Vermont Legislature SmartTranscripts:

[Sen. Virginia "Ginny" Lyons (Chair)]: Good morning. This is Senate Health and Welfare. It's Friday, March 27, and we're getting an introduction to the clinical and patient information around long COVID. We understand it's a real significant issue for patients and for providers. We're just trying to understand what it is and look to see what if anything can we do to improve outcomes for folks going forward. So thank you all for being here and we'll start out with Doctor. Mentzen. Thank you. Before we do that we're going to introduce ourselves to you so you know who's here. So go ahead. John Morley from Orleans District. John Benson from the Orange District. Ginny Lyons, Chittenden Southeast.

[Sen. Martine Larocque Gulick (Vice Chair)]: Martine Larocque Gulick, Burlington Area,

[Sen. Virginia "Ginny" Lyons (Chair)]: Chittenden Central District. And Ann Cummings, Washington,

[Dr. Katherine Menson]: right here.

[Sen. Virginia "Ginny" Lyons (Chair)]: So thank you all again for being here and we'll start with Doctor. Mentzen, thank you. Why don't you introduce yourself for the record and we'll listen.

[Dr. Katherine Menson]: Thank you so much. Yes, my name is Katherine Menson. I'm an assistant professor of pulmonology and critical care medicine at UVM. I did prepare some slides just for some background, but I'm happy just to kind of have a discussion as well. I'll

[Sen. Virginia "Ginny" Lyons (Chair)]: No, can she share to Yeah. So you can put your slides up and we'll be able to go through them with you.

[Dr. Katherine Menson]: Great. So I'll just start by saying I just don't have any disclosures. I just wanted to go over a quick review. I'm assuming you all are familiar with the content, but the definition of long COVID, has kind of been in flux since this was first identified in mid twenty twenty. There are a number of different timeline definitions. The CDC recognizes long COVID as being after greater than four weeks after acute illness. But the WHO and the National Academy of Sciences, Engineering and Medicine recognize kind of a longer timeframe accounting for the fact that some patients do seek some recovery kind of in that sub acute period. But really important to emphasize that it really symptoms can be kind of regardless of how acute the initial infection was, that it has to have some impact on everyday functioning, can't be explained by an alternative diagnosis and for many patients have a kind of a relapsing and remitting course. One of the hallmark features is post exertional malaise. And I think probably one of the things that participants struggle with the most, or I'm sorry, patients struggle with the most. And kind of what goes unrecognized as we think of physical activity as contributing to PEM. But a big piece of this is cognitive or emotional efforts as well. So just like getting to doctor's appointments, working, standing for long periods of time, all of those things can contribute. The timeline, I just want to emphasize because a lot of people think, I wasn't that sick or they're told by their family or their doctors that they weren't that sick at the beginning. But we know that most people who struggle with long COVID had pretty mild to moderate infections at the beginning of their illness. And that the fluctuation of post exertional malaise can present either immediately, but for most patients it lags. It can be hours to days after their exertion. So it's kind of hard to think about the association. And then it can often last a few days, although some patients report that it lasts much longer than that. You also probably appreciate that there's a lot of different symptoms that go into long COVID. This was kind of an early paper that identified three main clusters. There are people kind of who have more of a GI or head, ear, nose, eyes and throat symptoms. And then we have more of the cardiac and neuropsychiatric problems that people have. And then there are a lot of like extra pulmonary, extra cardiac manifestations that we hear of as well. And that with these clusters, the timeframe seems to change. So like in cluster one, symptoms did seem to get better over time, but in these kind of predominant other two clusters that we hear about more frequently, there's this period of recovery and then return of symptoms after that initial infection.

[Sen. Virginia "Ginny" Lyons (Chair)]: Senator Ginny Lyons. Yeah. Do you mind being interrupted?

[Dr. Katherine Menson]: Not at all. Not at all.

[Sen. Virginia "Ginny" Lyons (Chair)]: So Senator Gulick has a question for you. Please.

[Dr. Katherine Menson]: Medicine in the last slide I saw COVID toe is one of the symptoms. What, tell me what that is? Yeah, so I don't know if you remember way back in the beginning, this manifestation I think has not been seen in kind of the newer variants, but with the alpha variant, chilled lanes was a common presentation. So people would develop discolored toes outside of temperature. That again, is something that we haven't seen since early, early on, but it was dubbed COVID tone. It was one of the like early diagnostic features for people who are sick early in 2020.

[Sen. Virginia "Ginny" Lyons (Chair)]: Okay, thank you.

[Dr. Katherine Menson]: Yeah. So just and I think the point to emphasize that there's just so many different symptoms that can present with long COVID, which gets a little bit to the part of the difficulty of treating. A little bit on the pathophysiology, there's a number of potential mechanisms. And I think, again, why we see so many presentations in terms of symptoms, and why some treatments work for some patients and not others. But that clustering, or kind of phenotyping of the disease is really important to figuring out how we treat the disease. And so probably what contributes to the clusters and all the different kinds of symptoms types is that there's probably a number of different ways that this contributes to patients having symptoms. So we think it could be immune dysregulation, persistent inflammation, persistent viral particles, we know that there's an association I'll get into this in a little bit of reactivation of things like Epstein Barr virus, which classically causes mononucleosis, which if you recall, is a virus that can really take usually younger people out for long periods of time due to fatigue, autonomic dysfunction, mitochondrial dysfunction. So it just did hit home that there's just so many different potential pathophysiologic mechanisms that it gets really complicated to treat this disease as a whole. There's a great review article from New England Journal of Medicine talking about brain fog, which is another very, very common symptom for people what we term neurocognitive symptoms, which is that there's probably some inflammation happening at the blood brain barrier that causes problems with cognition, attention, communication skills. And I think you'll probably hear best, I think from some patient representatives you have today, but there seems to be a lot of overlap with a known entity called chronic fatigue syndrome, what was changed to be called myalgic encephalomyelitis. Many in the community you'll hear call it MECFS to recognize that it's actually a disease and not just a syndrome, which carries some negative connotation with it. But just to say that we've known about CFS for a number of years, We've known that it's been associated with kind of these different, sorry, my cursor is on the wrong side with a number of things that look familiar, including the first SARS CoV-one epidemic, not pandemic. But a lot of the same things just months of fatigue and reduced functioning compared to pre illness. PM is a classic hallmark feature on refreshing sleep. And then there can be these kind of additional symptoms that go on with that.

[Sen. Virginia "Ginny" Lyons (Chair)]: May I ask a question? Yeah, please. That's associated with, and then you've got female sex, but then major stress related event, is that something separate and different from the disease itself? So it's a death in the family something else?

[Dr. Katherine Menson]: Right, exactly. And the idea is that for many diseases there's this proposal of like a two hip hypothesis. So like just the infection itself may not have contributed to you developing something like long COVID. But if you had another instance, another trigger, it might have also we know there's a lot of stress plays a lot on the immune system. So there's a potential that with having both the virus and some type of triggering event on your immune system at the same time that it could contribute to MECFS.

[Sen. Virginia "Ginny" Lyons (Chair)]: Could it be like an autoimmune disease? So it's an underlying disorder that someone has that might contribute, or is it an external?

[Dr. Katherine Menson]: Yeah, potentially, and even the autoimmune disease itself for the treatment you get for an autoimmune disease. But it appears, you know, we really didn't have, first of all, a lot of recognition for MECFS and a lot of research to focus on this area. Now that we have so many patients struggling with long COVID, think it's come to the forefront. So a lot of this is just based on observation in kind of smaller trials, but I think it's much better understood that, again, there's probably something else that's attacking the immune system, which again, could be a stressful event, but could be another infection as well to contribute why some people just fully recover and some people don't.

[Sen. Virginia "Ginny" Lyons (Chair)]: Thank you. And

[Dr. Katherine Menson]: just to get to diagnosis, I want to be cognizant of other people's times. I think that I included this graphic just to be aware of the fact that there's so much to go over depending on how patients are presenting. I think this is why it's overwhelming for patients, number one, but also for medical communities because there's so much to address. But this was a really helpful guide for kind of managing long COVID in the primary care setting, when to escalate, when to refer, what things should be evaluated and ruled out, and then kind of a big piece of this article validation. And I think a lot of patients don't get that of hearing like this, how you're presenting and what you're presenting with, even though the testing is negative, is very consistent with long COVID. And I think that's really missing for this patient population. I'll skip through this just in the presence of time, but just a little bit of things we think about in terms of ruling out alternative causes. And then I think you had asked me Senator Lyons a little bit about treatment. So for a while, we were using kind of very small case cohort studies, observational studies. So just kind of seeing how patients did with certain interventions. There's the NIH, as you probably are aware, launched a big funding initiative called recover in 2023. Its focus was on kind of identifying treatments for different cohorts. And so you'll see they have different focuses based on kind of what people's predominant manifestation is. There's been a lot of advocacy from the patient community that these trials need to be efficient and running faster and equitable. And so I think there was some lag in the beginning, but I've seen that they've run more efficiently in the past couple years. To talk about some of the things that they've identified fatigue, and again, the post exertional malaise is one of the biggest ones that I think the hardest for patients to kind of navigate. But getting adequate either medical guidance, usually through rehabilitative specialists and pacing. The four Ps are planning, pacing, prioritizing and positioning. So really having patients thinking about how they're using their body for different activities. And then cognitive behavioral therapy has actually been found to be pretty effective in terms of helping with the fatigue manifestations of long COVID. I think you had also asked a little bit about some hyperbaric therapies as well. There have been a couple things looking at neurocognitive symptoms. This was one of the biggest, this was actually the first RECOVER trial that was published, RECOVER NEURO that found that three different online or sorry, three different cognitive training programs were not helpful in neuro symptoms of long COVID. CBT has been shown to show some potentially promising therapies and can be delivered online, which seems applicable to Vermonters. But I mentioned there are some studies that were observational or didn't include controls that have shown some promise. So hyperbaric therapy has shown to improve neurocognitive symptoms on kind of these smaller scale research trials. So this had less than 40 patients in each arm. It's kind of difficult to do shams on some of these interventions, but it did show potentially some promise.

[Sen. Virginia "Ginny" Lyons (Chair)]: So, Ginny, I understand that Dartmouth has a hyperbaric treatment protocol for folks, and they go over and they have treatment on a regular basis for a period of time. Then is UVM looking at that at all? How is it sugaring off? Is this something that offers significant promise? Because I know there's, I'm very familiar with people who have this disorder and disease, and if this offers promise, how can we do it, I guess, is my question. Is it efficacious at this point to say we should have a hyperbaric chamber, or do we not yet have the data?

[Dr. Katherine Menson]: I would say that we don't yet have the data. I'm completely speculating, but I believe that Dartmouth had a hyperbaric oxygen therapy before, not just for long COVID.

[Sen. Virginia "Ginny" Lyons (Chair)]: Yeah, obviously.

[Dr. Katherine Menson]: And because the one treatment is used for is the bends are kind of from scuba diving injuries. And so that is kind of a rare treatment modality to have, especially in a kind of more rural location. So my guess is they were able to use that because they already had one. I'm not positive, though. I would have to

[Sen. Virginia "Ginny" Lyons (Chair)]: Okay. Yeah. We we we might invite them in just to understand what what it is at some point, but no. Thank you for that.

[Dr. Katherine Menson]: Yeah, you're welcome. I'm aware of the time, so I wanted I was just gonna pause and see if you want I provided my slides, so if you want me to stop here to give time for everyone else, that's fine. But I can keep going.

[Sen. Virginia "Ginny" Lyons (Chair)]: It looks like it's a continuation of diagnosis and treatment, and so I think you've got a lot of details here. We'll scroll through those ourselves and come back with questions if we have

[Dr. Katherine Menson]: them. Sounds good.

[Sen. Virginia "Ginny" Lyons (Chair)]: Why close don't there, but we'll let the committee ask you questions at this point. Any questions for the doctor? You've given us a lot of good information. I greatly appreciate it. The basic medical data is very important. Thank you. Thank you. Thanks. More questions so we can, and Doctor. Rask is not here. We invited him in, but I think Doctor. Menson is covering the landscape for us on that one. We do have Elan Roy. Thank you for being here. Do I say it properly? Is it Elan?

[Island Roy]: It's pronounced island. You think of island in the ocean, but no d. My mother is quite creative.

[Sen. Virginia "Ginny" Lyons (Chair)]: It's a beautiful name.

[Island Roy]: Thank you. Thank you.

[Sen. Virginia "Ginny" Lyons (Chair)]: Isla, thank you for being here. And we have some written testimony for you. So why don't you, your slides, are you wanting to put those up and share your screen?

[Island Roy]: I think what I'm going to do is, I sent you the written testimony and I'm basically going to share that as well. I just wanted to leave it for you as something to reflect on after I speak. In terms of the slides, again, I think that's something that might speak for itself and I will at least share a little bit about why I included them as I go on in my testimony.

[Sen. Virginia "Ginny" Lyons (Chair)]: Go right ahead, thank you.

[Island Roy]: Very good. So first of all, you so much for the opportunity to speak today. This is such a prevalent disease. It's prevalent both in Vermont but in all age groups and I know families who have children with long COVID. Me tell you a little bit about myself and why I want to speak for the children, the families as well. You know, my name is Island Roy. I am a mother. I'm a grandmother. I raised my son here in Vermont, and I have a three year old grandchild. I'm also a Vermont educator, a licensed teacher with thirty years of experience, including seventeen years with Head Start, which is a federally funded early childhood program. I served as both a classroom teacher and later as a supervisor overseeing multiple classrooms during the early pandemic years. And prior to that, I've also been a state certified trainer for early educators, a teach mentor, helping younger teachers get established, get their licenses. And I spent many, many years providing home visiting and social support services, mostly for families with less resources and families much like the one I grew up in. I taught up until and supervised up until 2022 when I became disabled with long COVID and I'll share a little bit about that. Whereas once just a few years ago, I was teaching whole classrooms of three year olds. I am now so greatly disabled I can barely play with my three year old granddaughter. She lives ten minutes away and comes over for an hour, maybe an hour and a half and I have to rest all day before and after just to be able to sit up and play with her on the floor. I can't walk easily, I have a power wheelchair, I can't lift her. My life has changed so greatly. So I want to share with you a little bit about how this came to be but also my expertise in early childhood programs because I want to speak to that issue as well. So in the first two years of the pandemic, I stepped up. I was kind of in a hybrid position at that point working for Head Start. I was doing a lot of home visiting and also visiting multiple classrooms, infants, toddlers and preschoolers again, at risk children in Burlington area. I actually made the decision to leave that position and open a new classroom right in the 2020 because I knew we were short on teachers and care for the kids, I care for the families. I wanted them to have a good educational experience despite the challenges with the new pandemic. It was incredibly difficult if you can imagine us being fully masked and parents not allowed in the room of the toddler classroom I had, we had five different home languages and they're all two years old, one years old, they're just learning language. So they were quite stressed to be held handed over a gate into a classroom where they didn't know us. But I'll tell you, our hearts and souls were in it. We gave them the best education we could And we also followed very strict and clear public health guidance that was provided to us from Head Start. We implemented strong mitigation strategies. So for example, masking and they did research on what are the best masks for us to wear. And we gently but supportively taught children to mask. It's similar to teaching toilet training truthfully. It's a gentle touch, it's not a forceful touch. Had a policy that allowed no symptoms of any illness in the building, staff or children. We would send them home often. We would send them home with tests. We would provide the families with guidance if they did have some sort of sickness. And I will say in that classroom that whole year before we even had one vaccine, no children and no staff got infected in my classroom that year. It was a lot of work but it was joyful work and it still lives in my heart. It also showed me that prevention can work. It's not perfect, but there are things that can be done. We changed the ventilation, MERV 13, we opened the windows. We were just very mindful. By 2022, I was promoted to supervisor. I don't know why I thought that would be slightly easier, but it was actually more challenging as we were incredibly short staffed in those periods of time. We had high turnover. We had many new employees who had not yet earned significant or enough sick leave to really address the fact that the reality is as a teacher in any age, when you open up in the fall, that's when illnesses start spreading, right? You're in an enclosed area, close contact and what was happening with the staff I supervised is when they became ill, they had to borrow from future time off that they hadn't yet earned yet. Or I guess continue working, like we weren't allowing COVID positive people in there but it was starting to become a pressure that we couldn't solve. So over time our policies that were initially quite strict and successful at reducing transmission, they changed. The protections that had been in place including for example, additional sick leave given to educators. We had two extra weeks because if you got COVID it was really clear, we want you home. Please stay home for five days. We don't need you at school, we'll take care of it. But that started by 2022, that sick leave and that clear public health guidance about prevention basically started being reduced and disappeared. We were told that COVID was no longer a significant risk and definitely not for children. At the same time, some of these protections started moving away. Also things like masking, they dropped the mask mandate in 2022. I was fully masked until that fall. Access to testing became more challenging and the clear guidance around transmission disappeared. So in practice what this meant is that educators and children were becoming increasingly exposed and sick as this period of time went on. I wanna point out right now because this is close to my heart and is my profession. Current childcare guidelines in Vermont allow COVID-nineteen positive children and staff to be in school. The criteria basically says if you have COVID and a fever with significant behavior change, then you must stay home. If you have COVID and you're significantly ill with it, then you must stay home. But if you don't, well, you can come to school. And I just wanna put a strong plug for you to kind of look at the research. It's very, in 2022, the Journal of the American Medical Association, COVID is not rare, long COVID is not rare in the pediatric population. It's as prevalent as asthma at this point. So our policies were not, know, there was a lag in the public health guidance and our policies changed. Truthfully, I don't believe it was safe for them to change to that degree. I back to 2022, I reopened classrooms, training was provided. But one thing I wanna point out is as an early childhood educator, every single year of my thirty years teaching, we are mandated to have something called blood borne pathogen training. That's where we're trained to recognize the public health needs that children staff can have, for example, HIV, hepatitis C, are in your blood. If children get cut and you're not wearing protective gear, your gloves, what have you, you risk spreading that pathogen. So early educators were all taught about how to protect ourselves and other people. What never happened with the COVID-nineteen pandemic, which I believe is ongoing, we never did airborne pathogen trainings. It was just all of the sudden 2022, it was just kind of dropped as a topic. And I'll be honest, I believed it like everybody did. I had been mandated to get three vaccines. I was in perfect health. I was rowing daily. I didn't believe I had anything to risk from a COVID infection. And so I went about my business. So I got my one and only COVID infection in the late summer, 2022. My initial illness, as Doctor. Menson referred to, was like many, quite mild. I was over it in a week. And again, public health messaging and even my doctor told me nothing to worry about. You're going to be fine. You have no health conditions. You're fully vaccinated, so on and so forth. And I did think I was fine. I went back to work and began that process of opening multiple infant toddler and preschool classrooms. Though I thought I recovered within weeks, my heart rate began spiking, really just normal activities, having a conversation, running a meeting, joining in on a classroom visit, it was spiking. And I also began experiencing recurring flu like symptoms and fatigue. I just kept thinking like, what am I getting? And as the weeks turned to months, know, I became progressively more ill. At the same time, our Head Start program was facing severe staffing We opened up the classroom one year, one site, fully staffed we would have had seven teachers but we only had three, three ready to go. And so of course I'm a licensed teacher, We need to keep the ratios, the children safe. I stepped into the classroom quite often to cover just as I was experiencing the beginning symptoms of long COVID. Teachers around me were getting sick, burying through as I told you their limited sick time, especially newer staff who hadn't accrued time and those that had children at home who of course were also getting sick. So in that period of time, August through December, I tried my best to seek out medical care. I could tell something was seriously wrong. My symptoms were repeatedly dismissed. My primary doctor told me I had anxiety and that I should just ignore my smartwatch which was sending me alerts that there was a problem. After a few months of this without resolution, I was losing weight and I asked my doctor to refer me to the long COVID clinic at UVM and he refused. I should say he delayed. He basically, no, no, let's test you for some other things, Lyme disease, mono. Turns out I had both of those as well. And in this delay, as I dropped to eighty seven pounds and began looking for a new doctor, which let me tell you is incredibly difficult to find a brand new doctor when you're severely ill or anytime. Basically by the time I got diagnosed with long COVID, I was eighty seven pounds with daily chest pain. Finally found a doctor who was willing to take me seriously and literally brought in with me a copy of the Family Medical Leave Act because I had been trying to figure out a way to work through this but I was struggling greatly. So at that point you know, I'd lost a dangerous amount of weight. I was profoundly unwell and I did go on leave. I had hoped to be on partial leave and just have reduced hours. But the process of getting accommodations for that was very difficult especially while so sick. I knew that I needed formal accommodations but I truthfully I faced resistance from work. You know, was very confusing how to handle this new situation that I was told was not common. It wasn't a real thing. So I do wanna put in a plug for a program that was incredibly helpful. The retain program through the Department of Labor definitely helped me through the accommodation process, helped me access medical care because again, eventually I was diagnosed with anorexia. I got so thin and that had nothing to do with a behavioral problem. It attacked my GI system. I do believe retain not only helped me access multiple systems that may have even saved my life. So please fund that program if you can. I went on leave, took a four month leave and by the spring I was walking 10,000 steps a day again. I had gotten into the long COVID clinic finally, finally got a referral. I will point out they would not accept a self referral to that clinic. If you did not have a doctor who believed you had long COVID, you were not gonna get in there. My gynecologist truthfully got me in there, believe it or not. But went through the program, started some PT, was walking 10,000 steps a day, had no symptoms. I really thought I was recovering, tried to get back to work. During that process I was given physical therapy guidance that was not appropriate for my condition. Despite my reports of post exertional malaise, which you've heard of, I was encouraged to increase activity based on the assumption that stress was my primary trigger for my flare of symptoms. And this caused me a significant relapse at a moment when I was attempting to return to work. My condition is now consistent with and I am diagnosed with myalgic encephalomyelitis. And Doctor. Benson described that to you and I just want to say this post exertional malaise is such a lame term for the agony we feel. Your head is swollen, everything hurts, you can't even listen to people talking. I can't eat food and it can last for days. There are some of us that are in their bed for months and years. So it's quite serious. So even small amounts of activity can cause significant and lasting worsening of symptoms. So I guess because this condition is not widely recognized or physicians and physical therapists do not have the training on it, I was given this inappropriate guidance and I got significantly worse and truthfully was discharged from the program. Right at that same time, my workplace pushed back on my accommodations which were written. And ultimately I lost my job and my health insurance during a severe health crisis. The stress of that process really made me sick. I was 85, having daily chest pain and I had no health insurance. I didn't have enough notice. I'm not a married woman. I don't have anyone else to get me magically insured. So the stress of this sudden job loss, the necessity of navigating long term disability to feed myself, social security disability insurance to try and access my workplace long term disability and emergency Medicaid to save my life while I was cognitively impaired, physically debilitated and severely sick. It really it made me so much worse. I think I would have been a different person had I had a different set of experiences in that early part. So I wanna emphasize this clearly fighting for medical care, recognition, workplace accommodations, financial support while severely ill causes lasting harm to my health. At the point, the worst point of my illness, I was expected to coordinate my own care, secure documentation, apply for leave and pursue disability benefits. Know, and as you can see, I am college educated. I want to say if this process is difficult for me with my professional background and ability to advocate for myself, it really has kept me up at night to imagine how this is feeling for people with less resources than me. It's not an individual failure, it's not a failure of any one person, it was a systems failure. So I want to share and thank you for bearing with me a few key recommendations. First, we must recognize COVID-nineteen is an ongoing public health and workplace hazard. This includes improving ventilation, restoring access to masks and accessible testing and ensuring that people who are actively infected do not have to return to work, do not have to be at school, that there's somehow a way to allow them to stay home when sick so the classrooms can remain open but healthier. Second, we need to improve access to diagnosis and care and this includes training providers to recognize and appropriately treat long COVID and reduce barriers to specialty care. I mean, had cardiologists telling me to not think about it. It'll probably go away. I had to wait a whole year to see that person again and say, yeah, no, it hasn't gone away. You know, people that just doctors who didn't believe me and told me I needed an anti depressant. I also want to pause here and point out in addition to the version of long COVID I have, there are others in our community that have, let's say, myalgic encephalomyelitis or the vaccine injured. There are some who are got injured seriously from the vaccines and I am not anti vaccine. What I want is for there to be training for medical providers to open their arms, accept these patients and give them evidence based care because they need it. They're quite sick. So third, we must strengthen workplace protections. Employees need clear pathways to accommodation and medical leave given that diagnosis can take a lot of time being a diagnosis primarily of exclusion. There are no tests that prove that you have long COVID in one blood test. So you shouldn't lose your job or income just while you're in the first few months of trying to figure out what's going on. Some of us are able to work with accommodations and that should be possible. We must ensure long term support for those who are affected financially, medically and functionally. Most of us with long COVID struggle to access disability benefits. Many take years of denials and appeals. How are they surviving? People are homeless. I've heard of people living with their 84 year old parents who support them as a caregiver now, literally bringing them food. I'm one of the lucky ones and I do receive both long term disability from my workplace policy and SSDI, But the process of getting it made me permanently ill. It was so exhausting at a time when I should have been resting. I live on disability income and this disease is wildly expensive. My insurance which is Medicare is $663 a month and I spend hundreds of dollars a month in medical expenses including multiple trips to Florida each year where I truthfully I needed to go to get diagnosed with one of my conditions. And I'm also accessing treatment through a clinical trial using monoclonal antibody. I'm so sick that I'm desperate. I'll do anything to feel better, you know. So any effective response must include patients in the design of policies and programs because without lived experience guiding implementation, systems are gonna miss the people they are intended to serve. National public health efforts including work from the COVID-nineteen long hauler advocacy project, a group that I am a member of, a patient led group, has outlined the need for coordinated clinician education, public health guidance and infrastructure to address long COVID. Vermont has a wonderful opportunity to align with these efforts and respond more effectively. I believe we can be a leader in this. We've done it before in other areas. So I want to end by saying, I don't look sick. If you see me on a good day, you think I'm fine, but I'm really not fine. I'm gonna have to lie down for the rest of the day. I plan my entire day about whether or not I can sit up, whether I can think clearly, whether I'll crash if I do too much. Many days I can't sit up right long enough in my wheelchair to make a meal and I certainly can't shower in the same day as I cook a meal, even sitting in my wheelchair I'm too exhausted. There are days I can't follow a conversation and I'm extremely isolated because I must avoid reinfection with COVID. Reinfections the research show greatly increase our symptoms and also add new health conditions. No one talks about prevention around me, no one wears a mask. And not only that, I'm kind of targeted for wearing a mask. There's a lot of stigma and I'm just trying to protect myself. I'm called some very inappropriate insults, you know if I post a photo with me in a mask. So it's hard for people to understand. On the outside I look like the same person, but I'm not. I gotta tell you, you know, I'm a granddaughter, a grandmother. I want my granddaughter who is in school right now to grow up healthy in her school. I don't want to risk her getting more on COVID. I want to be able to play with her outside and not be stuck in my wheelchair, you know, if I'm ever going to be able to walk again. And I also want to say that, you know, as an early educator working in federally funded programs, I do know what safe responsive systems look like. We did build them over the early pandemic. At that point too soon, we were told it's over, but it really isn't. It's still prevalent. It's as common as asthma, as common as diabetes in the adult population and children, educators, hospital personnel, they're still being exposed every single day. What happened to me wasn't just because I got sick and I'm just a flawed human being, The systems around me didn't recognize what's happening and didn't respond in time. So I really wanna thank you for listening. I'm a little bit long winded, but I greatly thank you for taking this up. So important It's to us and just hearing this day is going to create hope for many of us that are listening in right now. Thank you.

[Sen. Virginia "Ginny" Lyons (Chair)]: Silence, thank you so much. The information that you have brought us is very definitely going to inform our decisions legislatively. There's a lot that you've handed to us that we can work with, with our Department of Health, with our Department of Aging and Independent Living. I mean, talking about the eligibility and the application process for disability is significant. And then the education for our medical providers is also significant. Greatly appreciate what you said and I completely understand. I hope that we haven't tired you out so much that it takes two days to recover. I know what you're saying. I see it with a family member as well. So, thank you. We won't ask questions at this time. I understand you're going to send in your testimony and we have all those recommendations that are useful, including the program at DOL that seem to be significant for you. So thank you. I can't thank you enough. And I know that you have a terrific support group and I suspect that Christine is also in that support group. But it's difficult for you to advocate for yourselves when it takes two or three days to recover from presenting as you have. Thank you. Greatly appreciate it. And Christine, welcome.

[Christine (last name not stated)]: Hi, everybody. Hi. Thank you for having me. It's interesting to hear Island's take because there's so much overlap in what we believe would be the most helpful things to start with in kind of preventing long COVID. And so what I wrote, I will read it, I really want to bring you all through kind of what it feels like, what the feeling is being so sick. Because it is a very hard thing to try to understand. You know, it's much like childbirth in that way, where you don't get it until you get it, until you've done it. And you're like, oh,

[Sen. Virginia "Ginny" Lyons (Chair)]: that's

[Christine (last name not stated)]: so

[Sen. Virginia "Ginny" Lyons (Chair)]: not what I thought it was. You know? Some us get it.

[Christine (last name not stated)]: Yeah, exactly.

[Sen. Virginia "Ginny" Lyons (Chair)]: But it better help you.

[Christine (last name not stated)]: Before 2020, I was living a really good life. I had a very successful business. I was raising a four year old and a one year old, both healthy children, happily married. I had a very rich life, lots of dinner parties. I was an avid rock climber. I was in incredible shape. I played guitar. I had a lot of creative hobbies. I spent a lot of time hiking, doing art projects with my children, had a lot of friends, felt really strong and light in my body. Now I do not remember what health feels like. I have no memory of it in my body, no matter how hard I try to recall that feeling. My body is noisy now, noisy with discomfort so constant I almost accept it as normal. This is a loss that healthy people cannot possibly understand, a loss in a raging sea of loss that chronic illness patients swim in day after day. We never reach shore. We do not get a break. We are reminded of our loss every single day. In fact, as I type this, I have tubes pumping other people's blood plasma into needles in my stomach, plasma that allows me to fight infections because COVID broke my immune system. I got sick before we knew what COVID was, before anyone spoke of it publicly. I became symptomatic on 01/17/2020. I had a young client come in from a trip in Nepal followed by a ski trip in Washington State. She sat in my chair coughing and sniffling, told me, I think I picked up a cold on I remember wondering, how am I going to do with a week with no work? How am I going to pay my mortgage? What am I going to do with no day care for a week? This is going to be a messy couple of weeks. Little did I know I would never recover. Six years later, I spend most of my day in bed or on a couch. The progression has been up and down, but overall a downward trajectory. I pared down my client load several times a year, only when I was willing to face the reality that it was simply too hard to continue working the way I was. I built a space to work from home to ease things on my body, only to lose that too. Eventually illness one and in 2024, I put my tools down. The skeleton of my career constantly reminds me of one of the many freedoms I've lost. In the first few years of my long COVID, I was able to work part time and exercise. My main symptoms were these vibrations that felt like I was swallowing a phone or as plugged into a wall. I'd wake up in the middle of the night with adrenaline coursing my veins, ready to run out of my house or fight someone. I had hallucinations, voices telling me to kill myself, weird rashes. I lost 30 pounds, had a swollen pancreas, was fainting daily, and had painful migraines. This isn't everything. I had over 125 symptoms in the early days, But no one believed me that there was something wrong. When I asked my doctor in April 2020 if I could have had this new virus, she laughed at me and told me if I had had it, I'd be dead. Every doctor said I needed Valium, that this was just postpartum anxiety. I should get used to it. A gallstone is what finally got me the information I needed. A doctor at UVM recommended removing my gallbladder and I went for a second opinion because that's what you do before you snatch an organ out. And the gallbladder surgeon at Dartmouth said, I could take your gallbladder, but I don't think it's going help you. I think you have this new thing called long COVID. Some people are getting this virus. Allow me to walk you through a current day. I wake up to an alarm at 6AM. Christie, your

[Sen. Virginia "Ginny" Lyons (Chair)]: your Zoom is picking up on us, and I'm wondering if you turn your video off, it might help with the sound coming through.

[Christine (last name not stated)]: Sure. Okay. Can you hear me better?

[Sen. Virginia "Ginny" Lyons (Chair)]: Yes. Yes, please. That's good.

[Christine (last name not stated)]: Okay. Thank you so much. So allow me to walk you through a current day. I wake to an alarm at 6AM in an attempt to maintain normalcy. I try to get out of my bed and be with my children. And I push through pain and nausea. And it usually takes me about forty five minutes to get up and out of bed into the kitchen. As I'm pushing through all of this, I'm trying to be present for my children and ask them what they're excited for in their school day ahead. But some mornings I just can't. The fatigue is heavy and the nausea is unrelenting. Sleep in this illness is not refreshing. I wake up feeling no better than I did the day before if I'm lucky. Some of my joints, a rotating daily selection, feel hot and creaky. My muscles are sore in that flu like way. When I make it to the kitchen, I'm dizzy and I feel sick to my stomach. My kids are asking questions. The noise is overwhelming to my brain. Sometimes I'll wear earplugs. Otherwise, I'm asking for lower voices. My family already knows to keep the lights low because the bright ones hurt. I hug and kiss my kids as my husband Jake helps them get downstairs. I cannot do the stairs. Stairs are energy vampires, turns out. So are showers. I grab a coffee, swallow my fistful of pills lying on the couch while Jake cleans the kitchen, takes care of the dogs, cleans up the breakfast, asks if I didn't need anything. I start my daily phone calls to Aetna to fight for coverage of medications, to check on the status of appeal denials. I call doctors for appointments, check lab work that usually comes back normal and check my online support groups for any news. I'm constantly hoping that someone will post something about a cure or something helpful. I stare at the window, I watch the birds, but I'm getting tired. So around 10AM, I head back to bed where I'm going to spend the next six hours or so. I have weak connective tissue, so holding my head up feels like an Olympic sport. I scroll through newly published papers on my illness, but reading them is tiring, so I close my eyes. Around noon, I can start to tolerate some food, plain toast, a slice of turkey, maybe some apple. I have to be careful about what I eat and also around new medications because I now get anaphylaxis. Label reading is a must. Eating makes my blood pool in my stomach so much that I feel sick, so I have to lay down. My feet and legs turn purplish blue. They both feel numb and they're burning. Jake checks on me, offers me food, refills for my water bottle, tells me about his day at work. I talk to my friends who also have long COVID, so I feel less alone. Thank God for other sick people because being in this Groundhog Day alone would be so, so, so terrible. At 3PM, the kids get off the bus, I rush, they rush into my room and give me a hug, we talk about their day. And at 4PM, it is like my moment to shine. I get out of bed and I cook dinner on most days. I try to cook each night because I love cooking and it makes me feel like a real human being with some purpose. It doesn't happen every night. I sit at the counter and chop and move the stool to the stove and cook. And then I have to lay down on the couch before we can eat. Again, eating makes me ill. So I eat, lay on the couch, spend the rest of the evening on the couch. This is an average day. This is far from my worst. One of the factors in my worsening by far the most impactful has been reinfection. My second COVID infection put a graduation cap on my existing long COVID, sliding the tassel to the other side as it developed into full blown MECFS, a disease with the lowest quality of life of any illness. On my worst days, I cannot speak, I cannot walk. The muscles behind my lung function are like sleepy puppet masters. It feels like the road to death. And sometimes I think death would be easier than this. But I can't. I can't leave my kids. In these crashes, I feel like a broken machine. Where's the energy? Why is this thing not turning on? I desire a reboot or a slap on the side, something to get things going again. On these days, Jake carries me to the bathroom and reminds me to drink water because I have no drive to do the things that keep me alive. Yet I'm considered mild. I'm very emotional writing this. I want to scream, but that would take too much energy and could harm me. Imagine an illness where self expression can hurt you. It's just cruel. This illness doesn't just cause suffering for me. Tentacles out. It's colored our life as a family, my life as an individual, my role in my community, my marriage and my friendships. Nothing goes untouched. The pain and suffering is a daily walk through the jaws of hell. My life, as with anyone else with chronic illness, has been heavily filtered. Just a few people have stayed around. This life is deeply lonely. We miss out on so much. If we do anything exciting as a family, it's Jake and the kids doing it while I'm staying home and cheering from afar. It feels like I've lost so much, like I've been shot into space, like I'm not even here on Earth. Last Thanksgiving, I stayed on the couch with friends coming by to feed me and check on me while Jake took the kids to his family's home in Connecticut. I've missed weddings, funerals, family gatherings, trips. There are so many photo booth strips of my family and I'm not in them. It feels like I'm disappearing. And I know I'm not the only one who feels this way. Everyone I know who's sick feels like they're disappearing, like they just don't exist anymore. If you look at my family, you think Jake was a single father. It's an often overlooked part of chronic illness is the cost on caregivers. The extra weight carried is enormous, yet there's no support for them. Jake works full time, cleans, does the laundry, takes me to all of my appointments and is the primary caretaker for our children. I've had to work hard to find supports for my kids. They're a little hard to ache with the fear that they could lose their mother more. And I say more because so much of me has already been lost. They fight the battle between being taunted at school for wearing a mask and risking bringing COVID home to me. COVID could disable me further and it could cause long COVID in my children. My daughter already has a mild form of long COVID and I do not want her to worsen. Her symptoms involve temperature sensitivities, trouble breathing, and new food and chemical allergies. When I think of measures that could help, I think immediately of clean air in schools and public spaces, such as using far UVC light. A recent randomized controlled trial found that air purifiers cut school absenteeism by twelve and a half percent. Long COVID has become the number one pediatric chronic illness with a higher rate of incidence than asthma. We should be protecting our children. I think of free COVID tests, workplace and school supports that allow people to stay home when they're sick, and clear messaging sent to doctors' offices on identifying long COVID. Rhythm, spelled r t h m, a virtual care clinic focused on infection associated chronic conditions, has published a long COVID guide for patients and doctors alike. Many people are waiting around when they could be trying some over the counter medications and getting some level of benefit. The core team at Mount Sinai is holding teachings for doctors so that they learn the condition is real and not psychosomatic. I can cut this short. I realize it's 10:00 and we need and everything needs to end. Just let me know if would you like me to I can stop.

[Sen. Virginia "Ginny" Lyons (Chair)]: Go right ahead and get get to your ending. You are reinforcing what we have heard from Island as a different perspective because you've got a family and kids at home. That is an added challenge. Understood completely.

[Christine (last name not stated)]: Thank you. I'm not a doctor but I've been able to help countless people figure out where to focus on their illness, what to read about, what over the counter medications they can discuss with their doctor, what testing request. I cannot tell you how often I receive messages expressing gratitude for helping to light the way for them and their doctor. Although I am always happy to help, this should not fall to a disabled hairstylist to do. I wish we had a long COVID clinic in Vermont, a place where people can receive a diagnosis, access basic treatments and be referred to specialists, a place where doctors can gain knowledge around neuroimmune diseases. I know UVM had a version, but I'm talking about a legitimate clinic. Why clinics have closed when this illness is trending upward, not down makes no sense to me. All in all, we are lonely. We have been mostly forgotten. I still meet people who don't know what long COVID is. I still hear doctors who don't believe in it at all. We are craving support and visibility. We are a group of people full of ambitions and dreams stuck in bodies that do not work. We want nothing more than to be amongst the living. I thank you for hearing us and only hope this helps to breed understanding and support for our community. Thank you very much for your time and energy today.

[Sen. Virginia "Ginny" Lyons (Chair)]: Christine, I can't thank you for your time and your limited energy. Totally understood. Thank you. And again, the suggestions that you've made are extremely helpful to us. Some of us have known about long COVID for a while, but it continues to emerge in the real world and it's difficult, as I said before, for you folks to advocate So for we're picking it up a little bit and we'd like to do what we can to make your lives better. Difficult. So appreciate your being here. So I know the rest of the day is gonna be a day of rest. And doctor, thank you for being here. So there was a comment about, I wish we had a long COVID clinic and UVM has one, but can you characterize it a little bit? What more might be needed to make it a larger clinic? We can't legislate that necessarily, but we can shine a light on the need.

[Dr. Katherine Menson]: Yeah, I can speak to our recovery program. So late in 2020, we came together with a number of different experts, but I will say it was primarily led by the vice chairs of family medicine and internal medicine to try to identify the best pathway. We were seeing that we knew that there were validated measures to treat patients and they're still the ones we use today, although again, like adapted. But rather than waiting for kind of specialist evaluation, identifying that the diagnosis could be made in the medical home, and then referred to an adequate rehabilitation therapist who could help depending on the symptom presentation. So that was the model we developed at UVM. We did a lot of I'll say education both with AHEC, Grand Rounds, different community hospitals as well and shared our protocols throughout Vermont and Upstate New York. I think that with any change in, first of all, any kind of new disease and any change in practice, just I think the literature says takes ten to fifteen years to really become ingrained. And I also think that there's a lack of interest for medical professionals to become educated in this disease, which is where the problem really lies. And I mean, I say that in that there's a lot of stressors in the medical community. And so I don't think it's necessarily out of a place of ill intent. But I think that just hearing the testimony you say and hearing what I've heard from patients, that's a big piece of the patient experience. I'm not sure if I'm

[Sen. Virginia "Ginny" Lyons (Chair)]: This is great. I think that's good. We're getting to the end of the time that we have, but we will come back to this and obviously what we've heard is given some very specific good suggestions and recommendations for us to consider as we talk with our Department of Health or with AHPAC, Department of Labor, our Medicaid folks and others. Thank you. Each of you has contributed greatly to our knowledge. Appreciate it a good deal.

[Island Roy]: Thank you so much for having us.

[Sen. Virginia "Ginny" Lyons (Chair)]: Oh, good. Joe, I know where the support group is. Good luck with your support work together and take care of each other, and we'll try to do what we can do at this level. Thank you so much.

[Dr. Katherine Menson]: Thank you.

[Sen. Virginia "Ginny" Lyons (Chair)]: Alright. So we're gonna take a five minute break. We need it after that. That was really That was Yeah. Didn't realize that Oh, yeah.