The Long Haul of Lasting COVID Effects

Yosef from Monsey was one of the many struck with the novel coronavirus when it first blew through the New York area in mid-March. He was bedridden with aches, fever and a pneumonia-induced cough for more than two weeks. Yosef recalled his fears when he experienced trouble breathing, but he never required hospitalization and by the time Pesach came, he was on the road to recovery.

Remnants of the pneumonia dogged him with chest pain for another month or so, but he slowly returned to his demanding daily schedule. Energetic by nature, Yosef was determined to push himself to live up to his many professional and personal responsibilities, but more than four months after shaking COVID symptoms, persistent fatigue still makes it a daily struggle.

“I feel that I have to fight to do everything I need to do,” said Yosef. “I wake up with a tiredness no matter how much I’ve slept, and even after I push myself out of bed and start my day, every exertion tires me out. Sometimes I think it’s psychological, but I keep on hearing the same thing from friends who had COVID, too.”

Avi from Boro Park had a mild case of COVID, and after about a week of touch-and-go fever and a cough, was back on his feet. Even so, he still experiences bouts of weakness and sporadically low oxygen levels, and his preexisting sleep apnea and hives have worsened.

“I felt much better after a few days of the virus, but then I started to feel this weakness, which still comes and goes,” said Avi. “Part of the problem is you don’t know what to associate with corona and what not to, because there is so much that is unknown.”

Their stories are hardly unique. As the number of recovered COVID patients grows, so too does the commonality of people who report that symptoms persist for months, even after they have recovered. A recent study from the Centers for Disease Control and Prevention (CDC) says that one in three COVID patients experienced at least one long-term symptom, and, among patients in their 20s and 30s, the ratio is one in five.

‘The Best Experts’

Dr. Natalie Lambert of the Indiana School of Medicine recently completed a study of “long-hauler” COVID patients. Based on responses to a poll from members of the COVID Survivors Corps, she identified nearly a hundred symptoms that have stayed with people after their recovery.

Fatigue tops the list by a wide margin. Others that make it to the top 10 (in order of commonality) are muscle or body aches, shortness of breath or difficulty breathing, difficulty focusing or concentrating, inability to exercise or be active, headache, difficulty sleeping, anxiety and memory problems. Yet based on this and other studies, together with feedback from individuals who have recovered, low oxygen levels, hair loss, racing heartbeat and many other symptoms abound as well.

“With so much unknown about the virus, I knew that patients themselves would be the best experts,” said Dr. Lambert. “There is still a lot of research that has to be done on the causes behind this, but it’s clearly something that is affecting a lot of people. My goal was to capture patient experiences both as a guide for medical research and to help doctors realize what the common long-term symptoms are.”

While most symptoms mentioned in the study first appeared after patients recovered, anecdotal stories are plentiful of people whose chronic conditions became more severe after recovery, or who experienced increased inflammation of injuries.

The COVID Survivors Corps, which operates a website and social media forum, was founded by Diana Berrent as she battled the virus in early March. In the short time from then until now, its membership has grown to over 87,000, and its missions include sharing the latest health information and encouraging plasma donation. Mrs. Berrent said that validating and documenting long-lasting aftereffects of the virus has become a major function of the group.

“About six weeks after I had recovered, I developed a tremendous blister on my eye, which eventually went away and left me with something looking like a black eye. After I posted it, I started seeing person after person with the same thing at the exact same time in their recovery. That’s something I would have never connected without this data resource,” she said.

It is increasingly common to hear of recovered COVID patients who have returned to their daily routines while still hounded by weakness and a host of other symptoms that seem not to have dissipated with time. Yet there is also a growing list of those who have been clear of the virus for months and are still beset by health problems so severe that their lives have been significantly altered by constant pains, chronic exhaustion, vision problems or other conditions.

While still experiencing bouts of nausea, insomnia and irregularities in her bloodwork, in light of the severity of many cases she has heard of, Mrs. Berrent does not count herself among the long-haulers. She expresses a hope that the group she now leads can offer what she sees as much-needed support.

“In any other situation a lot of the people with these symptoms would have gone to the doctor, but we are in a situation where we’re being told that if you were infected, don’t seek help unless you can’t breathe. What it’s created is a tremendous population recovering at home with little medical guidance,” she said.

A particularly frustrating experience that many with lingering symptoms have complained of is a dismissive attitude by some doctors.

“I have heard stories of fantastic GPs who observed these symptoms and worked hard to get their patients in for the scans and testing they needed, but I’ve heard more stories of doctors who heard about these symptoms and told the patient, ‘You have anxiety. Go home, take a nap and have a piece of chocolate.’ But when they finally get tested, the patients have [irregular heart rates] or some other very real condition,” said Dr. Lambert. “This definitely is a stressful time, but I am not one to blame anxiety first.”

In some instances, both Dr. Lambert and Mrs. Berrent say, long-haulers have had to struggle with employers and even family members to accept the reality of the health challenges they are still facing. One goal of the group and the ongoing studies is to allow for those suffering with long-term symptoms to harness the information that has been collected.

“It’s a way to educate clinicians,” said Mrs. Berrent. “This allows our members to take the information we have gathered and bring it to their doctor or boss and to advocate for themselves.”

One curious result of the Survivor Corps study was that the overwhelming majority of those reporting long-term symptoms experienced relatively mild cases, with very few having required hospitalization. Furthermore, many were younger. Few had any preexisting condition associated with those seen as being at higher risk for contracting COVID.

Mrs. Berrent stresses that awareness of the prevalence and risks of long-term symptoms is important for the public to consider when weighing the level of precautions they take regarding the virus.

“There’s a feeling people have that ‘even if I get COVID, as long as I’m young and healthy and stay out of the hospital, I’ll be fine,’ but this is not just a matter of life or death — there’s a middle bucket here that you do not want to end up in.”

Healing the Healed

As the ranks of recovered patients grows, so too does the need to address the medical needs of those suffering with a wide variety of aftereffects. In some areas where the initial flood of cases has subsided, hospitals have begun to set up centers for post-COVID care.

Last month, Monmouth Medical Center’s Southern Campus (MMCSC) in Lakewood opened its COVID-19 Survivors Rehabilitation and Recovery Program.

“There are many patients who recovered for the most part, but that have a lot of residual problems,” said Dr. Charles Markowitz, Medical Director of the Department of Rehabilitation and Section Chief for Physical Medicine and Rehabilitation for MMCSC, who heads the center. “Weakness seems the most widespread. Many others have problems that affect the brain, lungs, nervous system, endocrine system, trouble walking — all kinds of conditions that highlight the multi-organ affect this virus has.”

Due to the large variety of symptoms being presented, MMCSC’s center first gives patients a questionnaire and, after an initial examination, directs them to the appropriate specialist to assess their issue and design and execute a treatment plan.

While symptoms like fatigue often remain unclassified, other symptoms lead to diagnoses of specific heart irregularities or other conditions that, it seems, COVID can leave in its wake. Another large category of people being treated in recovery centers are those who suffer from conditions likely rooted in the extended hospital stays that many endured.

Ailments of people in this set vary greatly. Some suffer from joint pain and weak legs or bed sores from lying in bed for weeks on end. Others, who needed medicines to keep their blood pressure from dropping to levels that would endanger their lives, are left with kidney damage. A set of cognitive problems stems from lack of oxygen, and some who were on ventilators still have trouble swallowing.

“We were well-positioned for this endeavor. When the pandemic was spiking, we had so many hospitalized cases that many of our nursing, respiratory and therapy staff, and pulmonary, cardiology and other doctors, have become COVID experts,” said Dr. Markowitz. “I think centers like this are going to be increasingly common as we work through the problems that recovering patients are having.”

The Roots

Medical researchers are still struggling to better understand the underlying causes of the long-term COVID symptoms, as well as how one virus can cause such diverse aftereffects, ranging from body rashes to heart palpitations.

Dr. William Petri of the University of Virginia, who both treats COVID patients and is engaged in multipronged research on the disease, said that persistent symptoms are found in many strains of virus.

“Fatigue, especially, is something you see with influenza and other viruses. The most notorious is dengue fever, which can leave people with an overwhelming fatigue that can last for months, similar to what we are seeing in some COVID patients,” he said.

Even if recovered patients have persistent symptoms, most no longer carry or can spread the virus itself. However, Dr. Petri recently penned an article drawing attention to the possibility that COVID might be able to remain in a set of what is known as immune-privileged sites in the body. These are areas that are protected from the inflammation caused by the immune system’s battles against infection, but which as a result take longer to be rid of the virus — even after the patient makes an apparent recovery.

While this phenomenon might be linked to some level of viral spread, it has little effect on lingering symptoms. One exception might be the many people who still have not regained their sense of taste or smell, as olfactory neurons are a protected site.

Theories about the causes of other symptoms may lie in the nature of the virus itself.

“It seems likely that there is some degree of immune dysregulation after the body had to respond unnaturally to fight the virus, and it just hasn’t reestablished equilibrium after mounting its defense,” said Dr. Petri.

Much has been written about the multi-organ nature of the attack COVID makes on people and the grave danger that can cause in severe cases. Dr. Markowitz posited that the phenomenon was likely the cause of varied lingering symptoms as well.

“There are other viruses that have aftereffects, but I’ve never seen anything to the degree we have seen with COVID-19,” he said. “Spikes that you see around images of the coronavirus may attach to cell receptors that line blood vessels, the respiratory tract, the heart, and many other organ systems throughout the body. That could leave a person not only with residual respiratory problems, but also with damaged heart cells, or lingering impairments involving muscles and the nervous system.”

A silver lining for long-haulers is that, based on the track record of existing viruses, many doctors think it is likely that most symptoms will resolve with time.

“With other infectious diseases, post-infection resolves itself after a year,” said Dr. Petri. “It’s even hard to do studies on them, because when you try, the patients have usually recovered.

“There’s a lot about these symptoms that we don’t have enough understanding to treat properly, and there is a lot more research that needs to be done,” he continued. “Sometimes we have to acknowledge that if a doctor’s mantra is ‘first, do no harm,’ then holding off until history is able to teach us more about some aspects of post-infection COVID might be the best, but hardest, route to take.”