Long-hauler COVID Clinics Are Open, Skepticism Lingers

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This transcript has been edited for clarity.

Zijian Chen, MD: In May, when we were still seeing hundreds of patients with COVID in the hospital every day, the leaders of the health system set up the Mount Sinai Center for Post-COVID Care, because they felt that given how many sick patients there are in the hospital, there would be a need for them to have follow-up. However, now that the center is set up, we see that more than 50% of the patients coming to the center have not been hospitalized in the past for COVID.

Alejandro Comellas, MD: I started seeing patients with COVID at the University of Iowa (UI) Health Care Respiratory Illness Follow-up Clinic back in March of this year. We had a high percentage of patients coming in at the end of March and part of April. Around that time, we saw many outpatients; two thirds of them were diagnosed with COVID and were managed as outpatients.

Range of Symptoms Associated With COVID-19

Comellas: As patients started coming into the clinic, many of their symptoms were related to fatigue. They described their symptoms as brain fog, shortness of breath, and cough. Some people reported having impairment in the ability to smell.

Chen: Symptoms range from being pulmonary to cardiac to neurologic in nature, and even include persistent blood clots. Some patients report having psychiatric problems that include an increase in anxiety and depression.

We're seeing symptoms in a varied fashion, many of them involving several different organ systems, sometimes completely unrelated. The most common are pulmonary symptoms, where patients would relay to us that they are short of breath.

Comellas: If we're finding any type of lung disease in these patients, we try to classify whether the disease is an obstructive disease, such as asthma or chronic obstructive pulmonary disease (COPD), or whether it is more of an interstitial disease, such as pulmonary fibrosis.

Chen: In addition to that, we're seeing many neurologic symptoms, such as cognitive defects in memory and concentration, as well as peripheral neuropathy and chronic headaches.

With regard to cardiac symptoms, some patients have persistent chest pain as well as paroxysms of tachycardia that are unexplained.

Comellas: People have talked about long haulers having nonspecific symptoms of fatigue as well as discomfort despite having tested negative for lung and heart disease. It seems the symptoms are more related to an inflammatory process, and there are similarities with chronic fatigue syndrome.

This clearly could be part of an overlap of what we're describing as long haulers. We know that these are nonspecific symptoms, but an entity has been identified as a real disease with chronic fatigue.

Chen: Now that we have been operational for several months, we are learning that we can start segregating the patients into two groups. Both groups report prolonged symptoms after COVID; however, only one group of patients has positive test results that relate to their symptoms.

Long-hauler Patients: Skepticism and Stigma Linger

Chen: In our months of experience in treating these patients, what we're seeing is that yes, there are long-hauler patients who had seen doctors before coming to our center. Their concern is that their doctors have not been fully accepting of their symptoms. The doctors have sometimes even been dismissive of what they're feeling.

Comellas: There is a stigma that some people feel they carry with them because they had COVID. Some people are not being seen in healthcare settings owing to a concern about being infectious.

Another topic brought to our attention is the fact that some of these patients are women. There is a bias in society of not being concerned when women report nonspecific symptoms.

Monitoring Outpatients Recovering From COVID

Comellas: Depending on what we find in our assessment, we try to tailor therapies in the recovery clinic, or we refer them to specific areas within our division. We aim to be comprehensive and include physical and respiratory therapists, cardiologists, nephrologists, and other specialists, depending on the organ damage or impairments we're finding in patients who have recovered from COVID.

One of the unique situations that we encountered during the months of March and April was a COVID epidemic in a meatpacking plant. Many of the workers are Hispanic and only speak Spanish. Some of the original challenges we faced were related to communication with the families, because patients were not able to have visitors. In our intensive care unit (ICU) division, we coordinated physicians, who are bilingual in Spanish, to communicate with families and keep them abreast of what was going on with the patients.

This clinic, as we're setting it up, is not only trying to answer some of their unmet needs in the community, but also we're inviting every patient to participate in a recovery registry.

Chen: At Mount Sinai, we have a research registry of patients being seen at the center. The registry serves to track their baseline test results and symptoms, and further track them as their treatment progresses.

Comellas: This is important, because if we identify certain disease patterns in patients recovering from COVID, we can think about whether we need to start clinical trials to have a better understanding of the disease process, as well as therapies that could be implemented and tested.

'It's Not Enough'

Chen: My greatest concern right now about the medical treatment response is that it's not enough. As we know, there are now more than 6 million patients in the United States infected with SARS-CoV-2. Even if we were to take 10% of these patients with long-lasting symptoms, we'll be injecting 600,000 new patients into our health system in need of ongoing care.

Our ability to absorb this large number of patients needs to start now. We need to start building more centers, we need to start learning more about this disease, and we need to start finding ways to make these patients better.

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