beginning. We started finding people who got out of the ICU and had PICS. And we had patients, and this was shocking to me, who got out of the ICU, their PICS was in a strong state of recovery, then 100 days later they would fall off a cliff. And I thought, “What is that? That is not PICS.”

Then there was a third group that never came to the ICU at all, went through a mild case of Covid but then came to our support group and said, “I didn’t have a problem until three months after Covid and now my life is ruined. I can’t think well anymore, and I can’t work. I have all these heart-racing problems and GI disturbances.” I had originally thought, this is PICS and all these people don’t know about PICS yet, but then I realized that long Covid was something completely different.

That must have been startling because your research focuses on people post-ICU?

Yes, I had to admit I was wrong. And I was so sure I was right. It was super humbling. But that’s what I love about medicine: The second we think we know what we are doing, we fall flat on our face.

You’ve spent two decades trying to get people to realize that being released from the ICU may not necessarily be the end of their medical or mental health issues. Do you see an analogy with Covid … that just because you test negative after an infection, your problems are not necessarily over?

Absolutely. The rapid antigen test tells you when you have that virus active in your body, and when it starts going negative, you think, this has passed. But now we know that the virus can persist as a viral ghost in your GI tract, brain, and cardiovascular system, and that it can also alter your immune reactions. What happens is that over ensuing weeks and months, your body takes on a new set of diseases that you did not have at the end of acute Covid. That’s what we call long Covid.

Unfortunately way too many people with this are not being believed about their illness. And this has happened before, with long Lyme, and CFS, and fibromyalgia. And I will tell you, as a medical insider, that I used to think that those weren’t real. I was taught in medical school that they weren’t real. I was just with some medical students last week, and I talked to them about a patient of mine who had long Lyme. And they said we were taught that that’s not real — and these are current med students. This is something the ivory tower medical profession needs to realize — long Covid is going to push us to get outside of our comfort zone with illnesses that we can’t define. Because we don’t like it when we can’t understand something, but we have to get over that.

In your book, you describe saying to patients, “I will not leave you.” It’s not something you typically hear doctors saying to patients, even in movies. Can you talk about how you communicate with patients, especially those with PICS and long Covid?

If a person is suffering pain, fear, illness with uncertainty about where they’re going to be going with this illness and they are seeking somebody who can help, they want to be cuddled and lifted up and have things explained on their level. And by cuddled, I don’t mean physically holding because some people wouldn’t want that. What I mean is paid attention to at an intimate level. You know, if somebody was in the streets and they were broken, I’m not going to stand 20 feet away from that person and minister to them at a distance. And yet, when patients come into the ICU and they’re super, super sick, that distance caring is exactly what our culture evolved into, where instead of being at the bedside and holding their hands, looking in their eyes, oftentimes we’re caring for them from the door. We’re looking at their monitors. We’re adjusting their life support machines at a distance. And throughout Covid, we literally were outside their room with the glass door shut, a worst-case scenario. That’s why I’ll whisper in their ear and say, “I’m present. I’m your doctor. I’m not leaving you.”

What’s your message to doctors, not just in critical care but in any speciality, who are seeing patients with these complicated symptoms that are difficult to understand, let alone treat?

The first thing I say to my fellow physicians and nurses and health care providers is we’re busy. We don’t have a lot of extra time, I get that. But it does not take that much time to be at eye level with a patient, look them in the eyes, hold their hands, and give them this compassionate message of your presence and the fact that you will not abandon them during this illness. And also to say, I don’t have all the answers for you. For example, for long Covid, there’s no treatment yet, but you can say to them, “I’ll stick with you as we learn more in the months and years ahead and we’ll figure this out together.”

Why did you decide to write your book?

As a physician who is also a scientist, I have an intense amount of discomfort at the bedside when I see that we do things that don’t have evidence to back them up. As a scientist, I’ve conducted 25, 30 years of research and I realized there was a story evolving that — no matter how many papers I published — was never going to reach the lay public or other health care professionals who don’t really keep up with the literature. Growing up in Louisiana with my mom, we read poetry, she edited my essays, she taught me to love words. So I love writing and reading and literature and that’s why I thought, “Why don’t I use the stories of my patients, with their permission, to leverage the power of literature to show people how we can be caring for people in the most humanistic way.”

I asked each patient for permission to use their story. And one patient said, OK, but I don’t want you to make any money off my story. After she said that to me, we decided that every penny in proceeds from “Every Deep-Drawn Breath” would go into an endowment to help people with long Covid. We’ve hired social workers and are helping people find disability services all over the country and the world.

On a very different end of the communication spectrum, there’s your TikTok account. Why did you start that?

So, I’m 58 years old. You know, an old doctor. And if you had told me two years ago that I was going on social media and Twitter, I would have said, “You’re crazy. There’s no way.” But two things happened. One was that at the beginning of the pandemic, a lot of doctors around the world were writing me and saying, there’s so much ICU delirium, we’ve got to study this. And they said if you get on Twitter, we can find the patients faster. I said fine. I’ll open a Twitter account and we will advertise for the study on Covid delirium. We enrolled 2,100 patients in two weeks. And so I decided to stay on Twitter to share and validate people’s stories and spread good science about long Covid and brain dysfunction and PICS and such.

And then about six months ago, people in the office said you need to get on TikTok and I said, “No, I’m drawing the line.” But there’s this crazy set of misinformation being spread on TikTok, misinformation so egregious that I thought, “You know what, I’m just going to try five videos and see what happens.” So all I do is I sit in my office, flip my phone around, and give a two to three minute message on some topic, and I post it. I don’t spend any time on it, there’s no production. It’s super old school. But if it’s helping people, then I’ll keep doing it.

Entering the third year of the pandemic, there is so much anguish and strife right now, and possibly a wave of chronic disease that patients, health workers, and society at large will be facing. Yet you remain hopeful. Can you explain why people with long Covid should hold similar hope?

They can absolutely heal. The brain’s capacity to heal is so much greater than what people give it credit for. We have trillions and trillions of neurons and connections, and these things can regrow. So, if a patient gets this brain fog and they think, “Oh, my gosh, I’m never going to get back again,” I always tell them, do not lose hope because you will find recovery. And whether it’s mitochondrial disease or glial cells that have died, or vascular clotting that develops into long Covid, your body has this capacity to recover, and you must remain hopeful that you can get through this. And we are working hard as scientists to do the right trials to find answers. I just want people to hang on and know we’re going to stick with them and not abandon them during the process.