Lingering COVID-19 symptoms in many patients may be the last and most insidious wave of the pandemic, since people who have been infected experience a prolonged, sometimes changing array of ill effects. The concern is that a subset of these cases will develop a kind of chronic COVID-19 that becomes a lifelong condition.
By definition, “post-COVID conditions” that continue more than four weeks are called long COVID, and a variety of other names, the Centers for Disease Control and Prevention (CDC) reports.1 These include post-acute COVID syndrome, long-haul COVID, and, for research purposes: post-acute sequalae of SARS-CoV-2 infection (PASC). Standard case definitions still are being developed, but the signs and symptoms include respiratory struggles, fatigue, post-exertional malaise, poor endurance, “brain fog” or cognitive impairment, cough, chest pain, headache, palpitations, and tachycardia.
“Post-COVID conditions can occur in patients who have had varying degrees of illness during acute infection, including those who had mild or asymptomatic infections,” the CDC states. “Medical and research communities are still learning about these post-acute symptoms and clinical findings.”
One state-of-the-art program focusing on both treatment and research is at two Nuvance Health facilities in New York and Connecticut. Sharagim Kemp, DO, a primary care physician, is the coordinator of Nuvance’s COVID-19 Recovery Program (CRP).
On virtually every front, there is more unknown than known about this malingering condition, but we asked Kemp to comment on her relatively new program on long COVID. She spoke with Hospital Infection Control & Prevention (HIC) in an interview that has been edited for length and clarity.
HIC: Are these long COVID patients considered infectious and are they treated in hospitals?
Kemp: All of our COVID Recovery Program (CRP) patients are outpatients. As far as what we know right now, these patients are not actively infectious. CRP patients are considered not infectious, as they are several weeks out from their initial diagnosis and early onset of their first symptoms. We also always defer to our infectious disease experts, who are part of our CRP program, if there is ever a question as to a patient’s status. And we offer telehealth appointments.
In general, we screen all patients — not just [CRP] patients — for signs of infection, including fevers, and all of our facilities maintain social distancing and masking protocols. Physicians especially have appropriate gear when it comes to any type of patient care.
HIC: More and more healthcare workers are getting vaccinated. Do you recommend COVID-19 vaccine to people who are experiencing these long-haul symptoms?
Kemp: We do. Interestingly enough, in the unified data we have seen, individuals who get vaccinated are actually having some resolution of their symptoms. Can we explain why? Not with certainty. It could have to do with the immune response in general — maybe a different immune response that overrides what is already occurring.
Of the patients I see in New York, approximately 75% have noted some improvement in their symptoms after vaccination. Not complete resolution — but improvement. I would recommend long haulers get vaccinated if they have no underlying issues with getting vaccinated in general.
HIC: When was your program founded and how it is structured?
Kemp: We launched our program in March 2021. We have two sides to our system, one in Connecticut and the other in New York. Up until the time that we launched it, we were not doing marketing. We were doing a very small introduction to the process.
Now we have about 100 patients enrolled, and we are trying to ramp up marketing to increase exposure. We really wanted to get a sense of building the program first.
In January 2021, we all came together as a group and put together many different individuals to create a multidisciplinary approach to care. We have a very robust group of specialists who are all directors in their fields — psychology, neurology, pulmonary, critical care, cardiology. All of these individuals have stepped up to create this program, which has a primary care physician at its base.
HIC: Does that mean the primary care provider refers out to the specialists?
Kemp: There are lot of different approaches to recovery of post-COVID syndrome or long haulers. The primary care physician who is doing [this type] of COVID recovery is an individual who is well-read in the area, has had a lot of experience, and has dealt with all the nuances. This primary care provider deals with COVID and COVID only. We make sure the primary care physician is in the loop the entire time. We make sure to create access to care by providing and offering inpatient appointments that are primary care within the system. [If referred to the CRP], the patient comes into what we call a “circle of care.” The pivotal point of the circle is the patient. All of us involved work together to create the best comprehensive program vs. sending the patient to [outside] specialists, where they have to wait for the appointment and then wait for any results to come back. I am in primary care myself and I am very aware of how tasking that process can be for a patient who is already feeling ill. We take that out of their hands. We make the appointments, do the follow-up, and do all those little things that a primary care office might not have the time for and the patients themselves may not have the energy or the will to do. Our directors of their respective programs have dedicated the time in their schedules to see these patients within two weeks, which is unheard of when you seek a specialist.
HIC: Are there any breakthroughs yet in treatment of this condition?
Kemp: What is interesting about this process is that it was born out of research. COVID recovery programs came to be because of the need to have a localized place where all this research comes in and all these data [are] filtered through. I wish I had a magic bullet. I don’t. What I do have are comprehensive care plans that seem to be working better.
I am the COVID Recovery Program lead for the system, but I am also the primary care physician seeing the patients at the New York [facility]. I am taking that on myself simply because I want to be able to create the best possible experience for the patients. I have been in primary care for close to 20 years. What I have found is really the art of medicine is listening to individuals; we have hour-long visits where we examine everything from head to toe. A lot of times patients are just grateful and appreciative — not to say that their own doctors wouldn’t want to do that. It’s just impossible in today’s world in a clinical setting. We spend that hour so that we can identify factors that can influence their health.
HIC: Can you give some examples of the care you are delivering?
Kemp: Some of the things we are working through is the neurology piece in dealing with brain fog. These patients may need ancillary physical therapy or occupational therapy (PTOT) where we teach them how to adapt their energy expectations. It is a big broad concept, but a lot of times what is happening with people with COVID is they are pushing themselves to get better. It’s a natural phenomenon — as human beings we are going to push ourselves to get better. Unfortunately, with COVID the harder you push, the harder it pushes back. We literally retrain individuals. You know the concept of zero to 60. We actually go back from 60 to zero. We teach them they need to slow it down with breathing exercises, how to increase exercise tolerance, and to improve muscle energy reserves. A lot of these variables are in a whole-person holistic approach. There are defined articles and data out of Europe and large U.S. centers where these individuals use specific healing therapies that will teach them to retrain their bodies to do something as simple as going up and down three flights of stairs without being winded.
HIC: What percent of total COVID-19 case are estimated to develop long-term COVID, fitting the CDC definition of symptoms beyond four weeks?
Kemp: There [are] a lot of different data out there. The European models initially estimated 10% of [infected cases]. But this [condition] is a very underestimated. At the height of COVID, we had anywhere from 40% to 60% of individuals who would have at least one lingering symptom.
What I would say in my experience with COVID since day 1 — and I have been dealing with this since day 1 — is at the low end of percentages, one out of 10 will experience some type of lingering symptoms. The severity of that symptom may be fatigue, insomnia — may be the milder versions. I estimate [overall] that I am seeing closer to 30% to 40% of individuals who are experiencing lingering symptoms. Now whether or not they are seeing that as a debilitating symptom is very different. We are not telling everybody you are a long hauler and you need to be in this program. Remember, time is sometimes the best healer.
HIC: So even with the low estimate of 10%, with some 34 million cases reported in the United States as of mid-July, there could be several million people with long haul COVID. Has a natural endpoint for the condition been established yet, or can symptoms continue indefinitely?
Kemp: The data [are] still evolving and that is part of our research. The most important part of our program is that we provide integrated services, ancillary services, PTOT, massage, acupuncture. The other part of it is research. You don’t have to be a part of research, but if our patients want to be, we tell them we appreciate it and we might learn things like is this going to be a condition that lasts? I’ve seen patients who had COVID day 1, when this country shut down, and are still having symptoms. I have also seen patients who had COVID six weeks ago and are still having symptoms. Our timeline is only since the pandemic began. Because of this, we have to be patient with all the data. But, unfortunately, there are individuals who are suffering 16 months later with these symptoms.
HIC: Do you think it will be necessary to have many programs like yours and special clinics for these long COVID patients even after the pandemic has ended?
Kemp: I hope not. I hope we are going to help these patients. I think, unfortunately, we are going to have a subset of those who are going to be suffering just like we have seen with chronic Lyme [disease], chronic pain, and chronic fatigue. There is going to be a group of individuals who will always need this multidisciplinary approach, and as the research evolves, hopefully we will be able to nail down very specific treatment plans. Remember, our treatment plans are specifically for the patient. We don’t have general treatment where everybody is treated the same, nor do we have [standardized] medication. Not only will this be the wave of the future, it will also be the wave of healthcare to a certain extent; dealing with individuals who are experiencing disease states that are considered chronic and not treatable.
- Centers for Disease Control and Prevention. Post-COVID conditions: Information for healthcare providers. Updated July 9, 2021. https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/post-covid-conditions.html?CDC_AA_refVal=https%3A%2F%2Fwww.cdc.gov%2Fcoronavirus%2F2019-ncov%2Fhcp%2Fclinical-care%2Flate-sequelae.html