Helping patients recover from COVID-19 requires a multidisciplinary team of experts, support outside of the clinic and most importantly, caring. Experts from Mayo Clinic’s COVID-19 Activity Rehabilitation Program discuss lessons learned and best practices from their experiences evaluating and treating patients with post-COVID syndrome.
Featured Expert: Ravindra Ganesh, M.B.B.S., M.D. , consultant, General Internal Medicine; assistant professor of medicine
Featured Expert: Melanie D. Swift, M.D., M.P.H. , senior associate consultant, Preventive Medicine; assistant professor of medicine
Featured Expert: Michael (Mike) P. Trenary, P.T., D.P.T.
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The views and perspectives shared in these resources are presented based on information available at the time of recording.
Well, good morning, everybody. On behalf of the male clinic school of continuous professional Development, I'd like to welcome you to the Mayo Clinic Night covid 19 webinar series. I'm Jeff Patrick. I'm gonna be your host for today's webinar on life after covid. So before we jump in, I'd like to share a few housekeeping items with you today. This webinar is a credit credit by the A m A. For one credit right here. You can see all of our relevant financial disclosures today. So at the end of this call at the end of this weapon, or if you'd like, you'd be able to claim credit by visiting our website male c e dot mail dot e d U. And as you can see with that, hyperlink will be back slash covid 0315 Now, after you've done this, um, gone to the website. If it's your first time visiting, you'll want to go ahead and register an account with us at sea dot mail dot e d u. After. After you've done this, you can go ahead and get logged in. You'll see an access code box. So what you want to do is to type in this access code we have right here. Covid 0315 What this will allow you to do is access the course, complete a short evaluation, and then you have the ability to download or save your certificate. So a few things is what you see at the bottom of this webinar today is there's two functions. There's a chat function, and then there's a Q and A function. Now we've asked for you to use the chat function if you having technical issues, or if you have any questions that aren't specifically for the panel today. If you have questions that you'd like our panel to answer, you want to enter those into the Q and A because those will go right to our Panelists. And they'll either be able to address that live in the moment or during our question and answer time at the end. Um, you'll notice that when there's a question that pops up in the Q and A, you'll be able to upload that. So if you see some questions that are popping up that you would like to also see answer, go and get, go ahead and give them an up vote and our panel will see that rise to the top. So are learning objectives for today's webinar. The life after covid is one. Participants will be able to describe the previous post viral syndromes that occurred with other coronavirus outbreaks. You'll be able to recognize the post covid syndrome PCs understand early care models and recognize the many challenges ahead. So with that, I'd like to introduce our moderator today. This is Dr Greg Meniscus Torn. He is a senior associate consultant and preventative medicine as well as an assistant professor of preventative medicine. So, Doctor finish, I'm going to go ahead and hand it off to you. Well, good morning, everyone. Thank you for spending the start of your week with us today on this special topic. And congratulations if you're here because that means you acknowledged our transition away from daylight savings time. Um, but if you did it and you missed it, then yes, this will be available later on. I believe on the web for recording. Uh, so I had the pleasure of being joined today by several other experts. First is Dr Ravindra Gyanesh and he is my colleague in chronic fatigue. syndrome and fibromyalgia. Next, I'm also joined by Dr Mary Kasten. She's one of my colleagues in infectious diseases, and she has done a lot of great work with our patients, looking at reactivation scenarios and so forth. I also have Dr Melanie Swift. She's in another consultant with me in the division of preventive and occupational medicine, and she is had an extensive history with everything on Covid Frontline care team, um, contact tracing as well as, um, everything vaccine related here, I'll say. And then, finally, I have Mr Michael Trenary. He is my colleague in physical medicine and rehab and works hands on with a lot of our patients who are suffering from post Covid syndrome. And with that, we'll get in today's topic here. So next live, please. So it's hard to believe. But over a year now, uh, it was when we first started hearing about cases of a new pneumonia occurring in Wuhan, China, and since then, our world has been changed, probably more than any of us could ever have imagined. From the early reports ICUs filling up to the changes in social life and work life and most recently, the vaccine rollout the Covid 19 pandemic has been one challenge after another. But unfortunately, as we now know, those burdens that we have seen already are only the first chapter in this pandemic. Next slide, please. Mhm and the next lot. Sorry. The next chapter at this point deals with life after covid and unfortunately, what many patients around the world are now calling post covid syndrome. So I like to set the stage about that topic with a clinical vignette. This is a gentleman that is in your office and is here to see you. He's an ICU nurse. He had Covid 19 approximately two months ago, and his initial infection was not much to write home about. He had some fevers and muscle aches for about two weeks or a week and then tried to get back to work. But unfortunately, as he recovered, he went on to experience ongoing fatigue, shortness of breath and also troubles multitasking. And as he went back into the workplace, this became apparent as he was having difficulties doing a lot of his normal high risk activities, managing medications, placing I V lines and so forth, and this became very apparent to his colleagues and his supervisors. Eventually he had to leave work, and this didn't go very well for obvious reasons. His support. His supervisor was not very supportive and couldn't understand why he had a different recovery than all of the other staff who had had covid and been able to come back to work. Now he's out of work. He doesn't know what to do. He is suffering from medical problems and now getting increasing anxiety and depression. This is the challenge for health care today and for many patients in life after covid next slide. So when we begin our discussion about post Covid syndrome, we really need to actually start in the past. And remember that this is not the first time we have had a coronavirus outbreak. We had SARS in 2002 and murders in 2012. And just like with Covid 19, with those post bar with those outbreaks, we also saw a post viral condition. So, for example, in one study that looked at 42 hospitalized patients one month after their illness, one third of them were experiencing ongoing shortness of breath and fatigue. In another study of 43 hospitalized patients looking a little farther out about eight weeks. Those patients who are experiencing ongoing pulmonary function abnormalities and respiratory muscle weakness. And it's important to know that the shortness of breath and fatigue we're not the only complaints that we saw during the previous outbreaks, but also things such as muscle eggs, troubles with cognition and a significant anxiety and depression. Next line. Prognosis wise, we do have some information. Fortunately, in a large study that looked at 258 hospitalized patients, improvements in pulmonary function testing were noted between two and three months. In a smaller subset of patients, 55 hospitalized patients. Improvements in six minute walking distance, which is a usual surrogate for cardiovascular ability, improved between three and six months. Unfortunately for both of these groups, a plateau in recovery was seen at approximately six months. Excellent and unfortunately, those improvements in objective measurements did not easily transition or correlate with real world function. In a study that looked at 117 again hospitalized patients at how they were doing one year after their infection, almost 16% had not yet returned to work. In addition, they scored a one standard deviation below the norm for the SF 36 which is a measure or survey of quality of life in 55 hospitalized patients that went farther out looking at two years, 7% of non healthcare workers had not yet returned back to work, and rather alarmingly things were worse for healthcare workers. 30% had not returned back to work in two years next time. So now that we understand the previous history of coronavirus post viral syndromes, let's turn our attention back to Covid 19 and the topic that he had here next slide. So what is post Kobe syndrome? That is a really good question, and right now there really isn't any universal definition. In fact, we don't need to have a universal name right now. The media has often recalled called this long haul covid or long haulers covid. The NIH is using past for a post acute sequentially of Cro V two and then here at the Mayo Clinic again. We have been using the term post covid syndrome, and we do have a working case definition for that. According to our definition, patient with post covid syndrome needs to have a positive PCR test which indicates an acute affection with Covid. 19 symptoms need to be continuing for more than four weeks after acute infection start, and the symptoms need to be consistent with PCs. Excellent. So what are the symptoms of post Kobe syndrome? I think many of you have already seen this figure that was published in the Journal of the American Medical Association in August of 2020 and I think it does a pretty good job of showing the variety of symptoms that can occur with post Kobe syndrome. The most common is fatigue and followed shortly after by Disney. Um, it's important to remember that the fatigue with post covid syndrome is not a normal fatigue. And normal fatigue, I would say, are things like being tired after a really bad night asleep or even being fatigued after having a cold or influenza. But the fatigue tends to be quite profound. So, for example, I will have patients who say that they will do something as simple as take out their trash or do their laundry, and then they will have to take a nap for 3 to 4 hours or even have symptoms that last for days. afterwards. Next slide question, we often get asked is. How often does post Covid syndrome occur? How much should we expect to see this? Initially, the numbers were quite all over the place, and this reflects the diverse populations that were used in studies. So, for example, in one study in Italy looking at 100 and 43 patients, almost 80% of those patients had ongoing symptoms at two months, which is quite a horrific statistic. A much larger survey in London found that almost 10% of patients were suffering symptoms at four weeks now, here at the Mayo Clinic, we have had the opportunity to treat a large number of patients through our Covid frontline care team. And we did survey those patients recently, and we found that approximately 10 to 15% of patients were suffering from symptoms about four weeks after their illness. More recently, the University of Washington published a study that was listed in the Journal of the American Medical Association again, and they looked at patients six months out after their infection, and their numbers are a little bit more startling. Approximately 30% of our patients were experiencing symptoms ongoing after six months. Next time, As for risk factors, we are still trying to figure this out. We had assumed that the same risk factors that apply to acute severe illness would also apply to post Covid syndrome, things like advanced age and having significant comorbidities pre illness. But we don't have any good, solid evidence yet. I will say that in patients who have been hospitalist and then go on to develop PCs, their cases tend to be more severe. However, the majority of patients that we have seen here in our car clinic, which I'll talk about here in a second, have not been hospitalized. If I would say less than 20% of our patients that we see have been hospitalized. In addition, only about a quarter of them had any form of pre existing respiratory, cardiac or mental health condition. Hardly any of them had any pre existing chronic fatigue syndrome or fibromyalgia. In addition, our patients tend to be younger than the high risk age groups associated with acute severe illness, and we tend to see a dominance of female gender for unknown reasons next line. So with that, let's transition to treatment here and I'm gonna preface this section by saying that this is, of course, anecdotal evidence from where what we have been doing here at Mayo Clinic right now, they're just is not enough research really about treatment outcomes? Um, the treatment modalities that we have used here are based on our experiences with the previous SARS and MERS outbreaks, consensus among multiple specialties, as well as some of the limited research looking at outcomes early on after covid 19. So since the early spring of 2020 as the first patients coming out of the hospital, we're trying to recover from covid infection. Our division of preventive and occupational medicine got asked to assist these patients with getting back on their feeding and particularly getting back to work. And it became apparent very early on that patients in the post covid setting sorry, post acute setting we're not going to have a normal recovery. And to help with these patients, we assembled informally a team of different specialists to help give these patients the help they needed. But as more and more patients began to show difficulties with getting back, this team became formalized as the Covid activity rehab program in about June of 2020. And yes, we affectionately call it Carb. Um, since that time period, we've had a chance to work with approximately 300 patients from across the country and have learned a lot from that experience. But unfortunately, that's also not enough to help the patients around the world and around the country who are coming down with this. And Mayo Clinic has recently expanded it's post covid care program, and now we have an additional clinic called the Post Covid Care Clinic, affectionately known as Peacock. Yes, we do like our animal names here. And Carp is now designed for patients who are in the early post acute stage between 0 to 3 months, while the Peacock program is helpful for patients who are a little bit farther out approximately 3 to 6 months. And, of course, on top of all of this, we still have our specialist evaluations, such as our pots clinic and our pulmonary clinic, to help patients who are having more specific and singular difficulties after recovery. Next line. Yeah, so I'm going to speak a little bit here about the carp treatment, and this is me a broad overview. And then we can kind of go through more of the details if you'd like during the question and answer session. So carb treatment basically boils down to four different buckets of treatment. Post acute monitoring, first of all, psychosocial support. Then there's rehab management of the economy A and then cognitive rehabilitation next line. So post acute management. What is this about? So we know from research that there can be a lot of complications after having a covid 19 infection. So, for example, just to kind of rattle off some of the research, about 31% of ICU patients experience a thrombosis symbolic event. About 60% of patients in one study were found to have myocardial inflammation more than two months out from their infection. Perhaps most alarming in a study in Michigan, of 1200 patients have been discharged from the hospital and looking at their outcomes. After about 60 days, 10% of the patients that were in the ICU and were discharged went on to eventually die, and 6% of the general ward patients went on to die and 15% were readmitted. So the take home point is that things can go terribly wrong after having um, the acute infection and during the recovery stage. And one of the first things that we do when we interact with the patient with ongoing symptoms is making sure that there is nothing more sinister that's going on. That could explain their symptoms, like shortness of breath due to, um, a pulmonary embolism or de vein thrombosis. Next line. So next up is the psychosocial support and psychosocial assessment. So what is this about? Well, if there is one universal that I have found amongst all patients that we have seen as part of the car program, it's that they unfortunately feel abandoned. And this is understandable, unfortunately, how this would happen. This is a very new condition. There's not a lot of information about their for patients and providers, and patients are often getting either told that there's nothing they can do or their symptoms are due to depression and anxiety alone. Or are you gonna have patients tell me that their providers told them they just need to suck it up or get tough? And this is just part of life. Unfortunately, that leads patients to a lot of attorney into themselves Guilt self doubt is this trouble recovery saying something about their character or their resiliency? And then this is followed up by actual clinical depression, anxiety and, in some cases, post traumatic stress disorder. And this fits with some of the research in some studies that have looked at the needs of patients who are recovering from Covid 19. Approximately 13% reported needing some form of psychological support. So one of the most powerful things that we do for patients is almost the simplest for providers, and that's just to listen. And we empathize. And that can be quite healing for patients to share what they've been going through and to know that they're not alone. However, it is a skill because we have to be careful not to medicalize or catastrophes with the patient as well. Next line. Alright, rehab. So, of course, it's understandable that patients who are covering from an acute illness are going to have troubles with their troubles with the condition. Excuse me, and we have actual studies from SARS and MERS and covid that show that there are reductions in cardiopulmonary exercise test capabilities. Vo two max. Six minute walking distance. You name it. But what that does it mean, is that patients need to adopt a mantra of no pain, no gain, hit the gym, turn on the training montage music and go at it. And in fact, this can be quite damaging for patients. What we have seen a lot with post Kobe syndrome patients is that they can do activity and then suffer a flare of their symptoms for hours, even days, as I mentioned earlier. And many patients have described this to me as a vicious cycle, which makes sense. So patients are eager to get back to their normal lives, do the things that they're doing, like lifting weights in this picture, so they will feel a bit better, go back at it and then have a flair of their symptoms that leads them down and out for days to a week. During that time period, they get weaker, but they are arrested, and so they want to try again. And so they try to do something, maybe even a little bit more vigorous, because they feel like all right, the second time around is gonna be the lucky one, and then they get reconditioned and flared up again, and they go round and round and round until they're depressed, very de conditioned and unable to do anything. Um, now, this may seem anecdotal next slide, but this is actually something that we have seen in other related conditions, like chronic fatigue syndrome and fibromyalgia. And it's something called post exertion or malaise. And studies have shown that in patients with chronic fatigue syndrome after doing physical stress, almost 30 30% report some form of fatigue or flu like symptoms or muscle pain. In another study that looked and compared things like graded exercise and cognitive behavioral therapy and paste activity in this patient population graded exercise resulted in a negative effect in almost 75% of patients. Cognitive behavioral therapy and particularly paced activity had a much better effect almost 80 to 82% positive effect with the paste activity next line. So the important take home point for this, and for providers and patients, is that rehabilitation reconditioning does not equal exercise. What we teach here is the use of an adaptive paste therapy, and it's not just simply stop when it hurts. In fact, we often find patients say that they can't tell when they're doing something if they're going to have flares afterwards. So we teach low, low grade, low intensity, consistent activity with very gradual increases and, for example, going from 10 minutes to 13 minutes of walking between weeks. We also do a bit of therapy cognitively for these patients and help them understand that they do have a condition right now that's limiting their functional ability, and therefore they're not gonna be able to do everything that they normally do during the day. And so they need to prioritize and plan. Now, when I say we do this, Um, no, it's not actually me. I wish I was that skilled, but we actually rely heavily on our Mayo Clinic Work Rehab center and our physical and occupational therapist team there. This is a model that we are used to using in the treatment of injured workers and workers compensation, because they often have a lot of psychosocial activities and risk factors that impair recovery. Next slide. Just some therapy specifics here we can go into this a little bit more later, now that Mr Turner is with us for the panel, but things that they do specifically or helped define individualized activity thresholds. Or there's not a one shoe fits all type of approach. We help them moderate activities. And we do this by help monitoring vital signs and letting patients get some biofeedback when they are having hands on sessions. Activities are also tailored to help patients recover the ability and confidence to get back to work. And we also do a fair amount of pulmonary rehab with diaphragmatic breathing. Excellent occupational therapy is a huge part of this as well. It's not just about getting the muscles stronger and building endurance. Um, the occupational therapist can help assess prior and current functional abilities, address psychosocial barriers and establish important self care routines, including making sure patients get back into a normal schedule of sleep and wake next line. Alright, this anemia so autonomic dysfunction that's the part of the just for the lay audience is part of the nervous system that controls everything that we're not usually aware about. Like our G i system. The autonomic dysfunction is something that we have seen in previous coronavirus outbreaks like SARS, and the symptoms associated with autonomic dysfunction are similar to what many patients with post covid syndrome are presenting with things like tachycardia, fatigue, tremors, anxiety pots or poor postural Ortho synthetic tachycardia syndrome. A form of dysrhythmia is something that we have also seen associated with viral illnesses, and we also have reports already of pots in covid 19. So evaluation for autonomic dysfunction through things like tilt table test or thermal regulatory sweat test is part of the analysis that we do here. We also offer patients a lot of conservative education, education and conservative treatment for autonomic dysfunction, things like adequate fluid intake or salt intake. And this has been reported to be quite helpful amongst our patient population. Next line, the final step is brain rehabilitation. So one thing that the JAMA figure from earlier about symptoms did not really mention is that there is a significant amount of people who are suffering from quote unquote brain fog, and it's a subjective brain falling. We don't have good quantification of the deficits, but patients consistently report things such as difficulties with multitasking, short term memory and difficulties maintaining concentration. And it's interesting that of all the symptoms that we see, this is a symptom that most, uh, impairs individuals at work. A phrase that often or scenario that I often get told is that patients will be unable to do a relatively complex task that they have done for years as part of their job. Um, after covid 19 things like balancing a certain spreadsheet or placing I. V s and so forth. Now this seems very familiar to what we have seen in post concussion syndrome as well. Unfortunately, we do have a brain rehab clinic here at mail, and we often have patients referred to this clinic to have some neuro muscular re training and talking to them about pacing, management of headaches and sleep improvement. Next line. Now, as I mentioned earlier, we do have a new service here called the Peacock. The post Covid care clinic and I wanted to talk a little bit about that because this is fairly new. So what we have seen right now there's essentially two buckets of individuals who go through the post Covid syndrome. One bucket seems to get better in about the 3 to 4 month window, uh, relatively rapidly. However, after that, there tends to be a slower rate of recovery. Still, recovery but slower rate and we start to wonder. Is this looking more like chronic fatigue syndrome? So for these patients we have you are assembled our chronic fatigue specialists into a defined clinic that uses a little bit different of a strategy to help treat patients as they continue to heal. So these are things like wellness coaching, virtual education, um, and again a multidisciplinary team next line. So this is the one thing I added in just recently, and I know I get a lot of questions about this early outcomes. So again, this is anecdotal evidence of just the population of patients that have presented here to an academic medical center in the Midwest. What are the early outcomes? So right now, just looking at our first set of patients that we have had about 20% made a full recovery. And those are individuals who started with very limited function, such as individuals who are not able to walk across your bedroom to start with, and they have been able to get back to their normal lives and including full duty work. And those are the only people that we included in the quote unquote graduated class. They were able to get back to full duty work. The time frame we noticed was about four months after the acute infection. So people were getting back to work. Four months after their infections start, they did seem to have an earlier start of treatment compared to the rest of the population in our clinic. He also had less cognitive complaints than the rest of the population. Um, right now, again, these are just observations, not inferences. I'm not saying that kind of complaints are associated with a longer, um, treatment course, but just some starts to looking at outcomes here. Excellent. All right. So what are the next steps associated with post Covid syndrome? Next slide. So, really, the first step in planning for the future of this is first to realize the magnitude of the situation. And so, according to the statistics click here, approximately 29 million cases of COVID 19 occur have occurred in the United States that the last week, if we estimate on the low end, that 10% of these cases will have post covid syndrome, that's 2.9 million people. And if we do a little bit further, we can estimate that approximately 30% of patients are going to have limitations in their functional ability and be unable to return to work. And that's a little bit more than 870,000 people in the U. S. Who are unable to live their lives fully and work. And these are not nameless numbers. These are teachers, nurses, physicians, firefighters, you name it. So it's important to remember as a first step in dealing with the future of post conviction Dream is that this is a condition and challenge not just for health care and for patients, but also for our country, our society and our economy. Next line, So in particular, what are the things that we need for the future? Well, first up, we need new treatment programs. Yes, we've got lots of great programs around the country. Um, Mayo Clinic, Mount Sinai, Johns Hopkins. You name it, but we need to be able to get this treatment out to the local communities as well, because not everyone can travel to have evaluations. In addition, these treatment is very expensive typically, and there haven't been a lot of discussions yet about how insurance is going to cover these kinds of treatments for patients. Likewise, there are many patients now who are suffering from a covid 19 infection related to their work, and we need to approach the subject in workers' compensation. As we saw in the previous slide, there's going to be a lot of people who are out of work, and this has important implications for short and long term disability as well as even Social Security disability. And like I mentioned earlier, there's just not a lot of good information out there about this condition. And so we need better education for providers and employers next time. And then, of course, the next really big thing is research and what I'm most excited about. For a long time we have recognized that there can be post viral conditions like with stars and mirrors or chronic fatigue syndrome fibromyalgia. But we still don't have a good path, a physiologic basis for these conditions. So there needs to be a push for basic research, trying to identify the biochemical basis for these conditions and what it means for the immune system. Along those lines, there haven't been any diagnostics that we can do at this point that specifically looked for post covid syndrome. So hopefully we can develop some of these after some of the basic research is done. And, of course, the vaccine, which is all new science this year as well. We don't have a good understanding of how this would interact with post office syndrome, and some more research needs to be done there. And then finally, most importantly, we need some good randomized clinical trials to look at the methods and outcomes and so we can develop an evidence based guideline for treatment next slide and three minutes over there. So sorry about that, but I try to go as fast as I can. But with that, I think we'll open it up to, um, questions here, and my staff is going to help me out. So cooking on the Q and A here. Alright, so I've got a whole bunch of questions here. Open 17 and first one up here is from my colleague Dr Nick Finish would like to answer here, Um, do you think you are increasing anxiety and depression by starting at four weeks? Should it extend a longer? What are your numbers? If you use the definition at eight weeks, 12 weeks would it be my? Would it be more reassuring for patients to know up front that recovery might take longer? Good question. Yeah, it's a really great question, and I think that from our perspective, when patients reach out to us looking for an appointment, they're experiencing significant symptoms. They have great anxiety. Sorry about when they can return to normal, when they can get back to work. What their future looks like. And a lot of what we do in our initial visit is explain to them what we're seeing, how it's similar to other patients and what the outcome looks like. So I think that we actually wind up reducing anxiety and depression by putting things in perspective. And honestly, we don't really see a lot of people coming in here at four weeks. He chose four weeks at the time point that most people have recovered from the acute illness. Excellent. Yeah, I would agree that it seems like the longer that patients are out from their infection and without any kind of hope or help, this can actually make things worse for them. So I think the sooner the better. All right, let's see. I'm sorry, but I think it's scrolling down big time here. Okay, There is a question that Dr Swift would like to answer. I think that'd be perfect. Um, I have a patient with symptoms who was mildly ill but never had a covid test. Um, he hopes Sorry. Just scroll down. I think it was along the line. Okay, here we go. Um, does the vaccine make it hard to determine if the patient ever had covid? But testing can I do to help figure this out? Um, so, uh, it's important at this point to talk a little bit about what kind of immune response is created by the vaccine that can be detected. Syrah logically. And that depends upon the vaccine and where you are in the world where you're being vaccinated. Um, in the United States, the three vaccines that are authorized under emergency use, which are the Pfizer Moderna and Johnson or Johnson and Johnson vaccine, as well as the AstraZeneca vaccine, which is authorized in much of the rest of the world. They all result in production of the spike protein, Um, and the only antibodies that we measure at post vaccine that we can measure post vaccine to pick that up. Our anti spike antibodies. Many of the clinical, um, serology tests for covid detect i G against nuclear capsules id protein, which is not something that is produced following following vaccination with the spike protein based, um, vaccines. So check with the lab here at the Mayo Clinic are routine. Um, covid serology serology is detecting nuclear capsules. Did antibody and not spike antibody? There are commercial tests that do detect spike antibody, and some detect both, so you need to check with your lab and see what they're actually using. But if you're but you can test someone following infection with a nuclear capsules did antibody and determine if they had covid. But that recognized that's going to wane over time. And so you kind of need to know how long ago that illness was. Um, around the world, there are other forms of vaccine. So there's the, um, sign a farm, one that's in China, That's a killed virus. And I think the immune response to that one might be different. I wonder if Dr Cast and wanted to comment on on other immune responses that could be Cyril logically detected. No, I think you addressed it really well and I'm not. I'm really only familiar with the immune responses of the vaccines that we have here in the US, and what you said is exactly right. It looks like there's another question here for you, Dr Castle. That's kind of similar to this and maybe the same answer. But just to make sure, in post measles in adults there is quite similar picture. Is post Covid syndrome specific for covid? Or is it something that is common for other serious viral infections in adults because they have almost been eliminated through vaccination? So, you know, when I started to hear about post Covid syndrome, I said, Boy, this sounds just like what I've been seeing in the outpatient ID clinic for 30 years, and I worked a lot in general internal medicine, and I see garnish nodding his head because this, you know, brain fog patients would use those that words exactly. And you know, they never read about other patients, but they talk about brain fog. They talk about post exertion, all fatigue, and this is what started to be reported with post covid. I. I personally think that what we're seeing with post covid syndrome is the same thing. Most likely that has happened with other infections. It's just that all of a sudden we have this novel virus right that none of us had ever seen before. So we have this huge influx of patients who get new covid and then large percent of them, maybe more than what we've seen with other viral infections. And I don't know if that's because this is something that's only happening to people when they're adults, whereas like with influenza with them, you know, um, other covid viruses that we all get were exposed to them as kids. Maybe if we hadn't been exposed to them until we're an adult, we would get the same thing. I don't know. That's just my, um, hypothetical thinking, but I think this is a very similar thing to what we see with other viruses, including with measles. And I really have to wonder if this ImmuLogic reaction isn't more common with Covid because none of us have seen it before and it's only occurring in adulthood. I would like to to agree completely with Dr Cast, and we see this a lot with infectious agents e b v lime Zika. You name it. Um, I think that one of the things that we're going to see here is because of the sheer volume of people who had covid at one time point. We have a large volume of people with post covid symptoms, and thankfully, the NIH has kind of gotten behind us and doing some research funding in so we can study this. Lessons learned from post covid syndrome will be applicable. The future post viral infections. And that's a great thing. Yeah, I totally agree. I think we're going to learn stuff from covid that we can apply to all of these other infections. And we have this opportunity now because we have so many people really unfortunate that we have so many people suffering from this, but hopefully we can use it as an opportunity. Excellent. Thank you. All right. I've got some questions here related to the therapy side of things. Um, so I'll pose us to, uh, Michael here. So when it comes to starting to things here when it comes to starting a covid clinic with pulmonary rehab, where should I focus my efforts When it comes to education? And what measures do you find helpful when pacing activity during? We have so, uh, perceived exertion. Heart rate s p 02 Yeah. So what we What we do is when we initially evaluate them. Obviously we're doing all the vital signs, the heart rate, blood pressure, oxygen saturation levels. And then we'll do a six minute walk test on them, and we kind of just see how they progress through that six minutes, and then we kind of develop our program from there. But what we're asking them is perceived exertion and perceived Estonia that's using the modified Borg scale. So that's kind of how we, um, quantify what their abilities are. And then we use that to when we develop their program, we use the modified work scale. They use it at home for things like if they're doing daily activities, maybe they're going to rate themselves as high as it, too. So it's just a real slight amount of work or shortness of breath all the way up to a 3 to 4, which is moderate to somewhat hard. As far as starting out your initial education. The biggest thing I find is with occupational therapy getting through the psychosocial barriers. I think that would be a great place to start. Excellent. All right, so I'm getting a lot of questions here about what did I mean by medicalizing catastrophizing, which is a great term here. So I'm gonna go ahead and go through that. So, um, we have seen in, Well, let me start back here. So my career before all of this is helping people who are injured at work get back to their job, and that often involves treatment of low back pain. And so I would have called myself a low back pain specialist before this. But one of the things that we have seen in research is that the initial interaction for patient when they visit provider with low back pain can really set the tone in the recovery for the rest of that experience. And so that's where these terms medicalizing catastrophe eyes come into play. So it's easy to, um, turn someone's concerns that may be related to more stress and worry into a physical medical condition. So they just to give an example, um, in the low back situation, if a provider tells someone, Look, this is part of normal life patients do have low back pain quite a bit. Um, what you're experiencing is very normal for a low back pain situation, but this is going to get better. And we're gonna help you walk through this process. And I think that you're gonna get back on your feet. Um, like nothing has ever happened. That would be not medicalizing catastrophizing versus the other scenario, which is Oh, my gosh. Um, this looks really painful. You should probably just take off work for the next six weeks. This order an MRI cat scan, do a lumbar puncture and make sure that you know your spine is not broken or something like that. Um, I hope that we can get you back, but it's not looking good. It's sort of self fulfilling, right? So you're not going to get better and good if that's what you think is going on from the get go. So specifically, when I talk to patients with post covid syndrome, the first thing I share with them is that their symptoms I'm not not sugarcoating things, you know, Their symptoms aren't consistent, I tell them, but, um, I tell them their symptoms are consistent with what we have been seeing with post Covid syndrome. The other 300 patients that we've seen, um and then usually the first thing that comes out of their mouths is Oh, my gosh, that is so good to hear. I thought I was really I thought I was crazy. And so that can be really healing as well. And then I tell them about the normal prognosis that typically this is something that gets better. Everyone that we're treating is having progression and getting some of their condition, some of their function back, even having a full recovery. But, yes, there are some people out there who are still lingering, but we're going to help you out as much as we can and work through this together. So that gives some patients a good idea of the realistic nature of the condition. Um, if you tell them that this is, you know, terrible, we don't know what's going on. Uh, there's not gonna be any hope. Have you thought about filling out Social Security disability forms? Um, again, it's a self fulfilling prophecy. So it's a It's a delicate balance. Um, all right, now that I've totally lost track of all the questions here. Let's see. I'm gonna scroll on down. I don't got that there get there. Whether they're just add to that, we look for another question. So in Dr Ganache might, you know, probably knows the same thing, But in chronic fatigue syndrome, you know, we've really tried hard not to put people on disability because that seems again to be a kind of self fulfilling thing. And I really think of patients with post covid syndrome to be similar to the patients with chronic fatigue syndrome who had it come up after a viral infection. You know, I always thought of chronic fatigue syndrome is being kind of this waste basket bucket. But in that bucket is patients who looked just like post covid fatigue syndrome, who their symptoms started after infection. And, um, here's another great one that we get a lot for you, Dr Kasten. At what point do these patients cease to be contagious? Oh, yeah. So you know, as long as you're not immuno suppressed, it doesn't matter if you develop post covid fatigue syndrome or not with regards to infection. Um, if you had serious illness, you know where you needed to be hospitalized. We want you to be 20 days out of your instead of your symptoms. If you had pretty mild illness and you didn't have to be hospitalized, you didn't need oxygen. We say 10 days now for immuno suppressed patients. We are seeing some patients who remain infectious longer, but those are rare patients. So I would say you can use that 10 and 20 days as guidelines. I think that's really important information for patients to know, too, because one of the sources of stress for patients is that interaction with your employers and their fellow colleagues. And so oftentimes, if they are having any kind of prolonged symptoms, um, at work or problem symptoms, either the employer or colleagues are afraid of them, and it shows, or the patient themselves is really reluctant to get help. Um, there is a certain stigma that we have found to be associated with post covid syndrome. And so one way to tackle that is better education for both patients and providers. Yeah, um, any information is this, I guess, is for me. Um, any information on brain fog and persistent music slash conversations that interfere with normal functioning and conversation. Um, good question. So, like I said, you know, we asked our patients here, were you experiencing any form of cognitive impairment? And almost 50% said yes, because we were really focused early on on just getting patients in the door to meet with them. We didn't do any specific testing, so I can't quantify that cognitive dysfunction, so I'm going to still call it a subjective cognitive dysfunction. Um, I have had patients report that tinnitus, um, can be quite a different something that can occur in post covid syndrome. It can be quite difficult. Um, I had one patient who had difficulties with speech, not just, you know, maintaining word finding and concentrations, but speech, uh, stuttering, for example. Like like me just now. Um, I don't have a postcode visitor, as far as I know. Uh, so there could be a wide variety of presentations with that? Um, I don't quite understand yet why this is occurring. It's most likely multifactorial. Of course, we don't have good evidence incorrectly farmland overcast and that there is an actual infection that occurred in the brain with covid 19 virus. Um, I thinking this is more related to either perhaps or hyper immune state or inflammatory state as well as you know, many pages. Not sleeping well, stress and so forth. Yeah, I don't think for these kind of neurological mental symptoms that you need to have had an infection in the brain. Like I say, brain fog. We've seen after so many things that didn't seem to have any type of brain infection. So I agree with you. I mean, my theory has been this is some kind of inflammatory immune thing that doesn't get turned off. And I think that's the same theory that a lot of people have with post covid. And hopefully we will learn more and eventually, you know, have objective testing for it. But time will tell, um, I'm getting a lot of questions here, and Doctor doesn't have to rely on you to help me with this one, too, because we're both in on this, but autonomic dysfunction and dissent. Namibia. What did I mean by that? Um, So again, the autonomic nervous system is part of the nervous system that helps control everything we're not aware of. So g I system blood vessel constriction, heart rate when we go from sitting to standing also part of our fight or flight response. And we have seen dysfunction with this in a lot of different conditions. And I would say that, um, just anecdotally of all the tests that we do here for patients and carp, um, the testing for the autonomic nervous system tends to be the most frequently abnormal, and it's easy to relate that kind of dysfunction to the patient's symptoms. So one thing that we hear a lot about his technique rd and dizziness when standing well, that makes sense. Um, and that's pretty great. We also think this could be related to somehow the brain fog, muscle pains, chest discomfort and so forth. Most patients that we have worked with. We get them involved in a virtual autonomic education clinic that we have here at mail. This can be done from a distance, and it teaches things like, um, you know, lifestyle changes. There's this, uh, term called graduated standing that can be done. Um, saltwater. Sorry that salt water intake, fluid intake and adequate salt intake as well. For some of these patients, especially those who are experiencing tech a cardia, we may use medications like panel law, and that's been helpful for some individuals. We also think that this is related to a generalist, uh, neuropathy particular, a small fiber neuropathy. And we've had a lot of patients do really well with a medication called gabapentin, which is an old medicine used for, uh, neuropathic pain, like in diabetes. And, uh so that's what we're talking about when we relate to autonomic dysfunction. And yes, um, the reason we're focusing on here, at least in the car program, is that patients have had good relief of their symptoms. We go down this road, Doctor, do you have anything you wanted to add from the kind of fatigue standpoint? Um, yeah. So the thing to add for the patient is that when we're balanced between our parasympathetic nervous system, which is the part that allows us to relax and do things and the sympathetic nervous system which guards us up for fight or flight were, we're fine. What happens in these post viral syndromes and in parts is that sympathetic nervous system, which is that fight or flight gets overactive. And that is that imbalance is what makes people feel this terrible so I we're trying to figure out why that occurs. But it's a very common theme across a lot of the chronic fatigue, fibromyalgia parts patients. And we do exactly the same approaches nor clinics that Dr Van just spoke about. And they've been pretty effective for those patients. Some, um, I'm gonna just circle back around here. I think we have time for two more questions here, and I'm gonna go to, uh, Mr Connery and Doctor Surgeon Dr. Cast in here. First time about the vaccine. There have been reports that some individuals are getting relief from post covid syndrome after getting vaccinated. Um, I have really been studied this much, but I'm paying enough attention to it now that I'm kind of logging the patients that have experienced as, um, Do you have any thoughts on vaccine related improvement? Is this possible? Even from a biochemical standpoint, So, um, this is the cutting edge or almost bleeding edge of medicine right here, right? This is rapidly evolving. Vaccines are very new. Post covid syndrome is a recently recognized the intersection of the two gives us limited opportunity to do any large studies. There are anecdotes at this point. Um, but But again, um, and there are a couple of theories. One theory is perhaps there's some latency of the virus persisting or viral particles persisting that the immune system's reacting to another. Is that perhaps just this sort of hyper immune state exists, and vaccine causes some sort of reset button to get hit? Um, I'd like Dr Castings thought on that. And I can I can comment more generally on vaccination after covid vaccine if there's interest in that as well. But Dr Casting, do you want to mention anything about this immune reaction? No, I mean, I don't I actually don't no very much. I've heard of people getting worse after vaccination, and I've heard of people getting better. So I you know, I don't I don't really. I think we're just going to have to give it more time and see if anything flushes out. Like you said, Yeah, I think I think more is going to come because this is an area we're hearing some anecdote that's that's worthy of investigating and probably will see a case series come out. Uh, as far as if I could just mentioned the issue of getting vaccinated after having covid and feeling worse. And I saw several questions along that line in the Q and A. Um so there's again limited data there. In the Phase three trials, there were very few individuals for the Pfizer and Moderna trials who had actually had covid prior. Um, it's like less than 1000 for Pfizer in less than 700 from Moderna. Larger cohort had had a covid prior to enrolling in the J and J study. So, um what? Um, but very little was assessed in terms of their reactions. There were a couple of researcher research groups that have looked into this. One group from University of Maryland has now published their findings on the serological response, um, to getting a dose of an M RNA vaccine after having had covid, and they show a more robust initial immune serological response. There's another group from Mount Sinai that has an article out in pre print that hasn't yet been peer reviewed. They showed both a more robust serial logic, initial response to one dose as well as more severe systemic side effects. And so that's probably, in my opinion, what people are reporting when they say, You know, I had covid Then I got the vaccine and I got worse or my covid came back. It's not that the covid came back. It's that this more robust immune response likely stimulated more side effect. Um, the A C I. P recently considered this question of should we to conserve vaccine only give people one dose of covid vaccine following prior infection? I think that they sort of punted that to get a little more data. They did not decide to change the recommendations. At this point, it's still recommended to take the full series. I do think there will be more exploration on that and more to come. So it's one of those unanswered questions at this point right now. The recommendations finished the series perfect. All right, I'm gonna turn the last question here over to, um, Mr Trainer, because one of the things that I've seen for patients is they often don't know what to do. Starting at home. Um, do you have any general recommendations regarding reconditioning at home? Because, again, not everyone can get in to be seen. What I do as an approach from physical therapy standpoint is I just try to develop real, real simple, keep it to no more than six exercises, 10 repetitions and then with the six exercises I just try to do, too, for the upper body, two for the court to for the lower body. But honestly, the best thing if they're struggling with getting back into some kind of a routine is to meet with their physical therapists and occupational therapist. And we do have some guidelines available on Ask male expert, um to try to help these therapy areas that are, uh, not as up to date on helping these patients out. So I would recommend going to that therapy guideline. I would give you a great start with your patients. I'll just add to that. Having seen people for 30 years with other post viral syndromes, I've just used a really common sense approach, and for some people it really works. I say. Everybody has to figure out for themselves. If something is wiping you out, then you should not be doing it, and I want you to do less. But then I want you to do that consistently every day. And if you can tolerate walking on the treadmill for five minutes. You know, at a certain level, the next week, I want you to do six minutes. And this is you know, it's just been a common sense approach that I've used with my patients. And it seems very similar to the pacing. What you have talked about doing in the, um, clinic formally. So that was really interesting for me to hear. We always talk about that over doing leads to under doing so. If you overdo it one day, then you might have a couple of days where you're not doing anything, and that's not helping. Helping to recover. So we talk about that with the moderation of activity, make sure you do just little bits at a time. Yeah, I like that phrase. I think I'm gonna use that for my autobiography over doing is under doing. Um Well, thank everybody wanted to follow up on 22 points that have come up in the chat here. Um, I ever met in, so I have not used every method for this. I just don't have enough information yet in order to safely use that kind of medication for patients. Um, am I doing small skin biopsies for the small fiber neuropathy. No, I haven't done that quite yet as well. Often times when we see patients with autonomic dysfunction, it's not very black and white, right? So there's a lot of different factors that could come into play. You can get all that make this orthe ascetic intolerance from stress and medications and so forth to So we haven't had to go down that path because most patients are getting better with the conservative treatment. Um, and then overall, you know, when we first started seeing patients, we did thank every test that we could think of that would be relevant for these patients. Um, and the majority of these tests CT scans CBC Um, pulmonary function tests come back normal, So it's important to realize that, um, over testing is something that's easily that can be done for this kind of unknown condition. We recommend judicious use of testing, especially as many of our patients are unsure of how their insurance is going to cover these things, because we don't want to to create another problem on top of another problem. And with that, I think I'll end for today. Um, I appreciate everyone's time here and thank you all to my Panelists, uh, for helping and being part of the team here and I'll turn it back over to the powers that be. Okay, thank you very much. I'd like to thank our speakers as well as you all for joining us today to discuss life after covid. Um, just a reminder that you can join us, uh, for upcoming Webinars By checking out our website right here and then finally, I'd like to just provide those remaining instructions. Um, if you'd like to claim credit after this webinar, please visit us at ce dot mail dot e d u backslash 0315 You'll need to log into the site. So if this is your first time visiting, you may need to create that account. After you've done this and you've logged in, you'll see that access code box. So you want to type in today's code right there? This will allow you to access your course, complete a short evaluation, and then gain access to that certificate. So once again, thank you for joining us today. And we hope you can join us for this upcoming covid 19 webinars
