We need to talk about “long-haul” covid.
In one study of SARS survivors, 24 percent had markedly diminished exercise capacity and health status compared with the general population at 12 months after the onset of the illness. Another study showed that two years after SARS onset, more than 50 percent of SARS survivors had impairment in lung function tests and “their exercise capacity and health status were remarkably lower than that of the general population.”
Dozens of other studies outline how SARS and MERS left many survivors with long-term health conditions. Enduring fatigue, inability to return to work and ongoing mental health challenges were incredibly common, in addition to the cardiac, respiratory and neurologic symptoms.
We know what viruses can do to the immune system long term. And we know that other coronaviruses have left survivors with similar symptoms. So why are covid-19 long-haulers having such a hard time being taken seriously?
My own experience
As a doctor who treated hundreds of covid-19 patients in New York and sees them frequently in the emergency room, I know how this virus touched nearly every organ system, and how many still haven’t recovered months after their initial illness. But in a sense, I’m also a long-hauler myself.
In 2014, I fell ill with Ebola after taking care of patients in Guinea. I spent 19 days in the hospital, and thankfully ultimately survived. But for months I had joint and muscle pains. It hurt to walk. My hair fell out in chunks. All of that got better.
But some things didn’t.
To this date, nearly six years after my “recovery,” I continue to experience difficulty concentrating. My ability to create new memories is drastically reduced. I forget names and details of people I knew very, very well. And in the past six years, it hasn’t gotten any better.
Honestly, it almost feels as if the virus indiscriminately pulled a razor blade through my brain, severing old memories at random, and on its way out dropped glue in its tracks to make it hard to create new ones.
In discussions I’ve had with many covid long-haulers, both in the ER and online, I’ve heard so many describe symptoms similar to what I experienced in the months after my illness. The fatigue, “brain fog,” and feeling better some days and worse the next.
An article published in the Los Angeles Times this summer by David Lat, founding editor of the Above the Law legal blog who spent 17 days in the hospital including 6 days on a ventilator after he fell ill, said what many other long-covid patients feel:
“Recovering from a severe case of COVID-19 is not like switching a light on or off. It’s more like a dimmer switch, where the light gets brighter, then darker, then brighter again. . . . Before I came down with COVID-19, I could run for miles. After returning from the hospital, I needed a wheelchair to go even half a block.”
So what research do we have for covid-19?
So much of what we know about long-haulers is actually from long-haulers themselves. Groups such as Body Politic (@itsbodypolitic) led the first detailed patient surveys and have set up expansive support groups.
Their findings were further supported in July by a study from the Centers for Disease Control and Prevention showing that 35 percent of covid-19 patients had not returned to their usual state of health when interviewed two to three weeks after testing. Those with chronic conditions were affected the most. But even among young adults ages 18 to 34 with no chronic medical conditions, nearly 1 in 5 reported they had not returned to their usual state of health 14 to 21 days after testing. This is particularly concerning as outbreaks are now emerging at college campuses.
And there are reports that even younger children are having to deal with long-term covid complications. This is beyond the hundreds of cases you may have read about of multisystem inflammatory syndrome in children (MIS-C), often weeks after a covid-19 infection.
Although covid-19 is primarily defined by its respiratory symptoms — low oxygen, pneumonia, acute respiratory distress syndrome (ARDS) — it impacts nearly every organ system in one way or the other. This is true for the acute (early) infection but likely defines the long-term and chronic impacts as well.
What percentage of those with covid-19 are affected with long-term symptoms?
We don’t know for sure, but multiple studies have suggested approximately 10 percent of people experience prolonged illness after covid-19. At even a fraction of that, the toll is huge given that 6.7 million people in the United States so far have gotten the disease (and more than 30 million worldwide).
Lasting heart issues
A study from Rome showed the overwhelming majority of hospitalized patients still struggled with symptoms 60 days out. Fatigue, difficulty breathing, joint pain and chest pain persisted in many. About 87 percent still had at least one symptom, and 55 percent had three or more.
Covid-19 has been associated with many long-term cardiac problems, including inflammation of the heart muscle (myocarditis) or the sac around the heart (pericarditis), as well as abnormal heart rhythms. Some may develop cardiomyopathy, a disease of the heart muscle that prevents the heart from pumping effectively.
A few studies have already outlined the longer term cardiac impact of covid-19. A small one from Wuhan, China, showed a majority of recovered patients (15 out of 26) who were tested with cardiac magnetic resonance imaging had sustained cardiac involvement at a median of 47 days after symptom onset — primarily edema, fibrosis and impaired contractility of the heart.
Another from Germany showed that among a cohort of 100 people who had recovered from covid-19 (average age 49), 78 percent had cardiac involvement and 60 percent had heart inflammation seen on MRIs on average two months after symptom onset. Many also had impaired heart function
Respiratory, kidney problems
Unsurprisingly, given that it’s primarily a respiratory virus, emerging data indicate that many patients must deal with lung damage and “experience persistent respiratory symptoms months after their initial illness.”
Like SARS and MERS (where 30 percent had persistent lung abnormalities after their acute illness), breathlessness and cough are commonly reported long after recovery from covid-19. Many also have fibrosis (scarring), bronchiectasis (damage to bronchial tubes) and pulmonary vascular disease.
But we also know that patients who have been on ventilators and who are given pulmonary rehabilitation early on have better and faster resolution of underlying damage and symptoms.
Those of us working on the covid-19 front lines saw how this disease caused kidney injury or failure in so many patients admitted to our hospitals. At the Mount Sinai Health System, in New York, during the peak of the pandemic there, 46 percent of patients admitted with covid-19 had some form of acute kidney injury; of those, 19 percent required urgent dialysis.
“The next epidemic will be chronic kidney disease in the U.S. among those who recovered from the coronavirus,” said Steven Coca, associate professor of nephrology at Mount Sinai and one of the authors on the study, in a published interview last month.
The neurologic system seems to have the most diverse aftereffects of covid infection, such as persistent headaches, anosmia (loss of smell), long-term disability from stroke and some relatively rare conditions — among them encephalitis, cranial neuropathies and even myasthenia gravis (a neuromuscular disorder causing weakness).
There are also many case reports of covid-19 patients with Guillain-Barré syndrome, an autoimmune illness that causes altered sensation and motor function, primarily in the legs and arms. This was something we also saw with infections from the Zika virus a few years ago.
And there have been loads of studies about anosmia related to covid-19. In many, this was reported in 30 to 60 percent of covid cases. Thankfully, most episodes resolved in two to three weeks, but for some, symptoms persist beyond that.
In addition to the neurologic impact, the mental health manifestations of long-covid can be profound. According to a report in STAT, “1 in 3 patients recovering . . . could experience neurological or psychological aftereffects of their infections.”
The mental health toll of this pandemic has been hard on everyone. But for long-haulers, the extra stress of being sick and not knowing if or when you’ll feel better is an added burden. Support groups are helping many, but we need more resources.
So what’s next? What do we need to do to better understand long-haul covid? Here are my suggestions:
Recognition. One of the hardest things for long-covid patients is actually just being believed that their symptoms are real. They’re often dismissed as “anxiety” and the patients are “reassured” they’ll eventually get better. The problem is that for doctors like myself, this is all so new and we really don’t know what the trajectory is — or how to affect it. We all need to recognize that many people — even many months after their initial illness — may still not be recovered.
Resources and rehabilitation. In addition to support from family and providers, long-haulers need access to whole-patient care, including specialty providers and early rehabilitation. We know that for many that can help a lot.
Research. We need to make long-haul covid a research priority for medical and public health institutions, including the World Health Organization and CDC. This won’t be confined to the United States — patients with long-term covid-19 complications exist all over the world. We need to study this more urgently.
“We must move long-haul covid from anecdote to something that is routinely quantified and monitored, as is currently being done with deaths and positive tests,” Nisreen A. Alwan, associate professor in public health at the University of Southampton in the United Kingdom who has suffered prolonged symptoms herself, wrote in the Lancet. “We must define and measure what ‘recovery’ means, focusing on how long symptoms last, how severe they are, how they impact someone’s quality of life, and the nature of when and how they appear.”
I heartily agree. We urgently need more insight into how health-care providers can best help long-haul covid patients. This includes the “whole-patient approach” to look more broadly at their health problems and assist patients with setting achievable targets for self-management.
While there is much we don’t know about long-haul covid, there is still a lot that we already do know: That it is real, that the toll is huge, that dealing with it is daunting.
If you want to know just how daunting, read bit.ly/Paul_Garner_long-haul by Paul Garner, a professor of infectious diseases at Liverpool School of Tropical Medicine in England, on his struggle to “accommodate” his long-term symptoms after getting covid-19.
Like Garner, many people struggling today might still be recovering after this pandemic eventually recedes. We need action to address this now.
Craig Spencer is the director of Global Health in Emergency Medicine at New York-Presbyterian/Columbia University Medical Center. He wrote about his experience tending covid-19 patients in a March 24 op-ed in The Washington Post: “What it’s like being a New York ER doctor during this pandemic.”