You're listening to Rehabilitative Medicine with Dr. Jonathan Whiteson on Dr. Radio. Welcome back to the Rehabilitative Medicine Show. I'm Dr. Jonathan Whiteson, one of the professors of Rehabilitation Medicine at Rusk Rehabilitation here in New York, part of NYU Langone Health System. We're going to be talking in a few moments about COVID and COVID rehabilitation, and this is such an important topic. We know how many millions of people in the United States, really across the world, are being infected with COVID-19. We know in the United States has been over 600,000 deaths, and that's a tragedy, and that's a topic for another show. But we also know there are so many survivors of COVID-19, some who have no symptoms whatsoever, but so many who have this long-haul symptomatology, these symptoms of the COVID long-haul syndrome, or as we are calling it in the medical terms, post-acute sequelae of COVID, or PASC. And so we're going to dedicate this whole hour to the discussion of PASC, the role of rehabilitation, the patient journey, and the role of the American Academy of Physical Medicine and Rehabilitation. The American Academy of Physical Medicine and Rehabilitation really represents physiatrists. I am a physiatrist, and we're going to be speaking today with three other physiatrists who are all deeply involved with the care of patients, the rehabilitation of people from long-haul COVID disease. In fact, Dr. Benjamin Abramov, Dr. Monica Verdujo-Gutierrez, and Dr. Talia Fleming, colleagues and friends of mine, people who that we are working together through a collaborative of professionals, not just rehabilitation doctors, but others as well, to really understand what is happening to people with COVID long-haul disease or PASC, and to make sure that the guidelines of management are appropriate and uniform throughout the United States. So Ben Abramov will be joining me in a few moments, Monica and Talia a little later in the show, and we're also going to be talking with Shamir Smith, and Shamir will be joining me when she does, we'll have a more formal introduction, and I'll go through her details, but she is someone who has had COVID and is experiencing long-hauler symptoms, and her life has changed through this, and Shamir will be joining us to tell us her story. She's also a board member of BodyPolitik. She'll be letting us know what BodyPolitik is about and what she has been doing to look at health inequalities and disparities in health care, issues that the African-American population are experiencing in terms of access and getting the right health care. So this is a very important hour. Before we go there, a couple of other things that I wanted to bring up. One was, oh, it's the Olympics. The Olympics are going on right now. After the Olympics, and it's always upset me that after the Olympics comes the Paralympics. I think the Paralympics should come first because the mark of a true athlete is someone who is fighting significant adversity, and those people with disabilities, the Paralympians, to me, are the greater heroes of sports and achievement than able-bodied individuals. Anyway, that's just my perspective on things. However, U.S. Paralympian Becca Myers is a three-time gold medal swimmer. She happens to be deaf and blind due to a condition called Usher syndrome, which is a genetic disorder and affects hearing and vision. She has had to drop out of the Tokyo Games because the U.S. Olympic and Paralympic Committee denied her request to bring her personal care assistant to Japan. Now, I know there are significant issues with the Olympics going on in terms of COVID and what's happening in Japan, and the Japanese, the organizing committee, have had to lay down certain rules and regulations to limit the spread of COVID-19. But to deny a Paralympian the right to bring their personal care assistant to Japan, I think, is a mark for me of discrimination in terms of failing to recognize the needs of disabled athletes in terms of their personal care assistants and the special and unique needs that they have over and above the needs of those able-bodied individuals who don't have disabilities that impact their care and their well-being. Now, the U.S. team is providing a personal care assistant, but not one who is Becca Myers' well-known personal care assistant. I think this just raises a concern. I understand the decision. I can't abide or live by the decision, and I feel that this is a topic and a very important thing that we must be discussing in the future. How Paralympians, whatever the circumstances, whatever the restrictions, how they are provided for and how are they given the right opportunity. And I think there'll be much more discussion about Becca Myers and how and why she had to drop out of the Tokyo Games, and the decision of the Olympic and Paralympic Committee to deny her request to bring her personal care assistant. Yes, there's always two sides to every story. I may have presented perhaps mostly one side, but I do think it brings up a significant issue. The second thing I wanted to point out, and this I think leads into our discussion about COVID, is that the Obesity Society is urging all people with obesity to get the COVID-19 vaccine. We know the Delta variant is here. The Delta variant spreads much more rapidly. We're seeing rises in infection rates and hospitalizations, and 95% plus of hospitalizations and deaths are now happening in unvaccinated individuals without a doubt. In fact, I think it's 99.5%. So 99.5% of hospitalizations and deaths in people are unvaccinated. People with obesity who get COVID-19 are much more likely to have severe disease, much more likely to be admitted to the intensive care unit and put on a ventilator and to die from the disease. We need to do a better job educating our communities and spreading the word that the vaccine is really a lifesaver, and so very important that we put that out there. So very important. Well, there's a lot that we need to discuss, and we're not going to be focusing so much on vaccines, although Shumair may have something to say in terms of what she's been discussing about vaccines with her group on body politic. But it is important that we talk about the patient journey and the role of AAPMNR in the management of Long Hauler syndrome or PASC, post-acute sequelae of COVID. It's my pleasure to welcome Shumair Smith. Good morning, Shumair. Hey, good morning. How are you? I'm doing fine, and I'm so thrilled and honored that you're with us this morning. I know we have spoken amongst a much larger group when we have our monthly and sometimes weekly or biweekly meetings with the AAPMNR, but I want to thank you for getting up bright and early and being with us. And again, for our listeners, just to let you know just a little bit about Shumair. Shumair became ill with COVID-19 back in 2020, and Shumair was an award-winning middle school teacher in Baltimore, Maryland, and is now living with chronic Long Hauler symptoms and has turned much of her attention to educating black patients in urban communities who have experienced Long Hauler. Shumair has testified before Congress about living with Long COVID and is a board member of BodyPolitik, and that's a really important group. BodyPolitik is a network of COVID-19 patients and chronic illness allies that aims to break down barriers to patient-driven care for historically marginalized communities. So Shumair, thank you so much for being with us this morning. And I also want to introduce Dr. Benjamin Abramoff. Good morning, Dr. Abramoff. Good morning, Jonathan. How are you? I'm good. I'm great. And Ben, thank you so much for being with us. Ben has really been at the forefront of this initiative with the AAPMNR, has also been involved with many different committees in terms of discussing about the role of rehabilitation and care in the recovery from PASC. Dr. Abramoff is the Director of the Spinal Cord Injury Program and Director of the Post-COVID Assessment and Recovery Clinic at Penn Medicine. You know, time is going to go by real quick, Shumair and Ben, and so I want to move right into this. Shumair, tell us how your life has changed from COVID-19. What have been the biggest impacts for you in terms of symptoms and what you could do and what you're having a struggle taking care of now? You know, thank you so much for having me once again. I mentioned about a week and a half ago to the NIH as we talked about the psychiatric and neurologic effects of COVID-19 or, for me, long COVID. I mentioned that the most traumatic effect of this virus has been that it's broken my brain. My brain does not work or function in the same way that it used to, so much so that I had to give up my job as a middle school teacher in Baltimore, as you mentioned. I can no longer teach students English because I no longer can concentrate the same. I have significant memory loss. I've developed occipital and trigeminal neuralgia, which, as you know, is very painful on the facial nerves and, you know, in the neck as well as the spine. I've developed some spinal cord injuries. I just, I cannot function at the same level. I have brain fog every single day of my life. I lost my vision for five months because the neuroinflammation caused a dense cataract to form in my left eye. And my life has just been significantly changed. And what I tell people, sadly now, as I wrestle with the fact, I will never be the same. And so for a teacher to go from teaching students to being at the height of my career, about to transition into principalship or writing curriculum for students in an urban environment, it is devastating for me to have to spend the better part of my days and nights in my bedroom where I've been for the last 16 months. So I will never be the same. I fear that my brain will never be the same. And it's been a tragedy, not just for me, but also for my family members who I wanted to take care of. It's affected my friendships, how I socialize with people. I've developed PTSD because of the virus, depression. And I faced suicidal thoughts for many, many months leading up until the time where I started to feel like I had changed trajectory in my recovery. Yeah, Shamir, this is, I mean, obviously very impactful. And I want to thank you for coming on the air and talking about this for a number of reasons. Number one, it's not easy to talk about one's own personal issues. You know, we tend to keep those to ourselves and not share them with other people. And you're expressing them to the nation right now. So I thank you for that. Number two, I know, and in discussions about preparing for this show, this is fatiguing for you. This may be what you do today. And after this, you may be, you know, so tired and so fatigued and have this post-exertional malaise that there's not much else you can do today. So this is a sacrifice. Yeah. But Shamir, you're not alone. There's many, many other people. And through your involvement with BodyPolitik, you're a board member, you are hearing and understanding, appreciating the patient's journey. This person who's suffering from long COVID, you're recognizing that this is something that is affecting hundreds of thousands, if not millions of people across the United States. Yes, absolutely. You know, I go back to what you said. It is a risk. And not only is it fatiguing for me to talk in the morning or to talk in the middle of the day or at night, it's a risk whenever you express your personal experience with any type of illness. As a Black woman, that is not something historically that we've been known to do in our community for many different reasons. But I took a risk to share my story because I wanted to educate as many people as I possibly could. I'm an educator by nature. So this is not foreign for me. It's just more fatiguing for me. And so being involved with BodyPolitik, which I've been a member of since April of last year, has been life-saving for me and I'm sure many other people. As a matter of fact, I know it has been. It was one of the, it was the first group, support group that I joined, where I actually had to admit to myself that my illness had taken its course beyond just a two-week period. You know, doctors were telling me to go home and rest and I'll be okay in two weeks. But when I got to April and I realized that it was going to go beyond two weeks, I needed a place to finally admit to myself and to other people who were like me that I was going through these horrendous symptoms, things that were scaring me, things that caused me to believe that my life would be over. And so there is where I found my voice. I've always been very, very boisterous and articulate anyway, but it's hard to admit that you feel like you're on the verge of death and that you're home by yourself. And so I was surrounded by people who were experiencing the same things and who encouraged me. And from that point in time, I've been an advocate. Yep. Yeah, no, that's just wonderful, Shamira. And I'm thinking as you're talking, you know, a single voice can get lost on the wind, but BodyPolitik has thousands of voices and there are other patient support groups out there as well. And these voices are voluminous. This is a loud voice and it's one that's helping us as in the medical community, and I'm going to bring Dr. Abramoff into this conversation right now as well, it's helping us hear your voices and recognize that this is new, but that's not an excuse for ignorance. This is new. This is a call to action for the physicians and the medical community, but also for the politicians and the governing bodies to be listening, not just listening, to be acting on this as well. And this is something that is happening. And Shamira, we've heard from you in terms of working with the CDC and the NIH, etc. Really, really important. These are large groups. But Ben, thank you so much for being with us this morning. Again, you're listening and I know you have heard from Shamira before as well. Ben, what is the role of the medical community? Let's talk about the role of the American Academy of Physical Medicine Rehabilitation. Talk to us, guide us, what have we done in terms of listening, in terms of action to help really understand what's going on with long COVID, but also not just to turn that, what we've heard, but really to turn it into action. Yeah, Shamir, first, I think your story and the story of so many others is so important, like Jonathan said, and so powerful in terms of pushing forward all levels of this from the disability aspect to the health aspect to the national response. I really appreciate your continued efforts on that front. In terms of the AAPNR and what we've been doing, really this came out of a need that numerous clinics, including my own, started up, we saw the problem, we heard the problem, we heard patients like Shamir, and we said, okay, we need to create something to help serve these patients. And what ended up happening was numerous clinics devoted to the care of patients with PASC developed around the country. But they kind of developed in isolation, in silos, and there was little coordination between the different clinics. So in conversations with AAPNR, the thought, the decision was that we need to come up with a way to come together. Because every time I had spoken to somebody who was involved with one of these clinics or the treatment of patients with PASC, I learned something from them, I think sometimes they learned something from me, and we were able to move forward that way. And so coming together, we felt that we could accelerate the progress of the treatment of patients with PASC. And so when we created this body, we kind of looked at, well, what are the most pressing needs? What do we need to do right now? And I think it's hard to just isolate one or two, but the one that came to the forefront is we need to educate clinicians, educate developing PASC clinics, educate each other on what guidance we can provide to the treatment for patients with PASC. How do we assess them? How do we get them to the right subspecialties? How do we, and hopefully manage them to make them begin to feel better? And so that was the number one priority, and we've recently submitted guidelines for the treatment of PASC-related fatigue, which Jonathan was one of the lead writers on. And we're hoping to get those out to the community as soon as possible, hopefully within the next few weeks to help patients and physicians who have fatigue following COVID get the treatment that they need. Yeah, this is really, really very, very important work, and we're gonna be talking more about this, as I said. For again, for our listeners, you're listening to Dr. Radio on Sirius XM channel 110. This is a rehabilitative medicine show. I'm Dr. Jonathan Whiteson, one of the professors of rehabilitation medicine at Rusk Rehabilitation. My guest this morning, Shamir Smith, who is a member of BodyPolitik, is someone who is living with, suffering from long COVID, was a teacher, has had to give up that role as teaching, but has taken on a role of really helping people understand, helping us, the medical professionals, but also government officials really listen and understand what long COVID is all about. And Benjamin Abramoff, who is one of the leads here at the AAPMNR in terms of defining the role of AAPMNR and physical medicine rehabilitation physiatry in terms of managing patients who have passed post-acute sequelae of COVID is really leading the charge in terms of writing guidelines to help manage things like fatigue and brain fog that Shamir had mentioned, is also the director of the Spinal Cord Injury Program and director of post-COVID assessment and recovery clinic at Penn Medicine. The lines are open for any of our listeners who are listening who have questions. You may be a clinician yourself and want some guidance. You may be somebody who has a long COVID and want to ask a question. Shamir is here, Ben is here. You may want to just share your story briefly with us. Please do. The lines are open, 1-877-NYU-DOCS. That's 1-877-698-3627. Please do call in. You can also email us, docs.xm.com. We'll be happy to read off your emails. Again, 1-877-698-3627. Ben, just another question for you, and that is why AAPMNR? Why rehabilitation? Why physiatrist? Why does the AAPMNR play such a central role in the recovery from long COVID? Yeah, I think it's a good question. I think since the formation of physiatry as a subspecialty, one of our driving principles is, A, treating patients who have complex disabilities. And this often follows infectious disease. The polio epidemic from years ago really was part of the birth of physiatry as a subspecialty. And our background is in treating patients often with complex illness. So you had mentioned that I treat, and my background is in treating patients with spinal cord injuries. And just like post-COVID, patients with spinal cord injury have kind of multiple organ systems affected, skin, bowel, bladder, cardiovascular system, pulmonary system, all of which need to be considered in the overall treatment of these patients, along with the effects of their disability on school, on work, on community integration. How do we get them to function? And I think there's a lot of parallels between what we do on our day-to-day basis and what we're seeing with patients with PASC. And yeah, I'll leave it there. Yeah, really, really important, as I said, and really physiatry has a central mindset and an essential mindset in the management of individuals with disabilities, with multi-system disorders. And COVID really has presented that with many, many different organ systems and many different kinds of symptoms that have developed. Just one final question for you, Ben, before I swing back to Shamir, and that is, as well as AAP MNR, who else has AAP MNR been collaborating with in terms of specialists and specialties to help develop these guidelines? So one other thing I would also mention that I neglected to do before, physiatry also as a specialty really focuses on the team environment and bringing in multiple disciplines and working with our physical therapists and occupational therapists. In terms of who else physiatry has been, the AAP MNR has been working with, we've collaborated with many national bodies, including NIH, CDC, helping to review the CDC guidelines that came out, helping to give responses to the NIH funding request. They're working with other subspecialties, pediatrics, pulmonology, to really make sure that we're working in concert and not duplicating efforts in terms of getting these guidelines out. In terms of our collaborative, we have pulmonologists, neurologists, physical therapists, speech-language pathologists, neuropsychiatrists, all different specialties working together to attack this problem as best we can. And I know that also, and I've been involved with some of these conversations, AAP MNR is also strongly advocating at the federal level to provide the resources necessary to most effectively manage individuals with tasks, making sure there's research and clinical funding, which I think often gets neglected, to manage these patients. Yeah, you mentioned the research as well that's really so important, and part of these collaboratives and really getting clinics in the same direction, on the same pathways, that we can collaborate and put the data together and really come up with some good research on that. Shamir, I want to bring you back into the conversation and that is sort of on the warning side of things. Now, I, as a clinician, see patients in my post-COVID clinic, and I have an opinion, and I have a perspective based on what I see. How, hmm, I'm going to say the word dangerous, but how would you guide clinicians out there to listen to the patient voice, to listen to groups like BodyPolitik, when coming up with strategies and interventions and management interventions? Because if I just went by what I saw and what I know, I could really miss the mark. And I speak from my experience by listening to you, Shamir, and other members of BodyPolitik who've been on our calls. What word would you like to put out there to clinicians who are listening? And also warning signs or warnings to other long-haul patients who are out there in terms of the limitations that the individual physician may have and how important it is to listen to the patient's voice. Thank you for that question. All of what I've done in the last year to 16 months has been because I wanted to send a warning call to people, to doctors, to other patients, to the black community, because I know that I was mishandled, I was dismissed, I was misdiagnosed. Perhaps in the first two weeks of my infection, had I been listened to, as you said, that you try to do with your patients, I maybe would be in a very different situation now. Maybe I wouldn't have had to lose absolutely everything. My life has been completely devastated. I know the first six months of my illness, I fought, I cried, I argued, I challenged doctors who refused to listen to me about my symptoms. I remember I was hospitalized because I had a very severe case at that time, a flare-up of occipital neuralgia. And I told the doctor, I said, look, I believe that COVID causes occipital neuralgia or other neuroinflammatory conditions. He looked at me, he said, well, no, that can't be, because he looked at my test, my tests were negative. But he said to me after that, he said, absolutely not. He said, because COVID doesn't cause that. And that was in July of 2020. Now we know a year later that that's absolutely false. I know that there've been some reports about some of us patients testing, getting false negative tests. And so I think that doctors have to start there. A lot of us became sick as body politics calls it, the first waivers. And some of us, and also the group patient-led research has also done extensive research about how some patients don't test positive for the virus. And they don't test positive always for antibodies. However, because of the timing and the symptoms and the clinical diagnosis, it is without a doubt that we've had COVID and we are experiencing long COVID. And so we have to start there. It was extremely difficult for me to get doctors to listen to me. I experienced, as I speak in every, everywhere I go, I was racially profiled. I experienced sexism while I was trying to get treatment. So it helps for doctors to really have a compassionate ear when they're listening to their patients. Listen to all of the symptoms. As Ben just mentioned, there has to be multidisciplinary care. From the very first moment that a patient comes to the hospital or to the doctor, I experienced over 50 to 60 symptoms of COVID in the first two months. And I couldn't get a doctor, I couldn't pay a doctor to listen to me. And so listening and being clear and also understanding that clinical diagnosis is just as important sometimes as a test diagnosis. And that's very important as well. Yeah, Shamir, I completely agree with you. I wanna go back to something that you said and that is in terms of test negative. And I'm sure Ben has seen the same and I've seen it often too, where the nasal swab was either not done or was negative and the antibody test was either not done or negative. And yet the symptoms are there and we must treat this like it was COVID. It was COVID because the time is right, the symptoms are right, even though the testing is negative. And as you said, in a more broad sense, treat the patient, not the test result. That's what's so, so key. So sadly, Shamir and Ben for this segment, we're out of time. We are gonna carry on the conversation as we welcome after the break, Dr. Monica Verdugo Gutierrez and Dr. Talia Fleming. But Shamir, I wanna thank you, not just you, but you who you represent all the patients out there, all the people suffering from PASC, all the people who have a voice, but your voice, as you said, is a loud voice. And we love that. And I wanna give you air and I wanna give your voice power and energy. And trust me, it vibrates through Ben, it vibrates through me, Monica, Talia, all of the clinicians who you speak to on the calls when we're together. I wanna congratulate you for the work you do. I know you'd rather be healthy and not have to do this. I appreciate that. But body politic is so important. The patient voice is very important. So Shamir, thank you from my heart, from Ben's heart for being with us this morning. I look forward to talking with you again on Dr. Radio because we wanna keep this voice going because it's not gonna go away PASC or post a long COVID. It's gonna be here for some time, maybe forever. So Shamir Smith, thank you. Keep up the wonderful work. I hope that we've not fatigued you too much this morning and we'll be talking again soon. Shamir, yeah, you're welcome. And Ben, Dr. Abramoff, thank you for your leadership, for your role with AAPMNR, the work that you do with your patients and for guiding this process without you and a few others up there. This would not be as cohesive and as impactful as it is. So Ben, take a bow. We congratulate you and thank you for the great work that you've been doing and will continue to do. We need you. Thanks, Jonathan. All right, listen, you both have a great day. Thank you so much. We're heading to the break. When we come back, Dr. Monica Verdugo Gutierrez, Dr. Talia Fleming will be joining us to talk about COVID rehab strategies. Stay tuned. You're listening to Dr. Radio on Sirius XM, Channel 110. ♪ Here is where the story ends ♪ ♪ This is goodbye ♪ ♪ Knowing me, knowing you ♪ ♪ There is nothing we can do ♪ ♪ Knowing me, knowing you ♪ ♪ We just have to face it this time we lose ♪ ♪ Breaking up is never easy ♪ ♪ I know what I had to go through ♪ Never miss a beat of Dr. Radio with the new Sirius XM app. Streaming now included with most Sirius XM subscriptions. Go to SiriusXM.com slash more.

COVID-19

long-haul symptoms

rehabilitation

post-acute sequelae

patient-driven care

collaborative efforts

research