Psychological Intervention for Patients with Long COVID

[00:00:00] Elisabeth Nickels, Ph.D.: A lot of folks also don't have access to their established coping, right? [00:00:03] I used to be really physically active. Can't do that anymore. Or I used to rely on being around other people. Can't do that anymore. [00:00:11] [00:00:13] Introduction --- [00:00:13] Meghan Beier, PhD: Welcome to the find empathy behavioral medicine series. For this webinar, I'm excited to introduce Dr. Elisabeth Nickels. She's a counseling psychologist with expertise in health and rehabilitation psychology. She specializes in adjustment to acute and chronic illness, injury, and disability. Chronic pain management and health psychology interventions. She obtained a master's degree in arts and education. In psychological counseling at teachers college, Columbia university in New York city. She completed a pre-doctoral internship in psychology at Mount Sinai medical center, department of rehabilitation and human performance. [00:00:54] Also in New York city. And she obtained her doctoral degree in counseling psychology from ball state university in Indiana. She continued her training as a postdoctoral fellow in health psychology. And psycho-oncology at Sutter health, California Pacific medical center in San Francisco. Her research and interests include the role of social and emotional factors in adjustment, health behaviors, and quality of life in the prevention and management of acute and chronic health conditions. [00:01:26] Dr. Nickels is also the primary psychologist in the long COVID clinic at Johns Hopkins university school of medicine. With a background in the arts. Dr. Nickels also has experience in teaching and performing music and theater. We're so excited to have her in this webinar today. She'll be presenting on long COVID. [00:01:44] Presentation --- [00:01:44] Elisabeth Nickels, Ph.D.: so much and thank you for having me and thanks everybody for joining. [00:01:49] I'm really excited to talk about this topic. It's near and dear to my heart. Um, and so I really appreciate you joining and I look forward to hearing from any perspectives or experiences that you have at the end when you do questions. Um, so I am going to share my screen with you to get started. Is that working out? [00:02:14] Can everybody see that? Um, so, yeah, I don't have any conflicts or disclosures. I work for Johns Hopkins. All of my clinical work and research has been in that context in that setting. Um, and I'm going to talk about. Long COVID in general, but specifically with a focus on psychological intervention. Um, I've been at the Long COVID Clinic for just under two years, um, at Hopkins, seeing patients on an outpatient basis and working with the interdisciplinary team there that sees Long COVID patients. [00:02:51] And it's been a really It's an amazing experience to get to, to care for these patients who oftentimes don't feel acknowledged, understood, um, and cared for, you know, in a way that, that acknowledges what they're going through. Um, I want to make a disclaimer that this is by no means exhaustive. I'm going to give an overview of my understanding of the current literature and my clinical experiences. [00:03:18] Um, but definitely. Recognize there could be other perspectives and other things that I am not aware of and so definitely look forward to, you know, hearing from anybody else that has experience in this space. [00:03:33] So to get started objectives here. I want to just talk about long COVID a little bit, like what it is, how it impacts mental health, prevalence rates, things like that, since we do have some more data on that now than a little bit earlier, um, in the pandemic. How do I identify patients who might benefit from psychological intervention? [00:03:56] Certainly not everyone with long COVID needs or would benefit from psychological intervention, but it can be helpful to kind of find those who might because it can be people that have never had a need for psychological intervention before or mental health support. I'm going to discuss what treatment options there are, what's going on in the literature, which is not a tremendous amount, but I'm using chronic illness as a backdrop as well because we're pulling a lot from that, um, in guiding our efforts. [00:04:27] How patients benefit, um, I'm going to discuss some case examples of patients that I've worked with to illustrate what I've been doing, what I've found to be helpful with patients. Um, I know one of the things I'm always hungry for in these talks is, okay, we know the problem, we know the step, but what do we do about it? [00:04:45] What do we do with patients? What do we find is helpful for patients? And what do we still not know? Um, this is a condition where from the get go, we've all been learning from patients. It's been a very patient led movement of saying, Hey, you know, we're not over cove it. We're not okay. So I like to take a very patient focused approach and how I. [00:05:08] You know, identify treatment and what's beneficial for patients, because we're learning from patients as much as they're learning from us. [00:05:16] So just defining what is long COVID, I like to look to the experts. So this is just, you know, how the CDC defines it. It is a physiological condition. It can affect multiple body symptoms. As we'll see, we'll talk about what, what all of that looks like. [00:05:31] I'll clearly be focusing on mental health outcomes, but there's a lot of a lot of ways that this can impact people physiologically and mentally. It's basically a range of new symptoms that can arise after acute COVID or ongoing symptoms that don't. ever really resolved from acute COVID. So it can be new symptoms, or it can just be a continuation of acute COVID symptoms can last weeks after initial infection months, even years, we're seeing now, um, it can present after a mild infection or a severe infection. [00:06:06] A lot of my patients that I see actually had mild acute COVID infections, weren't hospitalized, anything like that, and then they can have pretty significant long COVID symptoms. So it's not exactly what you might expect in terms of the correlation between the severity of the acute COVID and the severity of the long COVID. [00:06:26] There's a little bit of discrepancy in the literature about what constitutes long COVID in terms of time frame. There are some studies that go by four weeks post acute infection if you're still having symptoms, then there are others that go by 12 weeks. So anywhere from, you know, one to three months if you're still having persistent symptoms, it's, it's thought of as long COVID. [00:06:49] The symptoms can worsen and often do worsen with physical exertion or activity, mental exertion or activity, and we'll talk more about how that plays out for people. Um, P A S C, post acute sequelae of COVID is another term that's kind of used for the long term impacts of acute COVID. It can impact multiple systems, multiple organs, including heart, lungs, kidneys, skin. [00:07:16] brain, GI system. You know, it really can affect a lot of different symptoms. Um, so that symptoms can be, like I said, more severe and debilitating even than the acute COVID. They're not always, but they can be. It is considered a disability. You can be designated as long COVID being a disability if it substantially limits one or more major life activities. [00:07:44] Some common symptoms, and I've highlighted ones here, that the ones in yellow are the ones I've been seeing the most of, I would say. I've seen all of these in my patients that I work with, but the, um, the yellow ones are kind of the most common. So tiredness. fatigue, like debilitating sometimes, not just I'm a little tired, but, you know, people who can't get out of bed, you know, pretty severe. [00:08:08] Um, it, it, it's crossed the gamut. Post exertional malaise, PEM, so kind of when you do something or when you exert any energy, you really crash from it mentally and or physically. That's probably the biggest. um, symptom that we see. Um, then the brain fog is, is the next big one that we see, just difficulty with thinking, concentrating, memory problems, attention difficulties, um, things like that is pretty common. [00:08:36] And again, it can be arranged in severity. Uh, joint pain or muscle pain or neuropathic pain, either new or worsened, um, from preexisting pain. We see headache. Persistent headache and migraines can be really common after COVID depression and or anxiety, either new or a reoccurrence or worsening of a previous diagnosis. [00:09:04] Sleep problems are very common post COVID, which can of course impact all of those other things. People can also have cardiac issues, heart palpitations, persistent cough, persistent fever. The loss of taste or smell that people had at the acute phase can be persistent. Shortness of breath, difficulty breathing, obviously it is common for folks especially who had the more acute, severe acute infections. [00:09:34] And then dysautonomia, so sort of that dysregulation of the autonomic nervous system, which manifests in Um, like heart rate variability, blood pressure variability, sort of difficulty regulating those systems that are just supposed to be automatic, so people can have like temperature dysregulation, dizziness, um, that type of thing, racing heart. [00:09:54] So these are kind of the most common symptoms that, that we see. Some statistics for you. Um, the most recent, um, systematic review that I could find looked at folks who had acute COVID. And then had symptoms up to one year post COVID and this was the percentages that were recorded. So you can see it's, you know, a fair chunk of folks who had acute COVID are having these, these post COVID or long COVID symptoms, fatigue being the biggest one, almost 30%, the psychiatric symptoms. [00:10:29] Um, the cognitive deficits, both of those are around one fifth of people, and then sleep disturbance was pretty high too, so I included that on there, just to show you what's happening in, in the research. Um, some more just demographics, I want to say too that I work with adults, I don't work with, um, children, but I did include a little bit of info about, because I thought, what's the prevalence in children? [00:10:53] So I did, did include some of that, but today's, um, presentation is mainly working with adults, so some, um, Prevalence overall in U. S. adults of anyone who has long COVID, regardless of, you know, initial COVID status, um, is around 6%. Um, this is, of course, what we know of, right? It's probably a lot more than that. [00:11:14] This is just what we've been able to recognize and diagnose. Most of us, you know, working in this space assume that there's a lot more folks out there experiencing long COVID symptoms than we know about, but this is kind of what we know of. It did decrease slightly from, from the year before. That's kind of where we're at in terms of the overall population. [00:11:35] Now, of the people who had COVID, I always think it's interesting to look at the percentage of those folks who are reporting long COVID. And the most recent numbers I found were around 28%. So it's a pretty good percentage. And when you think about, you know, how many people had acute COVID to have almost a third of them with long COVID, it's, it's a lot of people. [00:11:58] So it's a significant problem. Um, just a little more, you know, statistics here about who is getting it, who's reporting it, more common in women than men, um, most prevalent in those age groups, you can see there, 35 to 49, and then 50 to 64, I put the racial breakdown, kind of, kind of rural versus metropolitan, um, incomes, there wasn't a huge discrepancy until you get to that 400, Um, 400 percent of the federal poverty level line, then it was slightly less prevalent, but all other income levels were kind of, um, kind of similar. [00:12:37] And then I threw in, like I said, just for folks who are interested in pediatric demographics here. So the overall prevalence in children 2%, but The latest data I found was from 2022, so I don't know if that's still actually accurate, but that's what I could find. And then of children who had COVID, the percentage reporting along COVID is about 23 percent, so slightly less than in adults, but. [00:13:05] But still, you know, fairly high. It is, like in adults, it is more commonly reported in girls than in boys. It is most prevalent at ages 12 to 17, so kind of adolescent. Um, and then I have the breakdown there. It is most prevalent in Hispanic patients, followed by white patients, black patients, and then Asians. [00:13:25] Um, for both pediatrics and adults, Asian populations were the least affected by long COVID, or at least reporting. Just anecdotally from my clinical work and talking with other providers, these are some sort of unique things maybe to long COVID that I think it's important to understand as a provider. [00:13:47] Symptoms can begin immediately following acute COVID or you can actually have a period where you feel better after acute COVID and then symptoms emerge and it's really different across the board. So it doesn't always immediately follow COVID, which can make it hard to identify for some folks, you know, hard to connect it to, oh, this is from COVID. [00:14:09] So it can. Kind of pop up later Symptoms can change and vary as you go along. Some symptoms can get better. New symptoms can kind of emerge. Um, and it's, you know, I want to say it is hard to tie specific things always back to COVID, but what we do is we look at a picture, an overall picture of, you know, when someone had COVID, how many times have they had COVID. [00:14:34] When did these symptoms appear? Is this something they've ever experienced before? Is this consistent with other folks, you know, with long COVID? You know, so we're making, we're making educated guesses on what, you know, what to attribute to long COVID. But of course, we can never be 100 percent sure. But this is something that can make it kind of difficult because symptoms can really, uh, Kind of come and go, re emerge, um, get better, get worse, things like that. [00:15:01] Um, symptoms can also really ebb and flow. So, like, even within a span of one week, patients will say, I had three good days and then two horrible days. Or, you know, it's really, you kind of don't know how you're going to feel from day to day. Um, a lot of patients report crashes is a term that a lot of patients use where even if they exerted themselves even to a A small amount. [00:15:26] They can really have like a strong fatigue crash physically, mentally, maybe even emotionally. Um, so that's something that really comes out a lot is trying to avoid crashes is something we work on. Another thing that seems. to really resonate for patients is that mental energy, emotional energy and physical energy are often equally draining. [00:15:52] So some people, you know, before COVID kind of describe it as, well, I felt like I could be really tired physically, but I was sort of cognitively and mentally still had energy. But now, One impacts the other, you know, if they expend any mental energy, they can feel like they ran a marathon or if they expend any emotional energy, they can feel physically drained and vice versa. [00:16:14] So it really feels like all the energy is coming from one bucket and it's a smaller bucket. Um, recovery does happen. There is hope. We do see people with recovery happening, but it tends to be gradual. It tends to be slow. Um, and it really can be uneven. You know, there can be plateaus. There can be relapses and setbacks. [00:16:38] So I always when I'm talking to patients about this, because that's a question they have is. Do people get better? Um, and the answer is overall, yes, we do see people getting better. Um, I personally think it's a combination of treating symptoms, you know, medically and behaviorally, but also sort of the mental and emotional piece of how you cope with the symptoms and finding that acceptance and connecting to meaning and, you know, learning to live with limitations. [00:17:07] I see the people that do, um, get better and progress as a combination of those factors. In terms of identifying patients who could benefit from psychological treatment, specifically, who have long COVID, we want to be careful not to over pathologize, right? Because with all these symptoms going on, of course people are going to feel distressed. [00:17:31] Of course they're going to feel anxious and depressed and, you know, a lot of things. Because their bodies, it feels different being in their bodies. So We really, we don't want to suggest anyone with any level of distress, um, around these symptoms needs psychological treatment, but if it really is impacting somebody's, um, day to day and, and they really, you know, feel like they could benefit from treatment, then, you know, we absolutely want to offer that to them, but I just want to be careful not to over apologize because I think anyone would be distressed until some level who is having these types of symptoms, um, so things to look for. [00:18:06] Take care. That can sort of be, uh, risk factors for developing psychological issues after COVID is any history, you know, prior, um, mental health, depression, anxiety, trauma, PTSD, panic attacks, folks with a history of that, um, are more at risk for having long COVID in general and, um, mental health issues. [00:18:29] struggles after a long COVID. Um, if you do have a history that they can worsen or re emerge after acute COVID, some people say, well, I had depression a long time ago, but I've been fine. And now it feels like it's back. So it can kind of get triggered, um, or it can get worse if it was already there. Um, it was interesting, they did a study that showed that a history of psychological distress actually contributes to an increased risk in developing long COVID, not just the psychological impact, you know, factors of long COVID, but long COVID in general. [00:19:03] Um, so it really is something to look at in people's history. Um, and just, you know, psychological distress has a, has a. You know, large portion in daily life quality of life, you know, so it's something that doesn't deserve attention in addition to all of the physical and the metal medical aspects of long COVID. [00:19:25] So just things to look for, you know, if you're working with other providers and people are wondering, you know, could this person use some support if they have new symptoms of depression, anxiety, panic or PTSD. I do have a number of patients who say I've never dealt with anything. Mental health related. [00:19:44] I've never had anxiety. I've never had depression and now like I don't understand what's going on So that might be totally new for them or there are people who recognize I have felt this way and it feels worse now It's worse. I'm having more trouble managing it. A lot of folks are just having understandably Difficulty with coping and adjusting to the changes and the limitations that it might bring on I mean some people have had to quit their jobs I can't work anymore. [00:20:13] You know, they can't do the leisure activities that they valued so much. It's really impacted people's lives. We're just seeing how people are coping with that. You know, it's hard. It's hard. Also, just limited social support and a sense of isolation for as many people as we know. Have long covid. A lot of people who have it feel like they're the only one they know who has it. [00:20:39] So it's kind of one of those. And you know, the pandemic has also been isolating, so people aren't interacting as much. And if you had covid and long covid, you're a little more wary of interacting with people. So a lot of the patients can feel very isolated. So those are kind of like risk factors and we'll talk about more risk factors. [00:20:59] Also, some things that are specific to COVID that can lead to psychiatric distress are, um, Respiratory, you know, any difficulty with breathing can really, you know, lead to anxiety. So we see that a lot. And then cognitive complaints. So the brain fog, not being able to sort of use your brain the way you're used to, can really lead to a lot of anxiety and depression. [00:21:22] So those are some things kind of specific to COVID that we see leading to distress. Also, of course, if somebody was one of those more severe cases where they were hospitalized, maybe they're on event, they're in ICU, you know, that's a that can be a very traumatic experience. So you want to sort of see how that's affecting them now. [00:21:43] Um, you know, screening for. For PTSD symptoms, post ICU trauma symptoms, PICS, kind of, you know, explaining what that is, because a lot of times folks don't necessarily understand what's going on, why they're having certain symptoms after coming out of the ICU, because everyone's just so glad they're alive and they survived, and then it's like, oh, I have all this stuff going on, what does this mean? [00:22:06] So helping patients understand. Um, and some of the things that come up for those patients, um, are like awareness of all of the death that was going on around them, the suffering of others. There can be survivor guilt. Um, it's just traumatic to be in an ICU during a crisis like that and knowing how many people are suffering and dying. [00:22:26] Um, there's also often a lot of confusion about what happened to them in the ICU because you're not always conscious. You might be sedated. You can have, you know, delusions and hallucinations associated with that and not know what's real and what's not. So a lot of folks have a lot of questions or periods of their life that are just kind of missing. [00:22:45] And that can be, that can be really distressing. Some risk factors that Really contribute to psychological distress after covid just wanted to highlight a lot of these here. This is I see this in a lot of my patients that I work with fear of reinfection, just feeling vulnerable, you know, not wanting to be in public or be around other people. [00:23:07] So it's isolating, right? There's a lack of social connection. There's a lot of loss and grief, right? It could be loss of actual loved ones. It could be loss of identities or things that you're able to do. Loss of stability, job, income, insurance, a lot of people applying for disability, there's a lot of stressors there, how it's impacted the family, um, difficulty accepting limitations, right, whether those are physical, cognitive, or emotional, it can feel like you're living in a new body, and that can be really hard to adjust to. [00:23:44] Uncertainty about the future, right? There's a lot we don't know about long COVID and what's, you know, what treatments are available and how long will this last and will I get better? You know, will I get worse? Lots of uncertainty involved. A lot of folks also don't have access to their established coping, right? [00:24:03] I used to be really physically active. Can't do that anymore. Or I used to rely on being around other people. Can't do that anymore. So it can be hard to find, um, adaptive coping strategies. There can be increased reliance on substances for folks if they're lacking in other coping strategies. Um, it also has different impacts on members of marginalized groups, right? [00:24:28] We know that people of color, people of lower SES, you know, they're I'm getting a lack of access to quality health care in general and how that impacted COVID and those populations. And so it's understandably also affecting long COVID in those populations. And are there cultural norms, you know, that prevent people from getting care or being able to recognize that it's an illness? [00:24:55] You know, there's some people that say, you know, my culture or my family don't understand or don't believe in COVID or don't believe in long COVID or my doctors don't understand it or know about it. So there can be a real, again, just that sense of isolation, that sense of not being believed, um, depending on somebody's environment. [00:25:17] These are just some common screening measures I wanted to include. Um, these are ones that I use. Um, I don't do a ton of, of testing, um, with folks, but I do give some brief measures, obviously, to get some, some data on things like depression, anxiety. Substance use, if they have been in the ICU, is there any, you know, residual trauma symptoms from that? [00:25:44] Um, so I too have my patients, when I'm evaluating them, just do a couple of these. But, I wanna, I wanna make a note of caution. So, a lot of these measures, like, you know, the PHQ 9 and the GAD, they often include questions about symptoms that overlap with long COVID, right? So, fatigue. Trouble with sleep, appetite disturbance, difficulty concentrating, psychomotor retardation, which those, they might be associating those things with a mental health condition, but those are also actual sequelae of long COVID. [00:26:20] So you want to be careful with, again, over pathologizing based on only those answers. So you have to be careful with some of these. Um, so they certainly can be indicative of mood disturbance, but we want to just be aware that there is a lot of symptom overlap with long COVID symptoms and these measures. [00:26:38] So what I do is I, I pay special attention to the questions about loss of interest and pleasure, feeling down, feeling bad, feelings of hopelessness, you know, thoughts of self harm, suicidal ideation, excessive worry. Irritability and the patient's just qualitative report of their mood and emotional functioning. [00:26:59] So you just want to be really careful when you're using those measures because a lot of people say, well, yeah, I'm tired all the time. Or a lot of folks say, I have interest in doing things. I just can't do that. You know, so you want to clarify when you're doing those. those questionnaires. Treatment options. [00:27:17] So these are the things that I've seen available. Individual therapy, um, which, you know, there are places that are focusing on long COVID. You know, Johns Hopkins is one of them. I think it's growing, you know, the amount of sort of long COVID clinics and providers, but it's not easy to find as a specialty. [00:27:36] Um, and that therapy can be brief. Intermittent, which is how I work, or long term. I think a lot of folks could benefit from more long term support around it, but it's been hard because, you know, providers, there's never enough of us. Um, group therapy and psychoeducation is also another great tool. Um, These are kind of always evolving. [00:27:58] Um, we had one group at Johns Hopkins. I know at University of Washington they have a COVID specific group. I heard that Rusk had a long COVID group going on. So those can be really helpful, um, but they can be hard to find too. Because we all know groups can be hard to kind of facilitate and get going. Um, support groups. [00:28:18] So just not necessarily moderated or structured, but just people coming together who have long COVID. There's a ton of stuff online. Um, I always sort of caution patients with this that you want to be aware of how You know, participating in that group is making you feel right, because it can kind of groups can take on a tone or, you know, sort of a culture. [00:28:41] And, you know, you want to be mindful of how that's impacting you. Is it helpful or is it? Is it scaring you bringing you down or things like that? So. Um, but a lot of people are seeking support from others who can understand what they're going through. Peer support is another thing that we occasionally do, like in the clinic, where if there's someone who had a really specific, difficult hospitalization, they don't know anybody else who went through that. [00:29:07] You know, we'll see, you know, if we have another patient that we think they might relate to, we'll talk to them and say, you know, would you be willing to talk to this person? They're really feeling alone and we have connected patients that way, just one on one to just feel less alone and what they went through. [00:29:22] So I'd like to do more of that. Um, I think that's really helpful. Just in terms of potential benefits for patients to have that psychological support, these are some things that I see really emerging in my work with patients that seem to be beneficial. If I wanted to share these, um, just first and foremost, validation of patient's symptoms and experiences, right? [00:29:47] Especially from, from medical providers, right? A lot of folks, by the time they come to us, they're like, Oh, I've been to so many doctors who just. You know, didn't know what's wrong or invalidated me or just told me it was all in my head, you know, because. You know, we're all learning about long COVID, so a lot of people have felt very invalidated by the time they come to us, so just validating that their symptoms and their experiences are real and that long COVID is real can be a very powerful way to just start treatment. [00:30:15] Also, just normalizing. Other people have these symptoms. This is something I talk about so much with patients who come to me is, you are not alone in this. And for what that's worth, it's actually often very comforting to folks because a lot of people feel like, Oh, I'm the only one having this crazy symptom. [00:30:33] So that normalization of, I have a lot of patients who are reporting this to me can actually be really comforting just to know, Oh, okay. You know, this is a thing. It's not just me. Um, I provide a lot of support and help people just acknowledge and process feelings of grief, loss, anger, frustration, and fear, you know, the hard feelings that people don't feel like they can share with others, especially young people. [00:30:59] The sort of the lack of understanding around long COVID, the invisibility of long COVID, right? It's often invisible and you look fine, right? So people feel very alone in what they're going through. So I really want to provide a space for them to just acknowledge and process those feelings. And then, of course, we want to also work on coping skills, right, to lessen the impact of mood disturbance, relaxation skills, the mind body connection, um, all of that, helping patients sort of understand what's going on in their bodies and how they can help, you know, calm their nervous system when it's feeling keyed up, which is common in a lot of long COVID patients. [00:31:42] Helping patients understand that mind body connection, right? How thoughts, feelings, behaviors can impact, you know, how you feel physically and vice versa. And just trying to increase the sense of control and autonomy. A lot of times, folks with long COVID are just feeling very out of control of their bodies, and maybe even their minds as well, maybe even their feelings. [00:32:05] Um, so just helping patients understand how all those systems work together and help them see, oh, this actually helps bring down this system's activation and that kind of helps this other system's activation. Another thing I talk about a lot is helping patients communicate with loved ones about their experience and their needs, right? [00:32:26] Because it is chronic, it is unpredictable. A lot of times people just kind of stop talking about it because they're frustrated or their loved ones don't understand it or they don't know how to ask for support or they get tired of asking for support. So really, you know, exploring what are those conversations look like with your loved ones? [00:32:44] What would you like them to know or understand that maybe isn't getting across having family members join in sessions, you know, to kind of learn and get some support, um, because that affects everybody, not just the patient, you know, it affects the loved ones and their family as well. So just how to communicate. [00:33:03] Family, loved ones, caregivers, things like that. Also just looking at, you know, healthy habits and self care behaviors. Sleep gets disturbed a lot by COVID and some of us don't have great sleep hygiene to begin with. So that's something that, you know, we can kind of work on. Let's focus on improving sleep. [00:33:22] You know, are you eating regularly? A lot of folks. don't have much of an appetite, but they also have really low energy. So it's like, okay, how might that be working together? And can we, you know, can we get you eating more regularly and see how that affects your energy? Activity pacing is a huge one. Um, you know, just are you trying to do too much? [00:33:41] Are you taking breaks? Are you, you know, sort of noticing your energy level and your fatigue level and how to still engage in activities that are important to you, meaningful to you? Um, but within the limitations that you might have right now, so kind of the overall. Um, hope is to just help patients reimagine their lives in accordance with their values and their strengths, right? [00:34:07] To maintain a sense of purpose, even within the current limitations, which can be hard to picture when you're the one living it, right? So kind of helping patients see the strengths that they still have, um, helping them recognize how they can maybe use those in new ways. You know, also, what do you care about most in life? [00:34:25] Um, long COVID can lead to a perspective shift for some patients where, you know, I focused on work, work, work, work, work, maybe now, you know, I'm going to focus more on family, maybe, you know, my, maybe my values are shifting because of these limitations and kind of seeing maybe it's not all bad, right? Maybe there could be some positive changes here. [00:34:46] In terms of treatments, I wanted to talk about both, you know, what we've been using, what we've seen work, but also what's out there in the literature. This is just some, some info about chronic illness treatment in general, or what types of approaches to psychological treatment with chronic illness have been helpful, that are specific to, you know, someone who's dealing with chronic illness and not just, you know, a pure mental health issue. [00:35:13] So I liked these, these quotes from this. From this article about self regulation, overcoming distress, exploring opportunities for building healthy parts of the self, right? Recognizing healthy parts of the self. Pursuing autonomy, you know, trying to sort of gain a sense of control when you're feeling completely out of control because of this illness. [00:35:37] Seeking a balance, right, between acceptance of the condition while still trying to move forward, right, and engage and live your life. Right. A lot of folks can get really focused on, I got to get better. I got to cure this. What can I do? And they can kind of become long COVID, right? They become a long COVID patient and kind of forget that they're a person with long COVID. [00:36:00] So helping find that balance. Um, I really like a lot of body work. I did imagery, relaxation, breathing. grounding, sensory grounding techniques, right, to enhance that sense of self regulation, um, connect with feelings of autonomy, strength, um, when it feels like your body's kind of going crazy. So I find, I find those things to be helpful. [00:36:22] In terms of the evidence base, so it's Gradually building for, you know, treatment specific to long COVID. A lot of the existing research, um, does focus on COVID itself. You know, acute COVID, the pandemic stress, things like that, rather than long COVID specifically. However, that is changing, but it is growing. [00:36:44] Um, we are seeing more and more studies on specifically long COVID. Um, it does tend to focus on the individual symptoms associated with it, like fatigue, poor sleep, the brain fog, um, and kind of seeing what we can learn from other conditions about those, you know, ME, CFS, there's a lot of crossover there in terms of what long COVID folks are experiencing. [00:37:07] Fibromyalgia, dysautonomia, right? So kind of really drawing from these conditions that are, are really similar to some of what's showing up in long COVID. We've really been pulling from that and kind of treating symptoms because we don't have a cure for a long COVID, unfortunately. Um, so we really try to meet patients where they're at, what are you struggling with, and then is there, is there evidence we can pull from, from these other, you know, illnesses and certainly that's been helpful. [00:37:35] In terms of psychological approaches, CBT, you know, is, is always out there, um, and that is showing up as, you know, an effective treatment both in the chronic illness space more broadly, but also now with long COVID. Um, there's actually the AAPMNR guidelines. um, acknowledge that CBT Act, which is Acceptance and Commitment Therapy, which is focused on, you know, living in accordance with your values, um, you know, finding what you can accept versus what you can change and focusing on that kind of defusing from assumptions and thoughts that you might have. [00:38:13] Um, so that's been, you know, showing some promise in the literature and then mindfulness based interventions. Also, again, that helping Patients learn that mind body connection and how their systems are all working together and maybe even changing your relationship to your body and your sensations. Um, a lot of, of work we do is around getting comfortable with uncomfortable sensations, right, and learning what's a life threatening signal that I need to worry about versus, oh, this is the symptom. [00:38:44] that's uncomfortable and kind of changing your relationship to what your body is doing. Again, just evidence from the chronic illness literature more broadly because we're really pulling from that in terms of long COVID. I just wanted to include some, um, some evidence here, some systematic reviews and meta analyses about CBT and how that, you know, that has been found to be effective with folks dealing with chronic illness who also are having depression and anxiety. [00:39:14] Not grand effects, right, but at least some different small effects, um, act like I talked about acceptance and commitment therapy for chronic pain, especially that's been looked at, has, has been shown to be helpful. Um, and I think that translates, um, well for folks with chronic illness more broadly and also a lot of folks upon COVID have chronic pain now, so, um, that's a helpful one and then mindfulness, um, for coping with chronic illnesses more broadly. [00:39:43] There's, there's a lot of, um. Research out there on the effects of mindfulness. And again, we don't always know exactly why it works, um, but it has shown positive effects on pain acceptance, coping in general, depressive symptoms, anxious symptoms. So that's just some evidence for, for those, um, studies more specific to long COVID, like I said, are a little bit few and far between, um. [00:40:08] But I just wanted to include a couple of here. There's more. The literature is growing, but these are some that I had pulled that had actually looked at, you know, these interventions for long COVID and found, you know, some positive effects. Also, I just wanted to include here some ongoing larger long COVID studies and trials. [00:40:29] Um, a lot of patients are worried that there's not Research happening and there's not enough going on. And they're like, is this being looked at? Are they looking for answers? And they are, you know, there's some really large studies going on. This is just some of them and I wanted to include, you know, the links that you can check those out. [00:40:46] So there is a lot more research going on answers. Slowly trickling in, we're getting, you know, some idea of the pathophysiology of what's leading to some of these symptoms, like the chronic inflammation and things like that. Um, so I like to just know that these are going on and help patients, also direct patients to these. [00:41:07] Um, in our clinic specifically, the PACT clinic post acute COVID team is what we call it. I see patients for an initial intake appointment. They get referred to me from the other providers, from the doctors in the clinic who are seeing them. Um, I do an assessment, evaluation, um, and then typically, um, I'll do short term psychological intervention with them. [00:41:29] Um, I wish I could do longer term, but I'm the only psychologist in that clinic. So, I've got a sort of an Intermittent short term model where I see patients for typically four to six sessions, but it can be more, but I tend to space them out. So we're meeting every few weeks, or maybe even once a month. If I've seen someone for a while because of that long nature of long coded. [00:41:51] The unpredictable nature of long COVID, it seems to make more sense than like four weeks in a row, and then we're done. So I like to kind of spread it out a little bit more. And then also helping connect people to longer term care or more frequent care, if they feel like that would be helpful. We did have a coping skills group at one time. [00:42:10] Um, we haven't had it in a while just due to, you know, lack of resources and staff, but it's always something that I hope to get going again because people really liked that. And then again, the peer support that I talked about where we connect individual patients with others, um, who might understand what they're going through. [00:42:27] In terms of my typical interventions, I just included some of these here, um, psychotherapy, mindfulness, relaxation exercises, cognitive restructuring, you know, that good old CBT, challenging negative thoughts, looking at your self talk around having an illness, being disabled, what does this mean, um, self worth, things like that, increasing that mind body awareness. [00:42:53] grounding, sensory grounding for anxiety. Um, and then just help behavior stuff. You know, what can we do to improve your sleep? Are there things that you could be doing? You know, can we manage your energy differently? Can we manage your fatigue differently? What can we focus your energy on that's most important to you? [00:43:12] Pain management, pain, good old pain psych, um, comes up a lot as well because a lot of people have new or worsened chronic pain after long COVID. And just generally increasing their sense of being able to cope. I put a note in here that a lot of my patients concurrently benefit from being in other rehab therapies while they're working with me. [00:43:32] Physical therapy, occupational therapy, speech therapy, so for the cognitive strategies, you know, I'll work on cognitive, you know, compensatory strategies or strengthening strategies for patients that are dealing with the cognitive issues. A lot of patients also benefit from being in speech therapy for cognition to kind of go a little deeper into that. [00:43:52] But I like to really educate patients on. All the different things that can contribute to cognitive, um, problems and difficulties so that they can feel again a little bit more sense of control and autonomy over that. Um, some people get full neuropsych testing if they want to return to work, things like that. [00:44:12] Um, So just to do, I know we're getting down on time here, but I want to do one case example to kind of give an example of how I work with patients. So this was a 56 year old female. She was an EMT, married with adult children, had COVID in late 2021, not hospitalized, but did the acute, did last for a full two months. [00:44:33] So she was pretty sick without being hospitalized. Just some of her symptoms there. Lost her job as an EMT, which was really, really devastating. That was a huge part of her identity, but she couldn't do it. She was still on oxygen, very debilitated. Um, like for someone who wasn't hospitalized, she was like pretty debilitated. [00:44:54] Um, like I would, you would think, oh, she must have been in the hospital. So her level of debilitation was pretty significant. Um, I saw her for About six sessions, things she was dealing with was very frustrated with her cognitive fog, low self esteem, associated with her limitations, loss of identity. She went from being the helper to being the patient, very uncomfortable, um, and she expressed a desire to see herself in a different way going forward. [00:45:24] Um, so that's some of the things I did with her. Um, just supportive, again, starting out with. Processing your thoughts and emotions. How have you been impacted by COVID? What are the losses that you're associating with COVID? Normalizing, validating, grief and loss. Behavioral, you know, what can we do to kind of work with these limitations? [00:45:46] Let's explore, you know, she didn't have an appetite and she wasn't really eating. Sleep was really kind of all over the place, you know, so how can we increase a sense of normalcy, you know, with these habits to help you feel like, okay, I have a routine that I can follow that helps me feel better mindfulness is always a piece of it too, of just that checking in. [00:46:07] Noticing what's going on, noticing your relationship to it, and then good old CBT, identifying and challenging negative thoughts, cognitive reframing. She had a lot of negative self talk, like she would say, my brain is broken. You know, she's really kind of negative the way she would talk to herself, like, oh, I'm so stupid, you know, things like that. [00:46:25] And I find that a lot with folks, when your brain doesn't work in the way it used to, it's really distressing. A lot of people can have a lot of negative self talk around that, so we worked with. What's another way that you could talk to yourself about that? My brain is healing or my brain is recovering, you know, or, you know, things like that, that kind of just put a shift on it. [00:46:44] That's a little bit less punishing and negative. And that really worked for her. And then act the acceptance and commitment. Um, factors like exploring values in her life, you know, okay, you don't have your job anymore to kind of define who you are, what else is important to you, you know, for a lot of folks, that's family, you know, how can you engage with family, how can you sort of develop that identity as a wife, mom, sister, grandmother, you know, maybe more fully, and what would that mean to you? [00:47:15] Um, and then just increasing that sense of acceptance. Um, it's not about not trying to get better, but it's also about finding that balance of, I'm going to do everything I can to get better, but I'm also going to live. I'm going to live at the same time. That's really important. Um, so I know we're getting low on time, so I'll skip my other, um, Just another case example. [00:47:39] Um, and I'll get to the tools that I use. I often like to share tools with patients, um, that they can take with them and kind of have with them. So this is just kind of a sleep hygiene tips. I love a sleep tracking log to kind of get a sense of what's going on. Relaxation strategies. I love sending mindfulness link. [00:47:58] You know, guided relaxation exercises, guided visualizations, things like that. Patients really seem to love that. Common cognitive distortions, if I feel like they're having a lot of unhelpful thinking styles. Thought tracking worksheets. Sensory grounding techniques for anxiety and panic. I like to send lists of those for patients to work with. [00:48:17] Um, ways to look at your values and your priorities and really kind of lay out, you know, this is what I want to spend my energy on. And pacing worksheets, you know, so people can really focus on what's important to them. Self compassion exercises are a huge one. I find a lot of people have trouble just having basic self compassion. [00:48:39] for a person who's dealing with an illness or a limitation. And so I love to talk about self compassion with patients and kind of see where they're at with that. And then I send a lot of information on tips for finding long term therapists because a lot of people need more than what I can give, um, and would benefit from that, that long term help. [00:48:58] It's not easy to find as we all know. I wish it were easier, but I always try to help patients, um, you know, make that connection if they feel like they want longer term. Um, I also just included here, um, benefits of co managing. So working as part of a team, which is really something I benefit from at Johns Hopkins. [00:49:17] Just being able to have somebody feel that wraparound holistic care. Their providers are talking to each other and they're all people who understand long COVID. Um, so I just wanted to include a couple of things on how that's helpful to have, you know, work with the team. [00:49:39] And then this is just if you're, you know, if you're working with a team, this is how you can help, you know, psychology can really help integrate if a patient is struggling in other therapies like physical therapy or speech therapy, you can really help educate them on that mind body connection and how if their anxiety is coming up in one of those therapies. [00:49:58] How might that affect them? You know, just kind of how all of that is connected. So I really like to to work in teams in that sense and help patients feel like everybody kind of gets what's going on with them and they can use strategies from one therapy to in, you know, engage in another. This is just other helpful resources, information about Long COVID, different guidelines and things that have been developed. [00:50:24] You can check those out. And then my reference is, I'm sorry, I know there's not a lot of time, but I really appreciate your attention and I welcome any questions or comments from anybody. [00:50:36] Continuing Education Information --- [00:50:36] Meghan Beier, PhD: Thank you to the Rowan center for behavioral medicine for hosting live webinars. If you would like to stay informed about future webinar topics, please sign up for our monthly [email protected] backslash learn. The recorded audio and video content is eligible for continuing education. But please be aware that we do not offer CES for the live presentations. To earn continuing education for the recorded presentations professionals are required to listen or watch the complete recorded talk via the find empathy learning platform. For more information and to get your CES, click the link in the show notes or visit find empathy.com. [00:51:16] Q & A --- [00:51:16] Elisabeth Nickels, Ph.D.: thank you so much, Dr. Nickels. Um, it looks like, uh, one person did ask if we could share the slides, so are you comfortable with that? Yeah, yeah, absolutely. Okay, great. Um, so if you send them to me, then I can send them out to the group here. Yeah, I have a lot of links in there, so it's probably easier to just do that. [00:51:40] Great. Any questions? [00:51:42] I just wanted to say, Dr. Nickels, this was an amazing presentation. Very helpful. I can't wait to further explore the studies and the resources that you have included. So, thank you again. so much. I'm glad you're here. Me too. [00:52:02] Lillian. Yeah. Hi. Uh, I'm Lillian, uh, actually right now I have COVID, very ironic, very ironic. Uh, I have a question, um, have you ever experienced working with individuals that they're specializing with diet or any dietician that kind of helps with gut? And I know it's like, it's a big thing, but unfortunately, like our hands are very tight in psychological world and. [00:52:39] Personally, I don't, I never worked with anyone who works in that, like, uh, Um, in the past I worked with MDs that they were prepping, you know, like one or two lectures to kind of give some information to the patient, but have you ever experienced that? And if, if yes, and how was it like for you? And I would like to kind of. [00:53:02] Checking. Yeah, I haven't worked directly like with a dietitian or nutritionist. I've definitely had, you know, these conversations have come up in my discussions with patients about how, you know, eating is for them. A lot of people have GI issues they didn't have before, like new GI issues. So a lot of people do get referred to nutritionists. [00:53:23] And I'm actually thinking about we did have a collaboration where we met with Um, some of the nutritionists at Hopkins to kind of talk about what do you guys know about long COVID? What are you doing with patients? And, and we did a little like sort of cross sectional thing like that. So I'm actually going to look, um, and see if there's something that came out of that. [00:53:42] I think, I don't know if it was recorded or not. Um, but it was basically, I mean, nobody has all the answers. It's so individual to the patient, right? Um, but it's definitely a big, um, a big issue for a lot of folks is I can't eat the things I used to be able to eat. How do I get my nutrition? Um, and so it is really helpful when they're able to work with dietitians or nutritionists, but I think sort of like knowing exactly what helps with COVID isn't as easy of an answer. [00:54:12] It's like really, it's like trial and error and really specific to the patient. Because I feel like with COVID, like I think it has a lot of associations with inflammation. I think sometimes whenever like If, uh, like our hands are tight because of our specialties and like we cannot talk much about anti inflammatory diet. [00:54:33] I mean, right. Yeah, I'm not a nutritionist. So, yeah, I can't go there like sometimes I feel like if we work with them collaboratively, even in pain management, I think. I think it would be interesting to see the result after. [00:54:50] Thank you. Yeah, absolutely. Thank you. There was one comment in the chat, um, which was, uh, any specific sleep hygiene tips or self compassion exercises, um, or if there are like websites or resources that you can send, that would be great. So either describe it or, yeah, go ahead. Yeah. I. I love all these resources. [00:55:18] So yeah, what I'll do is any links that I can put for like self compassion, there's a bunch of great links I can include and I'll put that in the, in the slides, um, and then I'll just attach maybe to the email, like some of the other resources I have that I, that I share with a lot of patients that patients find helpful. [00:55:36] Would that be okay? Some of them, you know, it's a link, but some of it's just, this is a thing that I send patients. Okay. Great. Thank you so much. Oh, yeah. I'd love to share those. Okay. We have one minute left. So does anybody have one quick question? [00:55:54] Okay. Well, thank you so much, Dr. Nickels. I really appreciate you coming and it was a wonderful talk. Thank you all so much. [00:56:03] Final Information --- [00:56:03] Meghan Beier, PhD: This webinar titled, "psychological intervention for patients with long COVID" was hosted as part of the find empathy, behavioral medicine series and featured Dr. Elisabeth Nickels, a counseling psychologist, specializing in health and rehabilitation psychology. Dr. Nickels shared her insights into the psychological impacts of long COVID. She discussed the physiological and mental health outcomes of long COVID. She identified patients who might benefit from psychological interventions. And she outlined various treatment options drawing from her clinical experience at the long COVID clinic at Johns Hopkins university school of medicine. The webinar emphasize the need for multidisciplinary approaches to managing long COVID. It highlighted the importance of patient centered care. And it highlighted the potential for recovery through a combination of medical treatment and psychological support. We hope you will continue to join us for future webinar topics on health rehabilitation and neuropsychology. [00:57:10] Again, as a reminder, if you would like continuing education credits for listening to this episode or watching this webinar. Please click the link in the show notes, or go to find empathy.com. While our education is free for all to access. The proceeds from continuing education, go to support the development of new content. [00:57:32] Our goal is to help people living with challenging medical conditions. [00:57:35] Find the mental health providers who understand their diagnosis. Our education, this podcast and our YouTube channel is focused on increasing the number of mental health providers who can help. If you are a psychologist or a mental health provider that specializes in health populations. Please consider signing up on the free find empathy directory. Go to find empathy.com and click on the link called get listed. [00:58:03] We would love to connect with you on social media. Look for us on all major social media platforms, including Facebook, LinkedIn, Instagram, and TikTok. If you have suggestions for topics you would like covered by this podcast and our webinar channel, please let us know. Our email is [email protected]. Finally, please know that the opinions expressed by the experts today are their own. We are not financially supported by any of the businesses or resources described in today's podcast and webinar. Also remember that the content provided today is for educational purposes only. [00:58:45] Please seek the guidance of your doctor or mental health provider. For any questions you might have regarding your own health or medical condition. 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