We had Dancing Queen, we had The Winner Takes It All, we had Mamma Mia, we had Knowing Me, Knowing You, and Take a Chance on Me. You don't have to take a chance on me, I'll be solid for you, I promise. Welcome back to the Rehabilitation Medicine Show. I'm Dr. Jonathan Whiteson, one of the professors of rehabilitation medicine at NYU Langone Health at Rusk Rehabilitation. In a very few moments, Dr. Monica Verdugo Gutierrez and Dr. Talia Fleming will be joining me before I formally introduce them. As we ended out the first half hour talking with Shamir Smith and Dr. Benjamin Abramoff, I had an email, came in from Joanne, it said, can either mRNA vaccine, that's the Moderna or the Pfizer vaccine, can either help prevent symptoms like brain fog, headaches, et cetera, that Shamir is having? So it's interesting, in terms of people who have long haul symptoms or PASC, post-acute sequelae of COVID, when they've received their vaccine, some have said they feel worse for a few days, some say they don't feel any change, and some say they feel better and actually stay better. I'm not sure that we fully understand who or why people feel worse the same or better, but some people have improved. I don't think we have any data yet in terms of those people who get vaccinated and then have a breakthrough infection, whether they are having significant PASC symptoms. I haven't seen that. Maybe my next two guests have seen those kinds of breakthrough infections and whether those patients have had long haul symptoms or not. But let me ask that question once I have formally introduced them. But let me say, good morning, Monica, hello. Hi, how are you? I'm good, Monica, thank you so much. Dr. Monica Verdugo Gutierrez is professor and chair of the Department of Physical Medicine and Rehabilitation at the University of Texas Health Science Center at San Antonio. And Monica directs the post-COVID recovery clinic and aids in the rehabilitative recovery of patients with functional mobility and cognitive deficits after coronavirus infection. She also serves on the Inclusion Engagement Committee for the American Academy of Physical Medicine Rehabilitation and Dr. Talia Fleming, good morning, Talia. Hi, good morning. Good morning, thank you so much for joining us and for our listeners. Dr. Fleming is medical director of the Stroke Recovery Program, Post-COVID Rehabilitation Program and Aftercare Programs at JFK Johnson Rehabilitation Institute at Hackensack Meridian Health. And is also assistant professor at Rutgers Robert Wood Johnson Medical School. So Monica and Talia, I don't know which one of you, whoever jumps in first, have you seen, in terms of this email that I read out before, in terms of people who have been vaccinated and then get a breakthrough COVID infection, have you seen any people like that having long haul symptoms? Monica, why don't I start with you? What are your thoughts on that? Have you seen that? So I've had patients, I think by the time I'm seeing the patients, a lot of them had COVID before the vaccines were out. And I've not, I've only maybe now just have had my first patients who were vaccinated and then get a breakthrough infection with COVID. So still more to come on what's gonna happen with their long COVID symptoms. But I did see a report recently that came out the patient led research that the COVID patients are leading that's saying, yes, there's a high percentage of patients with long COVID, even if they get breakthrough infections after vaccination. That's interesting. I haven't seen that yet. Yeah, very interesting. Talia, has that been your experience too? Yes, very similar to what Dr. Verduzco Gutierrez has described. And I'm also familiar with the literature that I think you mentioned, and patients that without prior COVID, about one third of them after they do have COVID and then get the vaccine, what about one third or so report that they are better, that there are some of their post COVID symptoms have resolved, about one third have about no change and another third say that they actually feel a little bit worse. So I think the jury is still out in terms of, just like you mentioned, in terms of the groups that will do better or worse with this. Talia, let's stick with you right now. I was talking before the break, before you guys came on with Dr. Abramoff about the collaborative that the three of us and Ben, as well as Shamir Smith from Bali Politic have been involved with. Talk to us about some of the more significant long haul symptoms and explain to us this sort of process in terms of the collaborative, the guidelines that we're building and producing. So talk to us about the common symptoms that we're working on and the process of writing guidelines. Sure, so some of the most common symptoms or health complaints that patients will report with long COVID or with PASC, about the overwhelming majority have this fatigue, about 80% or so will describe this fatigue where it's very, very difficult to do even basic simple tasks like self-care, moving around within their home. I have a patient who said it was difficult for her to help her child complete their first grade homework. So very, very debilitating in terms of this fatigue. Also, they'll complain of malaise and specifically a post-exertional malaise, meaning that after they exert themselves for a particular activity afterwards, they get very tired. Also, patients will complain of brain fog or trouble with their memory, their thinking, their concentrating, multitasking and attention. Some of the other symptoms that patients will describe are also heart palpitations, numbness and tingling in their arms or their legs, insomnia, dizziness, weakness, headache, joint pain. So it's really a large constellation of symptoms that patients can present with. In terms of the PASC and the AAPMNR collaborative, AAPMNR decided to take the lead in terms of developing a multidisciplinary PASC long COVID collaborative. And it really is truly multidisciplinary. We have active involvement with physiatrists, with internal medicine, with neurologists. In addition to physical occupational speech therapy, we have neuropsychologists that are part of the group. We have patient advocates as well as government representatives. And the idea was for us to develop specific consensus guidance statements, including member voting, really on what are the best recommendations for what we know thus far. So within each collaborative, there's different writing groups and each topic, the writing group comes up with specific guidance statements. So for example, the one that's gonna come out first is a guidance statement on fatigue. The one right after that is cognitive impairment. We have one coming up with breathing, with cardiac and autonomic instability, as well as interesting things like infrastructure. So for example, what does it take to build an infrastructure for a post COVID clinic? And what's really interesting, and I just wanna commend the AAPM&R for this, they really took it a step further by knowing that health equity is extremely important. Health equity is gonna be a part of each and every specific consensus guidance statement. Yeah, that's really, really important. I'm gonna ask Monica about health equity and about inclusion and engagement in a few moments. But Talia, when these guidelines are produced, are they going to be clinician oriented and facing? Are they gonna be patient orienting and facing? How will they be used to help improve the situation that we have now in terms of with so many people suffering from Long Hauler symptoms? So initially, the guidance statements are gonna be published in the PM&R journal. And so initially, it's gonna be geared towards clinicians that are serving patients. I do see us potentially taking this a step further and developing different health literacy modalities because really all hands need to be on board at this point. And so we're gonna have to find a way to interface with patients, be it via media, be it via print materials, be it audio similar to your show. We really will need to get the word out that rehab is here, that rehab can help, and that patients don't have to suffer in silence. So I see this being a multi-step process. The first step is to really get something out. They mentioned in one of our collaborative meetings that really physiatry is one of the ones that's taking the lead on this. And it makes sense because we're used to seeing patients from head to their toe and taking care of the whole person, not just one specific organ system. So the initial wave of this is to get initial guidance statements out. And then as things progress, we'll see where we need to make modifications to help the most amount of people. I wanna remind our listeners, you are listening to Dr. Radio. This is the Rehabilitation Medicine Show. I'm Dr. Jonathan Whiteson. My guests are Dr. Monica Vodouko-Gutierrez and Dr. Talia Fleming, both Monica, Talia, myself, and Dr. Abramov, who we spoke with earlier on. We are physiatrists. We are part of the American Academy of Physical Medicine Rehabilitation. We believe we're central to the recovery of individuals who've had COVID and are suffering from past post-acute sequelae of COVID. And we are developing, as Talia mentioned, these guidelines for the management of the major symptoms of post-COVID, including fatigue and post-exertional malaise, the cognitive issues of brain fog, cardiovascular and neurologic issues, breathing issues, et cetera, really very important. And these guidelines will be published soon and will help influence and guide the care of individuals with COVID-19. Of course, the lines are open. If you have a question for Dr. Vodouko-Gutierrez and Talia Fleming, please do call in, ask your questions about post-COVID care and management, 1-877-NYU-DOCS. It's 1-877-698-3627. Monica, Talia mentioned about health equity. Health equity is what we strive for. My cynical side or maybe my realistic side tells me that we have health inequality. We do not have health equity. We have disparities. Talk to us a little bit about what the COVID pandemic has unearthed and what you as a physician and practitioner, but also in terms of the AAPMNR collaborative and these guidelines, what are we doing to improve health equity, to unearth disparity and to reverse that trend and to make things equitable? Talk to us about the current situation, who this is impacting, what are we doing to reverse it? Sure, thank you. I think we have great data right now about patients who are hospitalized and patient mortality, unfortunately, where we do see the inequity in who's affected more by COVID. Yes, we know the elderly is, but along with that age, it's also minority groups, Black, Hispanic, Native American groups that are disproportionately getting higher percentage of COVID and higher percentage of deaths from COVID compared to other groups. We do not, unfortunately, have as much great data on what is happening to these patients after the fact and who's getting access to rehabilitation. I think it just makes sense to know if they're having a higher burden of disease and getting it more often, then they're more likely to have long COVID as well. But is that what we're seeing in our clinics? And I think if, you know, we have the large collaborative with multiple clinics working together and probably that is not what we're seeing in our clinics. So we already know that those groups that are overrepresented are underrepresented in long COVID clinics. And these are groups that we need to work on. And so that's why through the AAPMNR, we've come together and we have a health equity task force and we're ensuring that as we create these guidelines that these points, these issues are being brought up for each of the topics that we're addressing, knowing that underrepresented or minority groups are affected more and what can we do to ensure that they're getting the best care and to take bias out of what we're doing. And, you know, I think we have really also gotten some of the patients involved in that as well. So it's very important to have a diverse group working on it, diverse voices, diverse specialists and diverse patients as well, working together to make improvements on outcomes ultimately. It's very, I hate to use the word interesting. It's not the right word, but it is interesting. It's of significance that health equity plays such or inequity plays such a significant role in COVID-19, who gets it and who's impacted, who's hospitalized, who dies, how do we respond in terms of the post-COVID care clinic and the collaborative, the work that we're doing. Help us understand a little bit more, how does this work? You know, it's almost like if you don't know it, how do you unearth it? How do you look? How do you get to the root of the problem? I think there's been a lot of discussion about vaccines and vaccinations and vaccination rates are low amongst minorities as well. You mentioned black, Hispanic, Native Americans and we know that these populations also have low rates of vaccination. So how do we get down? How do we understand? How do we start to build a solution and gain, achieve health equity? Oh, that's the million dollar question. But I think the first part is data and education. So I think the fact that we're looking at it, that we are saying, hey, this is important and we're putting it into our statement, then hopefully as people, as other physicians read this, as we get this out into the community, as we get it out to physicians and other specialties that they say, hey, this is a big issue. But then we have to work in our systems as well. In our post COVID clinic, we actually have two clinics, one that's our regular clinic and then we have one that's in our safety net hospital clinical setting. And so that we can see patients who are underserved, have county insurance, don't have insurance and make sure that their primary care physicians know that we offer this service so that they can be referred into our clinic. Working within your hospital systems, make sure that it's something, they will get behind it, they will be supportive of it. And that also it's important that we train diverse physicians to be able to take care of this population because I think these minority populations will more likely listen to physicians who look like them, come from their background, understand where they're coming from. Of course, that's a long-term goal, but again, something that I always look, what can we do now? What can we do for the long-term as well? Completely agree. You're listening to Dr. Radio on 06M Channel 110. We're talking about COVID and COVID Rehabilitation Strategies with Dr. Monica Vodouko-Cudieres and Dr. Talia Fleming. We have about five or six minutes left in this segment of the show. The lines are open. If you have a question, if you yourself have long-haul symptoms or syndrome or someone who, a loved one, someone who you're caring for does and you have a question for our experts here, give us a call, 1-877-NYU-DOCS. That's 1-877-698-3627. We're happy to take your calls and guide you with regards to the management of your long-haul symptoms. Monica, just one more question for you right now. And that is, through this process, through the year and a half that we've been experiencing, but also through the collaborative and the discussions that we've been having through the guidelines, what have you learned? What's changed in your practice in terms of how you're delivering care to your individual patients? What have you learned through this time, but also through this process of developing the guidelines and the collaborative? I think what I've learned most is flexibility, just because things, what we're learning, is changing all the time. And so both being flexible in the type of practice, meaning adopting a lot of telemedicine, so I'm doing a lot of telemedicine now, it's really helpful for some of the patients who have long COVID to be seen and followed up that way. Just because, like we talked so much about how fatigued they get in post-exertional malaise, some of them, it's a big deal to try to get out, get out of their home, go to a doctor's appointment, park, walk into a building, when they could just do an appointment from a computer in their home. Again, that means they have to have a computer in their home, going back to health equity. But offering those services and being able to have flexibility that way, also knowing that things change, and we're learning stuff all the time. And I love being on the collaborative calls because I learn things from my colleagues as we go. But I think it's also important that all these things that we're learning, we disseminate that information out to other physicians who are treating these patients and getting the message out that rehab is key, that even if it's very, very guided and slow activity-based therapy, that it's gonna be important supporting patients, education, filling out disability forms when patients need disability forms filled out. And I think the other thing that really I've learned through this process is that these clinic visits take time, that this is not a in-out 10, 15-minute visit. No, it is not at all. These are longer visits where patients need to be heard. These patients often, we talk about health equity and they go places and they feel like they're just shooed by, gas lit, and we have to listen what are the issues and be able to try to address those. Very, very important. And that's something that Shamir Smith said as well. She and the patients and people who she represents on BodyPolitik, they want to be heard. Thank you, Monica. Talia, my last question for you, and that is, through all this work that we've been doing, how do you see the future? What do you think is gonna change in the future in terms of the guidance and advice we give to patients as they're trying to recover from long COVID syndrome? So that's a really great question. And I feel like in healthcare, we have a unique opportunity to do something big and to do something substantial and to think outside of the box and to push the envelope. And so oftentimes, after I'm seeing patients after a long day, like Dr. Rodrigo Gutierrez just mentioned, I often ask myself the question, if patients find me and if I can direct them, will they have access to the care that I know that they need? And this goes to the AAPMNR. They put together a call to action back in March of 2021, and they addressed it to President Joe Biden and his administration and really called for urgent action to develop a national crisis management plan. And it looked at three specific areas. One was the resources to build necessary infrastructure. Two was to provide equitable access to care for patients. And three was to advocate for research. And so in thinking about that question, number one, if patients find me, that's the infrastructure. Patients need to know that we exist and know how to find us. The second area is, and I direct them. So we need to really invest in the knowledge and the research. We need to know what the successful strategies are and customize them for every single person, for every patient's need, because every person is different and their needs are different. And then the third area is, will they have access to the care that I know that they need? So we're gonna need to develop easily accessible solutions that are low to no cost, culturally sensitive, available in multiple languages, really taking into account the patient's educational level, learning style, and disability. And so this is not only a national challenge, but really a global challenge. And how do we think outside of the box and make sure that patients get the care that they need? Talia and Monica, so eloquent, so clear in what you say and what you state and really represent the AAPMNR physiatry and the needs of individuals who are suffering from post-acute sequelae of COVID or lung COVID disease. Thank you so much. Sadly, we're out of time. This has been a vibrant conversation. Dr. Monica Verduzco Gutierrez, Dr. Talia Fleming, thank you for your work that you do on behalf of all patients with COVID-19. Thank you for being on Dr. Radio. Thank you for being friends and colleagues and teaching me. Monica and Talia, have a great day. Thank you. Thanks for having us. All right, take care. Remember, life's a journey, exercise through it, get your vaccine. And I'll be back with you next week on Dr. Radio.

long COVID

post-COVID care

symptoms

health equity

telemedicine

guidelines