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In this video, Fernando Carnavali, MD, of Mount Sinai's Center for Post-COVID Care in New York City, discusses the strategies for managing long COVID and what we still don't know about this often debilitating condition.

The following is a transcript of his remarks:

The population of post-COVID, long COVID, has changed over time. I think that one of the most significant changes is that the population is more aware of these chronic conditions, and I think that the uncertainties are still there.

The more people that are aware -- and these are people that perhaps were with symptoms for many, many months, perhaps people that were with symptoms for years by now -- but these people now with information more available and information from centers like our center in the Mount Sinai system [are] becoming aware not just of the symptoms, but also the resources that are there. So, we are seeing new patients actually every week at our centers.

When we talk about post-COVID conditions and long COVID -- you know, there are five different definitions that you can find out there ... and now there is more consensus into using [the term] "post-COVID conditions" -- what we know is that talking about optimal treatment may not be the most appropriate way to think about treatment in general for post-COVID.

We do not have a definition. We do not know the pathophysiology of the disease. We don't have biomarkers. What we can do is just individualize the care and try to carefully put in place programs where patients are adapting to these new chronic conditions that they have as a part of their post-COVID.

I think that in our approach, which is just helping to adapt to the chronic condition and making proper referrals within the Sinai system -- we have a group of different subspecialty providers dedicating their time at the Center for Post-COVID Care, and they have seen hundreds of patients -- one of the most important things is just adapting to the chronic condition that now is affecting you and modifying and challenging every single aspect of your life. So, we try to individualize care to be sure that you're not overexerting yourself, neither physically or emotionally, because we know that if you do so, the symptoms can worsen.

There are different approaches. We have, for example, the Stasis group that is looking into breathing. You know, we breathe 20,000 times a day, and 80% of us do not breathe well. So if we concentrate on that, perhaps some of the symptoms may improve. There's another group that has been working with rheumatological diseases and carefully looking into triggers of symptoms. While, again, not modifying and providing a treatment in itself, [it's about] really looking at what makes things worse and trying to help you avoid them. With the help of technology and an app and a personal coach, they have found that they can help some of our patients.

Then there's another approach that is out there -- many people are trying many medications. We believe that there's risks involved in trying treatments that have not been proven to work. So, different approaches.

Again, the most important thing, until we find that biomarker and until we have a better understanding of the disease, is helping you to adjust to the concept that now you are chronically ill. With chronically ill patients nowadays, we know other diseases that do have treatments that were not present before. Being chronically ill today is not like being chronically ill, you know, 20 or 10 years ago. The hope is that there is plenty of research in the Sinai system and other systems within our country that will hopefully provide answers.

One of the things that people do now know, and I think that is important to emphasize, is that as of July of 2020, long COVID can be considered a disability under the Americans with Disabilities Act. I think that that reflects the reality of the challenges of the many people out there affected by this.

This also helps tackle one of the issues, which is dealing with legitimacy and living with uncertainty. These are just very difficult items that we're trying to help our patients to deal with. These legitimacy issues can be both at home and be at work -- so, in different settings. And it's very challenging for our patients how our society grants permission to be ill in the absence of disease. You know, this is not something where you can look at the person and say, "Well, the patient has a post-COVID condition." That creates a different layer of challenges for our patients.

I think that our system, our Sinai system, and our clinics and our Post-COVID Care Centers are in tune with these particular needs, and we have expertise to help patients navigate this process effectively.

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