Unraveling Fatigue: Exploring ME/CFS, and Long COVID (Ep 144)

Transcripts are auto-generated and may contain errors

Isabel Ramirez-Burnett: [00:00:00] Nausea and dizziness are more of the ones that patients get scared from, especially the dizziness. And if it goes for a week or two, it's even more prevalent that patients will discontinue. And also the pain effects seem to be greater when it's used, you know, consistently rather than that initial phase.

Dr. Linda Bluestein: Welcome back every bendy body to the Bendy Bodies Podcast with your host and founder, Dr. Linda Bluestein, the Hypermobility md. I'm really excited to bring to you today Isabel Ramirez Burnett. She is the CEO of Renegade Research. A patient led, decentralized non-profit focusing on research. Clinical education and practical advice around complex [00:01:00] multi-system chronic conditions such as M-E-C-F-S and long covid.

Isabel is also the project director for their largest to date research project remission biome. She's a systems engineer and board certified health coach who started her career in the pharmaceutical and medical devices industry. She has been living with me CFS for 43 years, which derailed her intentions to become a doctor.

But her own illness and passion for science has led her to work across multiple health related disciplines and companies. I'm really excited to have this conversation today because me CFS is such a poorly understood condition and so frequently missed. It affects so many people that have hypermobility and related conditions, so this is going to be an important conversation.

As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Stick around until the very end so you don't miss any of our special hypermobility hacks. Here we go.

Okay, we are here with Isabel Ramirez. Burnett, [00:02:00] and I'm so excited to chat with you. Our, I think our paths have crossed a number of different times in some different places, but I think this is the first time I've gotten to actually really chat with you. 

Isabel Ramirez-Burnett: Yes. We have, uh, crossed path in the IDS world, uh, before for sure.

Dr. Linda Bluestein: Yeah. Wonderful, wonderful. So, can you share with us how ECFS has impacted your daily life, your relationships, your ability to work and pro pursue hobbies and how you got into this space in the first place? 

Isabel Ramirez-Burnett: Ooh, that's, uh, uh, a loaded question. Yeah. I have had ECFS for 43 years, so it has impacted most of my life.

Um, and even, uh, before developing full fledged ECFS, there were actually, uh, signs and symptoms of EDS, um, that also impacted me. So I developed M-A-C-F-S at the age of seven, and that was wow after, um, having [00:03:00] shingles at the age of seven, um, after having chicken pox at the age of two. Um, so the impact, um, in my earlier years where I guess I could say less than they were as an adult, um, because I was very fortunate to grow up with, um, my grandmother who was incredibly knowledgeable about herbal treatments, who pursued, um, clinicians relentlessly and who also believed me.

Um, whenever I explained, you know, the symptoms that I had and what I could and could not do. Um, so that, um, she was able to modify my diet. She was able to, um, you know, get me on herbal supplements. She was, uh, able to seek care and not take no for an answer. Um, when I was [00:04:00] growing up, and I was also fortunate that in school, um, there was also a very open atmosphere of understanding any limitations.

So, for example, I had the same pe um, teacher from the third grade until the end of high school. Um, and when I told him that I couldn't shoot the basketball because I couldn't look up, um, he was perfectly fine and made accommodations for that when I couldn't run the mile. Um, he made accommodations for that and had me do other things.

So way before there were, you know, systems in place for that to happen. So I recognized that, you know, growing up my experience was very different than a lot of people, um, with this condition. Um, whether it is because of the lack of clinical care or because of the lack of understanding for family members, that's not something that I experienced growing up.

But with [00:05:00] that said, uh, there were definitely, you know, challenges it, the challenges in school, um, being able to, uh, keep up with my peers, being able to do things of week and on weekends after, you know, having M-E-C-F-S symptoms and having to deal with those challenges for the entire week at, at full force had definitely an impact.

Um, and then at the age of 12, I had measles and I was hospitalized for a month. Um, nearly died. Um, and then when I finally, uh, got back home, I felt down the stairs. Um, and I think that's when a lot of the hypermobility issues, uh, became much worse. Um, you know, the, the neck, um, was terrible, the back pain, et cetera.

So, but, but again, from the age of 12 to, um, when I got married at 19, um, [00:06:00] you know, my grandmother was taking care of me and it was just a very different, um, experience and, and the accommodations that I had were, um, were great things changed and took a turn for the very worst when I moved to the United States at the age of almost 21.

So, I, I share that. I got married at 19. Um, we had our, our first child and my husband is from the us. We met in the, in the Dominican, got married, had our first child, and then moved here. Um, and the difference in the impact that this condition had in my life, you know, moving forward was just really, really detrimental.

Um, not only did my symptoms get worse, um, because, you know, now I don't have somebody that is taking care of me and understanding how to deal with, with my symptoms and seeking, um, clinical care. But seeking clinical care [00:07:00] myself was incredibly challenged. Um, as you know, you know, there are no tests. Um, it was, diagnosis was again, you know, uh, a huge challenge, uh, then.

And, um, the, a lot of clinicians assume that, you know, this is psychosomatic. A, a woman, you know, you have pain everywhere. You say that you're incredibly fatigued. Um, so it affected, it affected my marriage. It affected, you know, my ability to care for my children. It affected employment many times. I would go on cycles of, you know, um, being able to, to do things and then, you know, over exerting myself and my energy envelope time, after time, after time, going into a decline and, um, you know, having to be housebound bed balance for weeks or mon months at a time.

Um, and that lasted until I was [00:08:00] diagnosed with Chiari Malformation, um, in 2015. And that diagnosis, what it allowed me to do was to, to be believed, not just in the clinical setting, but you know, extended family, um, and other, um, extended relationships to where there's a concrete thing that you can put a finger to and say, this is what my symptoms are due to.

And then the landscape, you know, changed again from that perspective. 

Dr. Linda Bluestein: Yeah, it is, it is amazing how when we can see something on imaging or you know, there's a lab test or something, uh, it's so much more often people are believed as compared to when they're, it's like, it's like you're, I hate to say it, but like, guilty until proven innocent.

Like you're like making it up until they can like almost prove that, that you're not making it up. Um, which, which obviously is not the way it should be because we know that our lab tests and our imaging are far, far from perfect. Um, but I wanna come back to a couple of, of things that you said that I thought were really [00:09:00] interesting.

So, age seven, first of all, that is really, really young, of course for the onset of all of this. And, um, also about the Dominican, uh, that you grew up in the Dominican and that the care in the US. Has been, I wasn't sure if it, if it's been less optimal for you or if it's been how healthcare has evolved or your particular support that you had at the Dominican as compared to here.

Um, but I, but it's really helpful information because I only know how the US healthcare system works. Um, and I know how that works very, very well. 'cause I've been working within it for, you know, several decades now. Um, but I don't know how other healthcare systems work. So if you have any insights about how healthcare and the Dominican is, I'd be interested to hear them.

Isabel Ramirez-Burnett: Yeah. So the, the biggest difference I guess with healthcare and the Dominican is that. Um, people are not as easily dismissed when, um, there are no answers that are obvious, you know, whether from a test or, or, or [00:10:00] radiology or, um, you know, explanations that clinicians can come by. There's also a much bigger integration, uh, between what you called, um, you know, I guess natural, uh, remedies like herbs and supportive therapies, um, and pharmaceuticals.

Um, and there is more, um, collaboration with family members. So, you know, my, my grandmother would pursue things relentlessly, but it's not because she was being pushed away, but it was because, you know, a doctor would tell her, um, you know, this is where we are. I don't see anything else that I can be do besides what you are already doing.

Um, so I'm happy to prescribe this or that, or, you know, tell you to continue to do. This or that, but there's isn't really, uh, much further that I can go. We understand that, um, she's having these symptoms, [00:11:00] but we can't understand the why. Mm-hmm. Um, but it isn't, there wasn't at any point, um, the insinuation that this was all in my head.

Um, she was encouraged to pursue it and, you know, giving all of the, uh, therapies that a clinician would have from their toolbox, um, until they couldn't do that anymore. 

Dr. Linda Bluestein: Mm-hmm. That's really good to know. 'cause obviously it's a huge challenge here in the us. People being believed and supported in the medical community, and it's really, really frustrating.

Um, and it sounds like you have experienced those challenges since you've, since you came here. 

Isabel Ramirez-Burnett: Yes, absolutely. Um, I was the first couple of clinicians that I saw, you know, it was a terrible experience. Again, it's the, it's in your head, you know, there's nothing that we can see. Everything looks perfectly fine.

I was fortunate enough, um, about two years in to find a, a much older [00:12:00] clinician, clinician who was again, you know, InterG and, uh, did additional testing and gave me additional support. Unfortunately, that clinician retired about a year and a half into my care. Um, but it gave me the foundation, uh, on top of what I had from my grandmother.

Um, and on top of the, you know, scientific literature that I had at that point to be a lot more involved in my own care and to now become a little bit more of my grandma, although with far less success because there was no, you know, pushing, uh, a lot of the clinicians, um, to be my own advocate, you know, for the rest of the time to do a lot of my research, to try different things to, you know, go to a rheumatologist if my primary care physician was not, um, was not going far enough, was not, you know, investigating, was not willing to try.

Certain therapies, [00:13:00] um, and to at times go even back to the Dominican and see a doctor there that would really, you know, help me. Yes, absolutely. And it's, it's something that a lot of immigrants do. A lot of the times it's due to the cost. Um, but a lot of it is also due to, um, the fact that you will have that support, um, that clinicians will work with you and try to, you know, refer you or look for alternatives or, you know, find solutions.

If you bring them a study and say, you know, this is what's, what's being done. They're willing to prescribe things of label, um, a lot more often than, than clinicians here are. 

Dr. Linda Bluestein: That is really fascinating. Um, you know, of course there are people who travel to different countries for medical care for, for different reasons.

And so sometimes it might be plastic surgery 'cause it's a lot less expensive and you're paying out of pocket or you know, if it's a nationalized healthcare system and they can get in for surgery quicker here in the US 'cause [00:14:00] they're, you know, maybe paying out of pocket or something. But, but what you just shared is the first time I've ever heard of someone going, you know, from the US to the Dominican for what sounds like medical care.

It's not surgery. You know, I feel like a lot of the cases are, uh, surgical. 

Isabel Ramirez-Burnett: The medical care there is actually outstanding if you have the money to pay for it. 

Um, 

and in, in, you know, dollars to, to pesos, which is the currency, can go a very long way. Um, so that's, that's part of the reason why, why people go, um, a lot of people travel.

Um, a lot of Dominicans will travel back to the Dominican for a couple of months at a time so they can take care of all their medical, dental, you know, and everything that they need for the year. Because even with insurance, it can turn out to be cheaper and much more comprehensive. 

Dr. Linda Bluestein: Don't even get me started on insurance and all the problems.

I pay so much for my [00:15:00] policy and oh my gosh, it doesn't even cover like, so many things that I end up paying, you know, completely separately for. But anyway, we'll, we'll save that for another time 'cause we would get, uh, really, really off track. Okay. So what inspired you to become an advocate for me, CFS patients?

Isabel Ramirez-Burnett: Uh, definitely my own challenges. Mm-hmm. Um, that was, you know, at the, at the forefront of, um, my inspiration, um, for doing this because I saw how hard it was. Um, a lot of the, the times that I was working, I was a pharmaceutical sales rep, right? And I would go into doctor's offices to discuss my products and, um, I would be, uh, talking to a physician.

Um, about the products or you know, about health in general about a certain condition, and you don't want to know how many times, you know, this clinician would say that fibromyalgia, uh, you know, [00:16:00] ME ccf SA number of conditions were all in your head. 

Mm-hmm. 

Um, while at the same time I am, you know, standing in front of this physician feeling like I'm going to collapse in a minute, having to go to my car and rest and take, you know, things in between visits just in order to keep my job Right.

Right. Um, and if, if there's something that I'm very guilty of is being like, way too bubbly and overly optimistic, um, when I shouldn't be, and to, to have somebody tell me to my face that everything that I'm feeling in my body. Is not real, and it's because I'm causing myself, you know, to do that, um, is incredibly frustrating.

Mm-hmm. Um, and with working in the pharmaceutical industry and, and my own, um, you know, um, inspiration for learning [00:17:00] more, um, I can read scientific studies, I can, you know, discern information and I lo and I know that a lot of people can't or don't even want to. We have to become our own, quote unquote doctors to bring solutions to ourselves.

Um, and, and seeing how complex navigating all of that was, you know, for someone who enjoys it, for someone who can understand it, um, and how difficult it is to pinpoint what works for one person. I. I wanted to help others who didn't have, um, the background, um, and the, the, um, affinity for this than, than I have and didn't have the support from families.

In addition to my grandmother, I've had a very support and husband and, and you know, the rest of my family as well. Um, and I know that people, you know, just, just don't have that. So being able to [00:18:00] advocate for those who, who can't do it has become my life mission. 

Dr. Linda Bluestein: What are the most common misconceptions do you think about me, CFS and how do you address them when you are advocating?

Isabel Ramirez-Burnett: The most common misconception, I think is the part of the chronic fatigue syndrome, right? We all get fatigued, um, and people get, you know, tired. Um, whether it is be people, some people get more tired than others, right? You may have more stamina or less. Mm-hmm. Um, and. There is a, a misconception that chronic fatigue syndrome is just fatigue, which is very, very different than just fatigue.

Mm-hmm. It's like you have a, a battery that just doesn't charge, and it doesn't matter how much you will yourself to do something or how much, uh, desire you have to do something. It's like there's an invisible wall in front of you that keeps you from doing it body-wise. It's [00:19:00] not a, it's not a mental block is, is a lack of energy that is way disproportionate to whatever it is that you are doing.

So for some people, um, you know, it may be that in order to get through a day of work, you have to go home and sleep for the rest of the night, which I did many, many days. Or you have to rest for the entire weekend. Um, and you have no. No other social life or no other things that you can do just to maintain employment.

While for other people who are on the more severe end of the spectrum, um, you may get incredibly sick just from going to the bathroom, right? That's all the battery that you have. And then another common misconception is how much that can fluctuate within one person. Mm-hmm. From periods of time or even within the same day.

[00:20:00] Um, for many years I had a code word with my husband, which is I hit the wall, right? Mm-hmm. Mm-hmm. And it's that, that point in which my battery has completely shut down and I can't do anything else. Um, and he understands that. But to see somebody that is maybe just, you know, having dinner or cooking dinner or doing something else, and all of a sudden.

Your battery just dies. Um, it's, it's just very hard to understand. Um, there's a lot of heterogeneity to the condition, so some people may present the, the quote unquote, fatigue is, is common to a lot of people. But some people have pain, some people have chronic migraines, other people have intolerance to sounds and lights.

Um, there, there is so much variation in the, uh, multitude of symptoms and the comorbidities from one patient to the next. [00:21:00] Um, but the, the most important thing is that the fatigue is not just a common fatigue, it is a true draining of, you know, your life force. Mm-hmm. Um, and your battery that you just can't, will it to replenish, uh, you know, um, by yourself.

Dr. Linda Bluestein: And we just recently spoke with Dr. Yeoman, and I definitely want people to go listen to that episode as well. 'cause he gave a very, uh, elaborate explanation of post exertional malaise. And, you know, your explanation was so great because I think, I think you're right. I think for people who have not ever experienced this, you know, they really have a hard time wrapping their heads around what it must be like to have that extreme intolerance of activity being upright.

Um, and especially like you said, given that it varies from day to day, minute to minute, hour to hour, [00:22:00] I think a lot of clinicians, it's very, very hard for them to understand conditions that vary that much kind of, I feel like scientifically they're, they don't, they feel like that doesn't make sense. You know what I mean?

So they, they, so therefore it must not be, it must not be true what you're, what you're telling me. 

Isabel Ramirez-Burnett: Absolutely. And shout out to Dr. Yeoman. Absolutely love, um, love him as a clinician. Um, if you don't mind, I'll also give a plug for the Remission Biome YouTube channel and he has, uh, a presentation there. Um, that was absolutely fantastic as well.

Dr. Linda Bluestein: Yes, absolutely. And we are definitely going to talk about remission biome, uh, later on 'cause I definitely want to dig into that and, uh, understand more about what, what you all are doing there. I think it's wonderful. And yeah, he was, he was such a great guest as well. Got such wonderful information and I think a lot of people that are listening to this episode, um, if they haven't already listened to that episode, are gonna definitely want to go check that one out, um, as well.

So we'll [00:23:00] link that in the show notes too, so people can find that easily. So if people are listening to this and they're like, gosh, I do know somebody who has me, CFS, um, maybe it's a friend, maybe it's a family member. Uh, how can they best support that person? 

Isabel Ramirez-Burnett: Um, I think that the, the most important part of the support is to understand that what you see, um, is not what that patient is necessarily feeling.

Um, there isn't always an outward, uh, you know, visible manifestation of the conditions. You don't see a fever, you may not see, you know, sweats, you may not see somebody, um, outwardly collapse, right? Um, but when a patient is telling you how they feel, believe them because it is just, um, there are no words to explain the things that go on, um, within your body.

It's like when you're standing in front of the [00:24:00] refrigerator just looking for, uh, you know, a snack and you feel like gravity is a hundred times. Um. More than mm-hmm. You know, it normally is because your body, the orthostatic intolerance is hitting you. There is no way to see that. Mm-hmm. Um, there's no way to see pain.

Um, and chronic pain patients hide it very well. Um, people say, I don't have tolerance to pain. And I think it's the complete opposite. There's a high tolerance to pain because to live with it, you know, on a daily basis, um, shows that you have a, a, a high tolerance. Um, you know, there's, there's so many symptoms that just don't have an outward manifestation.

So the best way to support somebody is, is to understand that they're not making up what they're telling you. It's, it's, it's true. Um, and the other thing is, um, to ask the patients how they need that support. Um, not to [00:25:00] assume, um, and, and provide the solutions that you think would fit, um, if you were in that position.

But to ask the patient, you know, how can I support you? What can I do now, um, for you? What can I do later? Whatever the availability it. Availability it is that you have to support that patient. Ask the patient how that can be, um, accomplished best and that's how you'd be able to help the most. 

Dr. Linda Bluestein: Yeah, that's a good point.

'cause I think we often don't think to ask the person, you know, how can I help you? And maybe even because of the fact that there's often cognitive, um, challenges as well, brain fog and things like that, which we've talked about multiple times on the podcast. Maybe also too, you know, maybe asking how can I help you?

But also then giving some specific examples. You know, would it be helpful if I bring over some food and if so, you know, what kind of restrictions do you have? Would it be helpful if I drove you to a doctor's appointment or, [00:26:00] you know, give, like they say if, if you're trying to help a friend who has cancer mm-hmm.

You know, don't just say, you know, how can I help? But giving something specific, um, I think really shows that you really do wanna help. So it's hard, it's hard to ask for help. Right. I think as, I think as patients, um, people are, you know, maybe the, with the very, very closest family, but even sometimes then it's hard to ask for what we need.

I think that's a lot of thi I think that's something that a lot of us struggle with. Um, what advice would you give to newly diagnosed patients about navigating the healthcare system? 

Isabel Ramirez-Burnett: Hmm. Newly diagnosed patients? I'd say even before navigating the healthcare system is plug into the patient community.

Mm-hmm. But also do so understanding that you have your own agency, right? One of the biggest challenges that we have is that we don't have a lot of clinicians like yourself and Dr. Yeoman, um, that, um, [00:27:00] understand this condition and that take a lot of time with patients and that are willing to try different things and know, you know, what set of tests to order to keep digging, um, for, you know, potential solutions.

Um. So plug into the greater community, um, to understand all of the routes that that people go through. Um, and the other, the other, um, advice that I would have is start documenting your symptoms and your results as soon as you can to the extent that you can. And this is where a friend or a family member, you know, may be most helpful if, if that's a challenge for you.

Um, because it's very, um, difficult to recognize the little improvements that you may have when you introduce or remove something, the 2%, the [00:28:00] 5%, because it gets very lost in the noise of everything else that you're dealing with. Mm-hmm. So if you're documenting, um, you know, tracking, um, as much as possible, um, wearing wearables and seeing how that changes, uh, from day to day, what is, what does your wearable look like when you feel your best and when you feel your worst.

Um, does anything change when you start a new medication or a new supplement? Does anything change when you, uh, let's say spend, uh, two, two hours on Zoom? Um, keep track of those things so you can understand and make, um, informed decisions about your body. Um, and the other thing is that something that perhaps didn't work at one point because of, you know, the conditions of your body at that time doesn't necessarily mean that it won't be helpful.

At a later time [00:29:00] when, uh, those barriers, um, have been removed. And that's another aspect where tracking really helps. So you can see any correlations, um, and you can start making assessments of how to move forward, um, with, with your clinician. Um, the other thing would be to continue to seek out, you know, um, if not expert clinicians, at least the ones who are open to working with you, whether it is open to you bringing them, you know, the latest studies or bringing them anecdotes of things that have worked for other patients, whatever the case may be.

Um, you don't have to be stuck with, with one clinician if one doesn't work. You know, you can seek others, um, and find the ones who are willing to work with you, even if they don't understand fully what is going on. 

Dr. Linda Bluestein: I, I love that because I do often encourage people that if they see a clinician who's [00:30:00] open-minded and curious, um, and empathetic, that that can be just as valuable or almost as valuable as someone who has expertise in your condition, depending on what you need at that point in time.

Um, so those are really important features to be looking for. And I also love how you pointed out about. Tracking your symptoms and really paying attention also to improvements. I, I know even myself, like, I think I tend to, you know, really notice if things are not as good, if I have more pain or, you know, something's not as good as normal.

But then if, when something gets better, I feel like we often miss it. 'cause you know, we're, we're kind of, it's very easy to take it for, take it for granted. Uh, if, if things are starting to get a little bit better. So think that's an excellent suggestion because if you have changed and then things are getting a little bit better, that's important information.

As a clinician, I always wanna know, know, and I even find when I go to my doctor's appointments, I go to a doctor for my TMD that's probably the most like, [00:31:00] routine follow up that I have. And she'll ask me all these questions and I never know the answer. I am like such a terrible patient in that regard.

'cause I'll be like, I don't know. Mm-hmm. You know, and we really should try to pay attention to those things because that's important data for them to go off of to, you know, make future plans for our, you know, for our treatment plans and everything. Um, we're gonna take a quick break and when we come back we are going to talk about, uh, what Isabelle has found most helpful in her care, and also about the different nonprofit organizations that she's working with and, uh, what patients can do to get the best possible treatment.

So we'll be right back. 

Isabel Ramirez-Burnett: Yeah. That

Dr. Linda Bluestein: this episode of the Bendy Bodies podcast is brought to you by EDS Guardians, paying it forward in the Ehlers Danlos syndromes community patient to patient for the common good. I'm proud to serve on the inaugural board of directors for EDS Guardians, a small charity with a big mission and a big heart.

[00:32:00] Now seeking donors, volunteers, and partners, patient advocacy and support programs available now. Travel Grants launching in 2025. Learn more Shop for a cause at their swag store and join the revolution@edsguardians.org. Thank you so much for listening to Bendy Bodies. We really appreciate your support.

It really helps the podcast when you like, subscribe and comment on YouTube and follow rate and review on all audio platforms. This helps us reach so many more people and spread the information to everyone. Thank you so much again, and enjoy the rest of the episode.

Okay. We are back with Isabel and I would love to know what role you think doctors and healthcare providers should play in improving the experience of ECFS patients. 

Isabel Ramirez-Burnett: Ooh. It's a, it's a huge challenge, and I understand it is for clinicians because of the, the structure of our healthcare system, right? We [00:33:00] are in a system where, um, you know, 15 minutes if that is what's common and in this type of condition where it's complex and it's multi sized, systemic, 15 minutes just doesn't cut it right.

Um, to understand, you know, where the patient is, is coming from. Um, I think the, the biggest thing that clinicians can do, um, to work within the constraints of the system that we have is to remain, um, on top of. The, the knowledge and the education and the research that exists and to also plug into the patient community.

Um, the doctors who are doing that, um, you know, are so much more armed to help patients no matter what those constraints are, are. Um, so that's where clinicians can really help. There's [00:34:00] education out there. Our organization puts out, you know, um, expert clinicians, um, round tables that are free and available to everyone.

Um, there are many organizations that are, you know, putting out education. There are clinicians who are willing to mentor others and to share that information, um, that can help expedite things and to try things with, with patients. Um, and then understand that, you know, even though you have the scientific.

Knowledge, and you are the clinician, the patient is the one having the lived experience mm-hmm. Of this condition. Um, so when you partner up as a clinician, there is a much greater chance of success. Um, and I, you know, I think that, you know, clinicians want to, to have that, um, for themselves and, and for their practice.

Um, so those are the type of things that can be done. [00:35:00] Um, there's also, uh, private clinicians who, you know, don't take insurance. Um, I know it's, it's limited to people who can pay, but, um, you know, it also sort of decongest the, the, the burden on the rest of the, uh, population that does have to stay within the insurance system.

So I don't see that as a, as a negative. Um, because of that, um, the more clinicians that can do, uh, care in whatever capacity they can do it, I think it's, it's a plus, um, for the community. Um, but in whatever system you are, just understand that the patient is your partner. Um, don't be paternalistic and, you know, flu your credentials to dismiss what the patient is telling you.

Keep up with the literature, um, and, and, um, bring the empathy first and foremost before even [00:36:00] bringing the knowledge. There's the, I guess the trope out there that, you know, people don't care how much you know until they know how much you care. And that's no different for a patient. Yeah. 

Dr. Linda Bluestein: Yeah. That I lo I love that saying, and I also really appreciate how you're talking about, you know, feeling the symptoms.

'cause that's the other thing is only, I only know what my body feels like. You know, what your body feels like. I don't know what your body feels like. It. The patients that I have even seen for the longest, and I have the deepest relationship with, I mean, I, I hear what they're telling me, but I, I've never lived in their body.

So, you know, the lived experience is so important and I think it's so important to respect that and I really love all those, um. Commentaries and thoughts that you're sharing. Um, what about how patients are, are, can be most empowered if they don't have a clinician or a team who really understands the complexity of their condition?

Isabel Ramirez-Burnett: Benefit [00:37:00] one patient can, um, be a huge detriment to another. Um, something that, you know, a patient may be take, may be able to take, you know, 50,000 IUs of vitamin D. Another one just, uh, does terrible with 500. So there's, there's a lot of variation in there. Um, patients themselves, again, plugging into the patient community, staying informed, doing as many, um, tests as you can possibly afford so you can understand and have a compilation of where you sit, uh, where your biochemistry is.

Um. Is really helpful. Um, there are sometimes clinicians that even though they're not doing, um, you know, they, they're not being your doctor online though, they can tell you, okay, this means this, and then you can, you know, uh, go from there and do whatever you can with, [00:38:00] with that information. Um, so there, there are those, those things that, that patients can do.

If you have any inclination for reading, you know, um, study after study, definitely do that. 'cause that is incredibly helpful. Mm-hmm. Um, understand what is being prescribed to other patients that are most like you. Um, and that can be very helpful. What's being done in other countries is also very helpful.

Mm-hmm. And then, like I said before, don't feel like you have to stay with the clinician that you are with. If they are not, you know, at least open to discussions and, you know, helping you and, and being, um, and receiving the information that you are provided. Continue to search until you find that clinician that, that will work with you and, and try to help you at least.

Dr. Linda Bluestein: Do you have tips for, let's say somebody you know, [00:39:00] does, uh, read a study online or, you know, comes across a journal article or something and or talks to other people in the community and they decide that they want to try a certain medication or supplement. Um, do you have tips for how that person can bring that up to the clinician in a way that's more likely to be received?

Well. 

Isabel Ramirez-Burnett: That's a great question. Um, I mean, you have to assess that relationship first, right? If you brought an article to your, uh, provider, and the first thing that they say is the internet is not a doctor, then, you know, that's, it's not a, an they're not going to receive anything. Um, well, um, however, you know, it, it may be presented from the perspective of, oh, you know, my friend or somebody that has very, uh, a lot of the same symptoms that I do is taking this, is this something that we could try?

Um, so saying it in a way [00:40:00] that doesn't feel threatened if the relationship is not great. Um. If, if you can develop that relationship, then that may be what comes first before you can move forward and, you know, be a resource for your provider. You have to understand the, the, the clinician that you're working with to know, you know, how much input they're willing to accept from you.

Dr. Linda Bluestein: Mm-hmm. Yeah, and as you pointed out earlier, hopefully you have a sense that you're on the same team. Unfortunately, sometimes I feel like, you know, it, we're, we get the definite vibe in the room that we're not on the same team, and so that can be a big problem. So, you know, if, if, if you do have that kind of relationship, I think it's gonna be so much better received than if it's a more antagonistic relationship or just, you know, not, not something that's, um.

You know, a good collaboration because you want these decisions, like you [00:41:00] said, they should not be paternalistic. It should be what's called shared decision making. So together, there should be a conversation and well, here's some of the options and here's some things that we can do. Um, and speaking of some of the things that we can do, are you willing to share, um, anything about how you manage symptoms on a day-to-day basis?

Like, I don't know how much post exertional malaise or chronic pain or anything like that that you have, but are there certain things that you've been able to do in order to manage those symptoms? 

Isabel Ramirez-Burnett: Oh, absolutely. I mean, in, in 47 years dealing with this, this condition, there is a lot that I have tried and a lot that I have learned.

Right. Um, so I take two main medications, which are unfortunately very stigmatized. Um, one is a pain medication, Tramadol, and the other one is a stimulant. Concerta. I also have narcolepsy. So the Concerta was, you know, prescribed for that. Mm-hmm. Um, and in [00:42:00] doing my own research and realizing, you know, Tramadol for example, it doesn't just help with pain.

Um, I've known for a long time. It helps with the fatigue, it helps with the brain fog, and it also helps with Pam. We did a project in which we measured, um, lactate with, uh, lactate measuring devices. Um, and I can see the lactate rising when I'm in pem to ridiculous levels. And how after taking Tramadol, it goes back down to normal levels.

Um, and there's, there's actually a recent article of, um, Tramadol and Covid mm-hmm. That shows the different mechanisms and how many things. It helps, it helps with inflammatory cytokines. Um, it helps with ROSI mean, it's, it's just, um, another, I don't wanna call it failure, but you know, another shortcoming if you will.

Of the medical system that we have is that we get a medication that gets approved [00:43:00] for a particular indication, and that's where it stops for the most part, when one medication can have so many different mechanisms of action, um, sometimes we do get, you know, uh, the few that are prescribed for one thing or, uh, in another that got accidentally discovered as a side effect.

Uh, but that's not, that's not often right. So we, we definitely need a system of, um, you know, reusing medications that are already on the market for all of the conditions that we have and doing better research in that area. Um, so tramadol is one that helps me. Um, I would say it's probably responsible for maybe 40% of my function.

Mm-hmm. Which is huge. Mm-hmm. Um, and then on, on the Concerta side, even though I take it for narcolepsy. Um, when there have been shortages and I have been without it, uh, for many [00:44:00] days, I realized how much it impacts my orthostatic intolerance. Mm. Uh, how much it helps it, right. Um, and we had a, a round table recently with Dr.

Rowe, um, and I asked that question and he was like, yeah, we use it with, with patients for orthostatic intolerance. 'cause for a lot of patients it's, it's a great solution. Um, so I was like, okay, I'm not the only one who's, who's seeing that. Um, and then besides those two, um, there are things that I use, whether it is continuously or, uh, periodically, um, to, to address, you know, a baseline decrease, um, or cer certain symptoms, things like NAC.

Um, I have, um, you know, B vitamins that are on all the time. Um, I have my, uh, E-P-A-D-H-A. Um, there's a number of supplements that I use, um, you [00:45:00] know, whether it is, uh, ongoing or I pulse them or I have them on hand for when certain symptoms, you know, do happen to come on. Um, and then one of the things that I, that has had a huge impact, um, you mentioned earlier we got talking about remission biome is, you know, doing that protocol which we are still studying.

Um, and that gave me a period of about nine months where my best line was the best that it has been. Um, you know, for almost any time. The, on only other time that I had a similar baseline increase was, um, again with antimicrobials when I had, uh, Lyme, um, which also affected, you know, a, a period of time post the treatment where my baseline was nearly.

Healthy, um, you know, with a lot of symptoms decreased, um, and just being able to, to function, um, even better [00:46:00] than a healthy person, um, a lot of the time. But it's, it's, um, it's hard to, this is one of the places where it's the hardest to be prescriptive because, you know, a combination of different things.

We don't have a cure, right? But we are seeing that, um, what affects function, um, and even symptoms to, uh, sometimes a lesser degree. But if, if the function is there, then the symptoms can be better managed and overlooked. Um, but what works, um, is a combination of different things for different people.

Dr. Linda Bluestein: Definitely. I think that's definitely one thing that I've learned in my practice is there's nothing that works for everyone. So that really does make life challenging. And I do wanna come back to a few, uh, of the acronyms that you throw out. 'cause people might be, wait, what was that? So, e, p, A and d, HA.

Those are Omega-3 fatty acids. NAC is n acetyl cysteine, r os is reactive Oxidative [00:47:00] species. Okay. Um. Then also I wanted to comment about the tramadol because that is really interesting. I actually had a patient very recently share that journal article with me, and I have to confess, I had not seen it and it was quite interesting.

And as a prescriber, one of my biggest concerns with opioids and tramadol, I should point out, was not originally classified as an opioid. It was classified as an opioid later on. And I don't know what year that was, but it started out being classified as kind of a mixed agent because it does have some like SSRI or antidepressant, um, type effects act acting on the serotonin system as well as having, um, action on the mu opioid receptor.

So I thought that, uh, study was really, really interesting. One of my biggest concerns as a prescriber is, you know, are we gonna get into a situation where we need to escalate the dose? Um, do you mind sharing if you've been able to be on a stable dose for an extended period of time? 

Isabel Ramirez-Burnett: Um, yeah, so I've been taking it for 24 [00:48:00] years now.

Oh, wow. Um, and my dose was much higher when I was at, at my worst, right. Mm-hmm. And a higher dose has lesser of an impact. Um, the, the more severe a patient is, um, it is a synthetic opioid, and it, it got, um, scheduled, um, I think it was in 2014, somewhere in there. It was actually a rep for, um, Johnson and Johnson when I started.

Oh, were you really taking tramadol? Yes. And that's why I started, I asked my doctor to prescribe it because I understood so much about how it, you know, how it works. Mm-hmm. Um, and, um. It is, it is a, a synthetic opioid. The data shows that the, um, addiction rate is so much lower. I think it's one in 100,000 patients in about 90% of those patients have a history of addiction.[00:49:00] 

Um, and, um, the dose, you know, can definitely be managed, uh, for, for most people without any withdrawal effects, um, when you are up and down in, in your baseline. Right. So at one point I took the max dose, um, which is very far from where I am right now. Mm-hmm. Um, and even, you know, on my better days, I'll, I'll skip it or skip a dose or, you know, whatever the case may be.

I know people take it intermittently. Um, I have a friend, for example, that takes it when she needs to go to doctor's appointments or, you know, wants to, if it's, if she's having family over and wants to be able to participate in activities, um, she'll take it then. Um, I know a lot of fibromyalgia patients take it because it is indicated for pain and that's, you know, in fibromyalgia pain is a, a, a much more [00:50:00] prevalent, um, than it is in e ccf s Um, so it is, it is something that the patients understand that it's having a much greater impact than just affecting pain.

Um, but again, the studies haven't been done. It's not widely used. It is very stigmatized because it is now, um, you know, classified as a, uh, as a control substance. Um, doctors don't wanna prescribe it because they're afraid that, you know. A patient is gonna get addicted. Um, so there are, there are many barriers to it, despite how much it can do for a patient.

Mm-hmm. Yeah. Oh, and the other challenge is, and this is something I know from my, from my pharma days, is that the, um, the effect of it is very different from using it acutely than using it, using it, uh, chronically. Right. Um, and if it's not titrated [00:51:00] correctly, uh, patients can get dissuaded from using it because of the transient side effects.

Um, and that's something that was very frustrating as a pharmaceutical rep was that, you know, even though I've repeated it time, after time, after time, um, the titration just wouldn't be done. Um, and then patients would get scared because of those initial side effects. 

Dr. Linda Bluestein: And when you're talking about initial side effects, you're talking about constipation, nausea.

Isabel Ramirez-Burnett: Nausea and dizziness are, are more of the ones that, uh, patients get scared from. Um, especially the, the dizziness. Um, and if it goes for a week or two, you know, it's, um, it's even more prevalent that patients will discontinue. Um, and also the pain effects seem to be greater when it's used, um, you know, consistently rather than that initial phase.

Um, so if the pain is not being, you know, uh, very well controlled and then [00:52:00] you're getting nausea and getting dizzy, that's, you know, definitely a reason for discontinuing. If you don't know that, uh, that those are transient side effects and that they could have been altogether avoided just by titrating slowly.

Especially in this patient population. 

Dr. Linda Bluestein: Yeah. Yeah. It can be hard to know sometimes when, when to persist with something and when to, yeah. Either, either back off. And I, I ask people all the time to give us another trial of medications because sometimes the way it was tried the first time, it was like you said, you know, started at too high of a dose or, you know, maybe it was an excipient problem or something like that.

Um, I'll be sure to link that article in the show notes so people can read that, uh, about tramadol and, uh, long covid. So I think people would find that interesting. And what about self-care? What do you think are some good self-care things for people with me ccf? SI 

Isabel Ramirez-Burnett: think that for self-care, some of the most important things is.

Having [00:53:00] a supportive community, whether that's your family, your friends, um, you know, if you live alone, um, the people that you have the most con contact with that understand when you are down, um, the things that you cannot do because a lot of stress comes from, um, wanting to do something right. You don't feel well the moment that that event comes up, even if it is a phone call with a friend, and then you feel like you're disappointing your friend and they don't understand, or your, your family member that at that moment you cannot, uh, do that.

Um, so having that, that closeness, um, and on having a group of people that understand. You know what it is to, to have this condition, I think is, is important. Um, and then, um, easier sense said than done is to ditch the feelings of guilt. Mm-hmm. [00:54:00] Um, I think that, um, you know, it's, it's bad enough that you have to live with the, uh, physiological symptoms and consequences of the, the condition, but then the, the feelings of guilt for not being able to, to do things that, um, you wanted to do or other people expected you to do.

Um, and, um, again, easier said than done, that pacing, resting when you need to, um, not overburdening yourself with things that don't need to get done. Um, and then the, the other things is, you know, if you can. Um, go out of the house or afford it, you know, things that are supplemental, uh, benefits, going for a massage if you can, or, um, lymphatic massage is, is usually very helpful for people.

Um, [00:55:00] going for red light therapy, um, going to do something you enjoy if you can, when you can, um, you know, building those things. I know I, I've heard from so many people it's, it's like I feel guilty if I go out with a friend because I haven't done the things in my house that I need to do or have not done this for my children, or whatever the case may be.

Um, and this condition is, is is enough of a burden to keep accumulating more on top of it. 

Dr. Linda Bluestein: And I think so often we forget about the things that bring us joy because, well, we can't do them in the way that we could do them before. And so we, I think, often don't have anything really that we enjoy doing. So I think if you can do something, even if it's you're doing it in a different way, maybe you used to do some other form of art, but now, you know, you can't, you can maybe draw for just a very short period of time, but at least maybe if you [00:56:00] can tap into something like that, that, that you used to like doing, I think that can be helpful also.

Isabel Ramirez-Burnett: Absolutely. 

Dr. Linda Bluestein: What about the overlap between Long COVID and M-E-C-F-S? How do you think that has influenced awareness or research into these conditions? 

Isabel Ramirez-Burnett: That's a great question. Um, me, CCF s has been a very neglected condition for, you know, decades. Yeah. Um, whether it is from the clinical or the research perspective, um, again, the fact that there are no diagnostic tests, there are no treatments, um, no approved treatments, um, you don't wear, um, the condition on your face.

Mm-hmm. And, um, you don't always know when it happens. Right. For a lot of us, it is infection trigger, but, um, the onset can be, you know, weeks to a month or, uh, even more from when that infection happens. So people don't even, uh, necessarily correlate it. Um. [00:57:00] I think what several of, of the things, unfortunately, because the fact that this happened is very unfortunate for long covid, um, is that we saw the consequences, you know, in a massive amount of people, um, at once.

Um, the presentation is very similar with the variability in severity, of course, um, to M-S-C-F-S. Um, the, the statistics vary, but you know, the, the most common cited ones is that 50% of lung covid patients meet the criteria for me. CF s um, the rest have different subtypes of long covid where it's neuro covid, um, or cardio covid, uh, or, you know, the, the, the pots, the autonomic presentation, um, that don't meet the full criteria.

For me, CCFs is very different, but there's a. A very large group that does. [00:58:00] Mm-hmm. Um, and I think that for clinicians, researchers, um, and the community at large, having such a large number of people, um, you know, that have had the onset of long covid as a consequence of COD, um, has been, you know, uh, eyeopening for everybody.

Um, with that said, even though there is a lot of overlap between the two conditions, I think that it is important that, um, we go on to study the, the differences, um, you know, and, and understand better whether different pathogens, uh, can trigger different types of E ccf s um, and all of the nuances that go, um, into, into the two.

Um, whether the presentation is different closer to the onset versus, you know, those of us who have had it for. A long time. I, I think we have a huge [00:59:00] opportunity for really diving deep into studying, um, everything that happens from beginning to end since we still, you know, have covid going on and we can, you know, uh, prospectively study people who develop long covid.

Dr. Linda Bluestein: Mm-hmm. And I wanna also circle back, 'cause I, I was making some notes and then I, I, I got most things on the list, but I missed one. Um, you mentioned, I think, when you were talking about that, uh, things that you have found most helpful with your symptoms. I think you might have mentioned something about a protocol that you're following.

Did I catch that correctly? 

Isabel Ramirez-Burnett: Yes. So, um, I did not currently follow in, although I might, uh, do it again, um, soon. Uh, the Remission Biome Protocol is a, is a protocol that got started on X, uh, because patients were discussing, uh. The science of me, ccf s and the things that had helped. But one of the things that, um, that was central to it [01:00:00] was the fact that several patients, um, had had remission events with antibiotics.

Um, and the most commonly used antibiotic was, um, Amox, claf, amoxicillin, chlorinate. Um, so to make a long story short, um, patients, um, devise a protocol based on the science, based on what was understood about, um, me Ccf s presentation and, and long covid as well. Um, and based on those experiences with antibiotics, um, in conjunction with, uh, their clinicians, and I was one of the first three patients who did the protocol, uh, back in April, March of 2023.

Um. And upon doing that protocol, I was, uh, like I said before, I was just, um, nearly the levels of a healthy person, um, you know, for the following nine [01:01:00] months. And what sort of took me out of that baseline, although not back down to where I was before, was another infection, um, in November of, um, 2023. Mm-hmm.

So upon that, we organized, um, a more formal, uh, patient led, um, research, um, self experimentation, uh, type of study, um, where patients, um, col in collaboration with their clinicians. Would follow the protocol and that is still ongoing. So that was initially a cohort of 50 patients. Um, that again, it's still ongoing.

We have learned so many lessons from it and, and modified as we go. But out of that, um, the organization, Renegade Research, um, was, was born and remission. Biome is now the largest project of, uh, Renegade Research. Um, [01:02:00] and what Renegade Research does is a is a patient-led nonprofit organization that has three legs.

One is Agile led research, um, one is education. Um, we are doing the, the round tables and actually developing a, an education platform that's going to be based on systems biology and biochemistry for clinicians to really understand all of the nuances and be able to devise. Um, you know, uh, testing and treatments for, um, for their patients.

And then the other leg of the organization is, um, practical advocacy. Um, because what ends up happening with a lot of patients is, you know, you lose your job because you, you can't work, right? And for a lot of people, they also lose their support, whether that be a spouse or, um, a family who doesn't believe them.[01:03:00] 

Um, they lose social support, they may lose housing. So we're looking at seeing how do we connect those pieces so there is, um, care at all levels, right? Because without, without those basics, if you don't have housing, if you don't have food, if you don't have the basic needs cover. Looking for clinicians, you know, without even having insurance to begin with is, is just not possible.

Um, and if you can't afford the, the medications or the supplements, you know, you just can't follow through on that. So that's a, a critical, um, foundation to being able to do the, the rest of the things. And then the recognition that clinicians are not, um, necessarily understanding of what goes on with the condition.

And a lot of clinicians want to, and, you know, may not have the, the time, um, or the [01:04:00] ability or know where to start to see what's the latest research, what are patients experiencing, what are other clinicians doing? So we're bringing that information to them. And then the agile research is doing. Pilots and proof of concept studies, um, based on those experiences that are brought on by the patients of what's working for them, what are their observations, what are they tracking, that then we can aggregate all those NO and of ones, um, and pull all that data together, analyze it, and then, you know, um, uh, minimize the noise to see the signal.

Mm-hmm. So larger studies can be done and they can be done out of the, out of the things that, um, you know, have the, a potential to make up a bigger difference in the quality of life of patients. 

Dr. Linda Bluestein: That's really great 'cause you can get some really interesting anecdotes, but then you don't know, does that [01:05:00] extrapolate to a larger population?

So that's wonderful that you're, that you're doing that. So, uh, we're gonna need to wrap up, unfortunately, and I always end every episode, as you may know, with a hypermobility hack. Um, do you happen to have a hypermobility hack that you can share with us? 

Isabel Ramirez-Burnett: Ooh, yes, I have a few. Okay. Um, one of the simplest ones, um, I like to share, um, if, if somebody can of course get, you know, on the floor is how wonderful the floor can be for decompressing.

Just laying on the floor by itself, whether you can move your arms around you, um, you can move your back, um, you can, um, you know, just provide that surface that kind of pushes against your structure. Um, to be able to decompress, um, is something that can really help. If you can go, for example, against the wall and bring your legs up when your, [01:06:00] you know, hips are out of place, that's something that can generally help.

Um. But another thing is to the extent that is possible is working on stability. Um, connective tissue needs to have the tensile strength in order to be able to hold your skeleton together. Right? Um, and for M-E-C-F-S patients, exercise can be a big challenge, right? Depending on, on where you are. Um, so disconnecting the concept of exercise with mobility in order to be able to do the things that can help that structure.

Um, you know, that the integrity of the structure, um, stay together. Um, so whether that is, you know, moving your arm in a certain direction, um, or it is just laying on the floor to decompress. Um, and then another great source of, um. [01:07:00] Things for Hacking is, uh, Kevin Malone's book, uh, living Well with EDS, which is, you know, applicable to a lot of people with hypermobility.

If you have a pt, great. Um, but if you don't, there are, there are techniques in that book that can be really helpful for, for helping, um, maintain that strength? 

Dr. Linda Bluestein: Some things that people can do on their own, even if they don't have a pt? 

Isabel Ramirez-Burnett: Yes, absolutely. Yes. Very simple. Um, things that can be, you know, implemented, like taking the palm of your head to your forehead.

And pressing softly or pushing your, your, um, shin back, you know, if you have, uh, problems with your neck. Those are very, very simple things that can be done. Um, you know, for the majority of people. Even if your energy is extremely limited, um, that can help, you know, with that integrity and, and keep the pain at VA and keep the hypermobility a little bit [01:08:00] more.

Well, um, uh, keep your body together, 

Dr. Linda Bluestein: keep it a little more, more well managed. Okay, great. Um, thank you so much for joining us today, Isabel, and, uh, it was great to chat with you. Before you go, can you let us know where we can find you? 

Isabel Ramirez-Burnett: Yes. Thank you. Thank you so much for having me. Thank you for this conversation.

Um, people can find me. Um, I'm very active on x. Um, I'm Isabel Ramirez, RD. Um, and also posting a lot from our, uh, renegade research account, which is at Renegade RES, um, on X as well. Um, if people have any questions, my email is isabelle@renegaderesearch.org g. Okay, 

Dr. Linda Bluestein: wonderful. Well, this has been such a great conversation.

I know ECFS is a condition that is so poorly misunderstood, and I feel like, you [01:09:00] know, a lot of people are probably undiagnosed, like with EDS, a lot of people undiagnosed, of course, and with Dysautonomia people have pots that are, you know, this, this podcast is to help people get the information that they need so that they can get better care.

So I really appreciate you sharing all this information and all the work that you've been doing and, and taking the time to to come on the show. Thank you very much as well.

Well, I really enjoyed that conversation with Isabel and I hope you found it really helpful. I know so many people are suffering from ECFS and really, really struggled to get help, so I hope that you will investigate the nonprofit organization that she's involved with, and also check out episode one 40 with Dr.

Yeoman, because that will also have lots of great tips for you. Thank you for listening to this week's episode of the Bandi Bodies with the Hypermobility MD podcast. Help us spread the word about joint hypermobility and related disorders by leaving a review [01:10:00] and sharing the podcast. This really helps raise awareness about these complex conditions.

If you would like to dig deeper, you can meet with me one-on-one. Please check out the available options on my website@hypermobilitymd.com. You can also find me Dr. Linda Bluestein on Instagram, Facebook, TikTok, Twitter, or LinkedIn at Hypermobility md. You can find human content, our producing team at Human Content Pods on TikTok and Instagram.

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