Episode Transcript
Jill Brook: [00:00:00] Hello fellow dysautonomia patients and super people who care about dysautonomia patients. Welcome all. I'm Jill Brook, your hyperadrenergic host, and today I'm honored to speak with Brianne Dressen, the founder and co chairman of React19, a non profit providing science backed support for people suffering from life altering illness or injury after COVID 19 vaccine, including patients with POTS, dysautonomia, and related comorbidities.
React19 is working on several different fronts to help patients get better treatment, better awareness, better research, even financial compensation in some cases, I think, and it has quite the origin story. And under Brianne's leadership, it has already made an enormous impact. Brianne herself has been through quite the gauntlet of experiences to get here,
while accomplishing all of this and dealing with her own dysautonomia and [00:01:00] related health issues. So Brianne, thank you so much for speaking with us today.
Brianne Dressen: Oh, thanks for having me. I'm excited to be here.
Jill Brook: So for starters, I'm worried that my introduction did not really do justice to React19 and all the different types of work that it does.
Can you give us an overview of React19 and what it has going on right now?
Brianne Dressen: Well, yeah, actually, I think you did a pretty good job, but yeah, so we, we are an advocacy organization that really, you know, flourished and became a thing because of the COVID era. And of course, you know, long COVID came in and just has hammered people's, you know, ability to be healthy and to recover from a virus.
But then also there, there have been some reported instances where the vaccine, the COVID vaccine, will do that, and of course, historically, we've seen that, you know, the HPV and other [00:02:00] vaccines have done that to a lesser extent, but, so, this isn't something that's unique, but in this case, just the fact that so many people receive the COVID vaccine at once, of course, you're going to end up with a larger pool of people all at once getting the same type of side effects, and one of the most prominent ones of those, obviously, is Dysautonomia and POTS.
For which, you know, we can talk a little bit more in depth. So a bunch of us got together at the very beginning of our own experiences with adverse events to the COVID vaccine and long COVID and we decided that you know, things were not moving fast enough or to our liking as far as research and even recognition in doctor's offices.
And so we realized that for us to be able to get the medical care that we needed, we needed to organize well. So we started a 501c3 organization. We got it all, you know, [00:03:00] established legally and and everything, so then we can advocate, not just for ourselves, but for others that we find along the way that are like this.
So, this little grassroots organization is 100 percent volunteer. We currently have 36, 000 members at React19. The majority of them are COVID vaccine injured people in the United States. This is just in the United States. Our international partnership, we have over 18 countries of just the exact same thing, just people that are dealing with this syndrome as well that have organized and, and wanting to push things in their own countries to better advocate for themselves and others in their, in their countries.
In addition to that, we you know, so we really push with research. We have a research grant program that we're just about ready to launch and release. We're really excited about that. As you guys know, finding research money at all for, you know, dysautonomia and for POTS anything with autoimmunity, neuropathy, name it.
[00:04:00] It's next to impossible to, to get the money out of the research facilities hands for that. So we're excited to be able to participate and be a part of the solution there. But then we're also doing a research project with the University of Maryland where we have a thousand participants enrolled currently.
We're looking to expand that to about 2, 000 to 2, 500. And it's going to really delve in deep in treatments, tests, diagnoses, and just symptoms of what's going on. So that's, that's going to be excellent. Right now there's over a million data points currently on that study. And we're going to double that.
So, and the University of Maryland has been pretty excited to work with us on that. And now we, you know, obviously we have our research going on and ongoing with Akiko Iwasaki at Yale also Harlan Krumholz is there, and they really are taking an objective look at the role the spike protein plays in these types of issues.[00:05:00]
So yes, we have several research partnerships that are working, and it's, it's good, it's a start but then we also are delving into education. We want people to be aware of the possibility of, you know, so if they are ending up with their heart jumping and racing for no reason, that there may be a reason for that.
It may not just be that you're stressed. It may not be that, you know, that you need to go on an antidepressant. There, there's, you know, there's a root cause, and we want people to feel comfortable being able to explore that and figure out what actually has, has caused their, you know, the dysfunction in their body.
And we also have action, right? So we're trying to push for awareness on the hill. We're trying to get diagnoses codes added to the federal CMS system so then people can be diagnosed with this specific syndrome. We also have a, a care program where we advocate for people. So people will call in and we give them, it's [00:06:00] essentially a buddy system they'll be set up with.
It's usually a registered nurse who can help them navigate, you know, this complicated system, because as we all know, on average, it takes seven years for people to get appropriately diagnosed with any kind of autonomic dysfunction. It's a long time for people to be dealing with this type of constellation of symptoms that is extremely debilitating and, and, and, you know, also the impact on the emotions and psychologically is immense.
So then in addition to that we also are providing financial support when we can come up with the money for it. So we have raised and distributed 800, 000 to people that are in need, in financial need, for medical expense support. So these grants that we issue are between 6, 000 to 10, 000 and it really literally has, has been able to get people from, you know, their [00:07:00] sickbeds
back into a functional, you know, being able to cook for themselves again, being able to take themselves to the store. There's a story of a young boy who was eight years old who he literally was committed at Johns Hopkins. And actually it was a she. So she was committed at Johns Hopkins because she was crying all the time.
She wouldn't let anyone touch her. You know, she, her legs stopped working. She was in diapers. It's this totally healthy kid just you know, her life just fell apart and they put her in a psych ward. So the mom found us and broke her out of the psych ward and we were able to get her access to medical care through our provider network, through our advocacy network and we were able to get her money so she could then get the treatment that her daughter needed.
And so it was actually through IVIG that this little girl was able to walk into school last fall as if nothing had happened to her. So,
and, you know, that's not the solution for [00:08:00] everybody, but it was just knowing that we've been able to change the life of even one kid has made all of this worth it.
So, yeah, so at React19, we really are focused on being able to support our peers, people that are dealing with the situation, whether it's vaccine injury or long COVID or other, you know, related issues. And the, the root of that is really just because we understand it, right? Because we're living with it ourselves.
And because of that, we're able to continue with our central mission to stay laser focused. So, when there are conflicts of interest or all these other things that can happen, right? You know, there's believe it or not, there's pharmaceutical companies that'll come in and donate money, or they want to donate money, right, so they can have influence on what's going on.
With what we understand, we can, you know, navigate that with the highest level of integrity as [00:09:00] possible because we want to be able to see ourselves get better and our community get better as well.
Jill Brook: Wow, and you mentioned one thing that I wanted to probe more about. You mentioned a provider network that you have.
Can you talk more about that?
Brianne Dressen: Yeah, so, we're obviously, we're nationwide and so you understand as much as I do that there's so many, you'll go to like nine, ten doctors and they'll throw a benzo at you and say, you know, here you go. I don't really know what's going on with you. Good luck, right? And so, yeah, so for us, when we find those doctors that you go in and they're not going to waste your time, we remember their names.
We log their names. We understand who they are. We talk to them about how to help us, right? And these are, these are, believe it or not, there's quite a few of them that really genuinely want to see these complex care patients get better. And they are digging into the science. [00:10:00] They're, they're, you know, looking for the solutions and, and ways to help their patients, right?
And so when we find those people, we grab them, and we bring them into our network. And so, we have a provider directory that's always listed on our website. And it's, it's free, open access for anybody. And then if you don't see someone on there in your area, you can contact us directly because we have a list that's just as long that's private.
So it's a bunch of providers that don't want their name out public, you know, because we all know how crazy the internet is and how nasty people can be. But they do still genuinely want to help people. And so we're able to send private referrals to them. But the cool thing about all of this stuff that we're talking about is it's all 100 percent free.
And we want to be able to continue to do that for free. But of course that is totally dependent on donations from, you know, people that [00:11:00] see this and appreciate the work that we do. But yeah, so that's the provider network.
Jill Brook: That is awesome. And I can almost hear our listeners salivating right now. So don't worry, listeners, we will link to Brianne's website so you can all go there and get all this wonderful information.
Okay, you mentioned something else that made my ears perk up. You said something about the hill. You're, you're working on trying to influence legislation or what, what is this about the hill?
Brianne Dressen: Yeah, so of course, obviously policy happens in Washington, right? Policy change happens in Washington. And as rusty as the wheels are of the political wagon, that's still the, the avenue that we need to go to make some of these bigger change, bigger changes happen.
So obviously at the top of the list is always research dollars, right? So we, we support any other organizations that push for research for dysautonomia and POTS specifically. That's a really big thing that we can [00:12:00] do, right? But then also we're pushing for diagnosis codes because it's, it's just kind of common sense if there is a syndrome that's new that doctors can log it appropriately in medical charts and not just so they can get reimbursed for seeing you, but then also so it's a huge database that can be analyzed and reviewed so then we can actually start understanding this.
The government of Germany is a perfect example of the importance of this in action, right?
They have implemented post vaccine syndrome type diagnosis codes, and of course that is on the guidance of the WHO. The WHO were the first people that put in post vaccine syndrome diagnosis codes and the Germany just followed suit, right?
So, but then the government of Germany was able to analyze all their medical records through their socialized system. And they found the signal for post vaccine syndrome in just in the data and insurance companies [00:13:00] there were able to identify it quickly. And so now they have research money that they're putting together.
They have Carl Lauterbach, who's the German health minister, is committed to making sure that ME CFS and long COVID and Post Vax Syndrome all are researched and supported and treated appropriately. So he's held several roundtables to learn about these syndromes that, you know, really became a thing in the public sphere because of the COVID era.
So yeah, so that's what we're hoping we can do in the U. S. Of course here it's, it's very tricky because there's a lot of, a lot of money in Washington from the pharmaceutical companies. There's a lot. So every time we go in, we literally, we're there for three days, and there's like 18 of us that canvas the different meetings.
We have about 30 meetings over 18 or with between 18 people over three days. And we always run into the pharmaceutical lobby in the halls, [00:14:00] always. So it's it's, and they're there all the time, right? So for us, we go once a year and we go and, and plead our case and, you know, get a little bit of commitment, but then there's always someone on the other side that's ready to push against.
You know, and I understand it. We, you know, we're going to impede their profits in some ways, but then at the other end of this, I keep thinking they really should love us because we are chronic care patients now, and they make so much more money off of us than they realize. But of course we aren't logged in the medical system, so nobody actually understands how expensive it is to treat patients like us.
So yeah, so that's what we're pushing for in DC.
Jill Brook: Wow. Okay. So I guess, I guess I didn't even realize so that the United States does not have a diagnosis code for post vaccine illness. They only got one for POTS a couple years ago, and I know that my [00:15:00] own cardiologist still doesn't use it or know about it.
And so basically there's no way to get an accurate count of how many people are in this situation.
Brianne Dressen: So there, there is a diagnosis code for vaccine adverse reactions.
There just isn't one for COVID vaccine reactions.
So, and we've seen it since COVID began, there's been a litany of long COVID diagnosis codes that have been added. So we do know for a fact that they can move faster than they have with the POTS diagnosis, for example. They can do it. So now we're just trying to figure out why, especially when other countries are using these diagnosis codes objectively, so.
Jill Brook: Okay, so I guess this sounds like amazing work on numerous fronts in just the past couple of years. Who all is making this happen? Who has the time? I mean, you had a full time job before [00:16:00] this, right? Who, who is the leadership behind React19? Do you have help from the government?
Brianne Dressen: No, the government. Yeah, not from the government.
We actually, it's a hundred percent volunteer. I don't take any money either. And the reason being is because I understand the substantial need of the people that we aim to serve. And so I understand if I were to take a wage out of that, then that means that someone can't get a medical grant from us, right?
So there's a hundred volunteers. All the time. So it's, it's a pretty big, you know, wheel. And these are just people that really care about other people. It's, it's an amazing thing to see this type of grassroots movement be propelled forward because it really is, it's so much of what I believe America is all about is, you know, people caring about each other, people taking care of each other, you know, all of those things.
So, but it's, [00:17:00] you know, it's, we have obviously an executive board. It was founded by medical providers and a clinical trial participant because they were the first to get it and the first to get injured. And we've since obviously expanded to a huge litany of people. We have a lawyer who's injured that's on our board of directors.
We have a whole board, a research board of injured scientists and, and medical providers. Doctors and nurses and others. So it really just depends on what of those avenues you know, we try to put people, you know, into government affairs that they have experience with that. And you know, in the advocacy program, people that have medical backgrounds.
Jill Brook: That's so wonderful that you had all these people able to come together. My understanding is that there's supposed to be a government program that was compensating people who had vaccine injuries and people cannot see you right now but that made you laugh. Why does it [00:18:00] take a hundred injured chronically ill volunteers getting paid nothing if we have a government program that's supposed to be doing this?
Brianne Dressen: The long and the short of that answer is the COVID vaccine injury program, compensation program, through the federal government is an abject failure. This program currently has over 10, 000 applicants in the queue. It has a rejection rate of 97%. It has paid out 11 people total. The total for all 11 has been 41, 000.
So that's an average payout of about 3, 700. So, if you are injured by a COVID vaccine in the United States, you will be entitled to a program that will give you 3, 700 if you are [00:19:00] of the 2 percent that are approved. Those 2 percent that are approved either have myocarditis or anaphylaxis. Those are the only two things that they are paying out.
And that's if you qualify with all of these other provisions set in place. So, the system is broken. That's one thing that we've really been trying to get DC to fix. The problem is, is the price tag to fix the program is very, very expensive. The reason being is because the vaccine injury compensation program, even before the COVID vaccines, is very antiquated and it was, it was on the verge of failure already.
So, the CBO score and that's the score that the federal government puts together when they analyze, you know, these programs and how they need to be reworked. CBO score is sitting at 15 billion to fix that program. So 15 billion in federal money is, is quite a bit, especially for this type of a taboo topic that [00:20:00] none of these guys want to talk about, right?
Because, you know, they've got special interests and everything else going on that is the sad reality of Washington. So it's tricky. But the, the reality is, is that this is why legal action is going to be so critical because the, the wheels of the Washington machine are so rusty. It's, you know, I'm not giving up on them, but at the same time, I've been struggling for three years to get them to do anything and they're not moving on anything, right?
And so it's, it's going to likely need to be forced through the court system. And because of that there's a legal firm that is doing two cases pro bono. And and they filed one in Louisiana and one in Texas, and these are federal cases. So these federal cases they are going after the constitutionality of the CICP program.
And that's the program that has the 98 percent rejection rate [00:21:00] and all of the, you know, that nobody seems to want to fix in Washington. And so the challenge for this is that essentially what these lawyers are asking is is it constitutionally, is it constitutional that these people's right to sue, and right to due process, have been replaced with a program that has no transparency, you can't have any legal representation, you have a year to file, and that's it.
Got a 98 percent rejection rate, like, I mean, the, it's, it's bad, right? Like, anyone, anyone with two eyes and a brain can see that this program is a failure, and everyone in Washington knows it's a failure too. So that's what they've exchanged our right to sue with is this, this program. So that's what those two lawsuits are for.
Jill Brook: Okay, so can I just back up a second and make sure that I understand the various puzzle pieces that are in place? We had an episode once before where we did speak about vaccine court, and so [00:22:00] for all of the vaccines on the childhood schedule, you cannot sue the manufacturer. Instead, you go to a vaccine court that the government handles, and there's like a 75 cent fee on every vaccine sold that goes to fund that court, I think.
So it's, it's something similar for the COVID 19 vaccines, but it's even more antiquated, right? It's like a different program that pays out even less.
Brianne Dressen: Yeah, so this is, this is why this whole system is messed up. They did not put the COVID vaccines onto the program where all of the other childhood vaccines are on that schedule.
That program's messed up too. It's, it's not very good, but you at least get legal representation, you can file for, for pain and suffering, you know, and a couple of other things, three years to file. This is a different program, so you're correct. So, and they knew right at the beginning of the pandemic that this is where [00:23:00] these COVID vaccine people were going to sit.
They knew that they were putting them on this program that was totally messed up. We've been telling them to move us over to the VICP and they won't.
Jill Brook: So, and you only have one year to file.
Brianne Dressen: Only one year.
Jill Brook: And you have to figure out your diagnosis.
Brianne Dressen: Yeah. Yes. You have to figure out, you have to find the right doctor under essentially the guise of darkness, right?
Through this underground network, if you're lucky that you can find React19, you can use our network of doctors, right? Get a diagnosis and then you can file. Kyle Warner, who's an injured professional mountain bike racer, he's been pushing a lot of stuff in Washington for us. And he's, he's fantastic at what he's doing, but he was injured.
He's got myocarditis, and he's got POTS, and he's been working really, really hard to, you know, recoup his life. And he filed 30 minutes after the year deadline, and [00:24:00] they told him no.
Jill Brook: Oh no, don't tell me.
Brianne Dressen: They totally rejected his entire application. That's how bad the system is, , and there's no, there's no, you know, there's no clear, you know, indicator for, for what you need to do.
It's just, it's a black hole. None of us know, and of course, I'm a clinical trial participant, so I don't qualify for that program anyway so it's, it's a mess. So, if there's one thing that if people want to do something that doesn't cost any money, it's free. It's very free to call your, your elected representatives and say, you guys, I just found out about this program, it's called the CICP,
and I would really appreciate it if you guys would fix this program, or at least move this over to the VICP because it sounds like there's lawsuits that's going to offend the whole program. And then they're going to, they're going to be met if, if this lawsuit succeeds we're going to be met with lawsuits, [00:25:00] right?
The drug companies are going to be met with lawsuits, and a lot of them. So, I don't think they want that. But more importantly, the bigger concern here is this, the concern of vaccine hesitancy, right? So vaccine hesitancy is at an all time high right now in the United States. And of course, you've got health agencies that are saying, wow, it's all the misinformation spreaders and it's like, I genuinely don't think that's what it is.
I think it's because there were so many people that were, that had a problem. And then they can't even find any kind of accountability. There's no compensation whatsoever. The right to sue has been removed. And then there's nobody in Washington that's even batting an eye to try to fix it. The reason we exist at React19 is because the government is not doing their job.
That's the only reason we exist. When we founded this, we wanted to make sure that in five years, we didn't exist. That was the entire purpose of what we're doing, is to make sure that the government started to do their [00:26:00] job, so then we wouldn't need to be doing what we're doing, and then we could go back to focus on our own healing.
So, once, once the government actually starts even committing to addressing these issues with compensation, diagnosis codes, research, then people will begin to grow more confident in the health agencies again. But as of right now, you know, they've got a lot of work to do to kind of restore that trust in the American public.
Jill Brook: Now my understanding is it's actually worse than that. You can tell me if I'm correct, but my understanding is that there was actually pressure from the government to the social media companies to shut down patients like you even just trying to find one another online and share treatment ideas and what's helping and talking and because there was my understanding is that in the legal records, [00:27:00] they acknowledge that it was not misinformation, that it was not necessarily any lies told or bad information, but it was true information about people's personal experience that was not good for their goals, and so, is it correct that some of like, for example, Facebook groups for patients disappeared? And that the thing that gets me, I, you know, I feel like, well if a social media company wants to have rules that say you're not allowed to speak up if you're injured by a vaccine, that would be one thing, but they should at least be forced to be transparent about that, so that when that poor patient who's suffering so much does put out their cry for help and everyone ignores them so they think, at least they know it's because the social media company didn't let their posts get seen by anybody.
It's not [00:28:00] because nobody cares. It's not because everyone thinks you can just, you know, go in a hole and die, which is what it feels like when you're in that situation. I, that, that really, really got to me that patients weren't allowed to find one another or talk about their experience and they were not even told why.
Is that, do I have that right? I hope I don't have that right.
Brianne Dressen: You, you have that 100 percent right. This is one of the biggest violations of our First Amendment rights that I have ever seen. And the only reason I know it is because I lived it, right? And everybody has seen the notices that came up on Facebook and, you know, and our friends got banned and then we're like, oh, I probably shouldn't interact with them because I don't want to get taken down too.
You know, it turned into a really big mess and the problem is, is that they were, like you said, they were impacting real people that were sick. And so I'm actually part of a lawsuit [00:29:00] because it was so bad through the NCLA, which is a, you know, kind of a spin off of the ACLU actually, and they approached several of us a couple of years ago, and they said, hey, this is really bad we have confirmation that the White House officials themselves were, like you said, they said that they demanded, so it's not like they were, like, nice about it, making it a nice request, they were co coercive, they were being very aggressive with the, with the social media companies, and they said it very clear.
That they needed to suppress true and factual information that, for whatever reason, could cause vaccine hesitancy. The reason I'm part of that lawsuit is because Stanford University was involved in that. So Stanford was actually, essentially, cyber stalking people. And they were collecting intel on
all things that could cause vaccine hesitancy. And they were [00:30:00] logging that and then they were submitting briefing, these briefings to the White House every week. And then the White House was using these briefings to then instruct the social media companies what to say and what not to say. And unfortunately my name and exactly what I did like weekly was in a couple of those reports that were submitted to the White House.
And I'll say that there, it was big reality check in this to see my name actually on those documents and to see what they were doing with that information.
Jill Brook: Whoa. So maybe this is a good time to bring up, tell me if I have anything wrong here, but you were a mother and a preschool teacher who volunteered to be in the AstraZeneca vaccine trial.
You were injured and it was like immediately after one shot, you started talking about this, you got censored, and then the government started [00:31:00] tracking what you were saying every week? Like, little you just trying to feel better?
Brianne Dressen: Well, this is, this is what's kind of funny about that. So, yeah, yeah, exactly.
So, I participated in the clinical trial. So, like, when, when COVID hit, I was so, like, I naively believed that this was going to be our generation's World War II moment, right? I genuinely believe we are all going to come together, lift each other up, support our communities, you know, do what needed to be done to get us all out of the pandemic.
Like, I was all in. So it's like, my, you know, my place in this, my part, you know, and I can show my kids what resilience is, you know, is to just go and roll up my sleeve and get my shot. I had never had any problem with any previous vaccine. I had collected over, I'm not even kidding, I had collected over, because at the time I was healthy, I collected over a thousand N95 masks and donated those to the local hospitals because they had the mask shortage.
You know, I was part of the [00:32:00] solution, and I still do genuinely, genuinely believe now that I still am an active part of the solution, just in a way I didn't even know needed to happen. So, with that being said, when I got injured, I kept it totally quiet, totally quiet. I didn't even tell my preschool parents.
I just said, I'm, I've got a really severe disease going on. I don't know what it is, right. And I didn't say anything on social media until I want to say it was end of June, first part of July. So I was injured in November, 2020. So that's seven, eight months into it. And you know, after several months of reaching out to the federal agencies, you know, reaching out to the drug companies and it was just complete silence that, you know, we needed to up our game and, and finally go public.
So as soon as I went public, Stanford was there watching and they were, they were there watching and [00:33:00] ready to pounce. And so the second I went public, they were there.
Jill Brook: So, wow. Wow. Our, our audience is probably wondering what kind of reaction did you have short term or long term and how are you doing now?
If you want to quickly share or if you don't want to, I understand.
Brianne Dressen: No, I think it's important for people to know, you know, my reaction according to the research that we've done at React19 is actually, it's pretty common. It's the most common constellation of symptoms that we end up with, right?
There's variants here and there, but in Yale, the research that we're doing at Yale shows a similar thing. So, within an hour of my shot, I started having tingling down my arm, and same arm as my injection, and then it spread to my other arm. I had blurred double vision. Extreme sensitivity to light, extreme sensitivity to sound where I have the earplugs in the ears, you know, earmuffs over the top.
The sound of running water was too much for my [00:34:00] ears. The sound of my dog panting was too much for my ears. The sound of my husband's pants swishing as he walked was too much for my ears. So at that point, with the heart rate fluctuations, the temperature dysregulations and you know, everything else that was going on, it was a list of like 20 something symptoms, right?
I landed in my bed in the dark, totally isolated. I was that way for, you know, a couple of months at least, and then I started trying to rehabituate. So, my limbs got weak they were super heavy, numb, and the tingling, the paresthesias, you know, spread all over my body, head to toe, and now as we're talking, you know, my earplugs are out, my eyes do not need sunglasses anymore, and a lot of that was very meticulous,
slow, gentle rehabituation. I have two very small kids, and they needed their mom. And so, I wanted to figure out how I could [00:35:00] get back to being able to even literally be in the same room as them. So it was literally, I would come out of my room, and I would sit on the couch, you know, because my heart was going nuts.
And and I'd have my earmuffs over my ears with my earplugs in, and I'd sit next to my kids, and they'd be thrilled, right? And I'd literally sit there for five minutes, and then I'd, it would be enough, and then I'd go back and rest. And then, the next day, I would go do that again, you know, and the next day I would do that again.
So it took me months of, of doing that. But then, at the end, I could take the earmuffs off, and then I, actually, how I did it is I took one earplug out, and so I rehabituated my left ear first, and then I took the right earplug out, rehabituated my right ear, and I noticed as the day went on, as my, you know, capacity for any stimulation wore down, right?
So at the end of the day, I would always have to [00:36:00] have both earplugs back in, the earmuffs back on, and dark, quiet, you know. But it was through that meticulous, slow process that I was finally able to restore my tolerance. Still when I go to the grocery store now, I sit in the cute little buggy, which if anybody doesn't do that literally, if you have a problem and you feel like crap after the store, please go in and just take the little motorized scooter that they have at the stores.
Sit your butt down in the little cart and enjoy your day. You don't have to use your spoons walking around in there. Anyways, so, yeah, so I put the earplugs in my ears and I just enjoy going to the store with my little scooter, you know, and push it around. But, at the time, I didn't know what was going on in my body.
I didn't know that it was POTS. One of the first diagnoses I got was finally hyperadrenic POTS. So it was hyperadrenic at first, and then, just like a lot of long COVID type patients, it's moved to just straight up POTS and [00:37:00] dysautonomia. I recently have been able to be cued up with Brent Goodman, who's a POTS expert who recently left Mayo.
He's now at a totally independent clinic in Utah called the Metrodora Clinic. There is Anne Maitland, who is a MCAS expert there, which is, everybody knows is very strongly correlated with this, so, it's kind of a, kind of a dream team for me, you know, especially because I've been sitting for years with this, so, they've been able to run all kinds of tests that even the NIH, they didn't even run, so I now have a diagnosis of small fiber neuropathy, severe POTS, dysautonomia, and I have they just diagnosed me with autoimmune condition that's ill defined, I can't figure out what it is, but they've already been able to put me on a treatment plan that I'll be starting soon to try to stop the progression of my neuropathy, because the neuropathy is documented that it's gotten worse over the last three years.
The POTS has gotten better. [00:38:00] It's not great, but at least I'm not passing out, right? So I'm not passing out anymore. The food sensitivities are the same, but I'm smarter now, so I know what not to eat, right? So I've cut out dairy, gluten, corn, soy. Those are like my top four that are just a full on hard pass and a lot of vegetables.
And if people are worried about, you know, probiotics, I react to all probiotics I've tried. But I've learned through my research and through my own experience and confirmed through the GI testing I just got done at Metrodora that my, my microbiome has recovered from the initial upset and that's been without probiotics.
And so I, I think it's probably because of the massive amount of vegetables I've been eating. So, anyway, so if that's a clue for anybody. But I also, I'm still taking, you know, Low-Dose Naltrexone. I'm still taking Ketotifen. I'm still on IVIG, SCIG. I'm [00:39:00] still, you know, taking PEA
and that helps a lot with nerve pain. I was shocked actually that I could get something natural that could help with that, right? And several other things, you know, so it's still this, just like everybody else, it's still this, you know, the second I wake up, it's alright, take some medicine and, you know, and then, okay, how many spoons do I feel like I even have today?
Okay. Okay, today feels like a five spoon day, so I can take a shower, right? But I still can't sit up for a long time, so right now we're sitting, you know, I'm chilling on my couch, because I'm a professional couch potato, and I'm proud of it, and it's totally fine, you know, and I, it is what it is, right?
But I have my legs tucked up underneath me, and if they're not tucked up underneath me, then I have them extended on a, on a recliner out in front of me. I have my compression leggings. I drink, you know, like a camel in the Sahara with, you know, liquid IV, salt tabs all of the things but most importantly the mental impact is [00:40:00] one thing that I've learned over the years is so important for people to remember to give yourself grace,
and love and boatloads of forgiveness. And I know it's hard, especially if you have family members in your home that are not supportive, but save yourself the guilt trip. It's not going to do anything for your physical well being. And you, you deserve better. Every, every person that's dealing with this, we didn't do this by choice.
You know, we all want the opposite, you know, and so with that being said, so we need to give ourselves the grace and the love and the self compassion to be okay with what our body is, not necessarily what our body is doing, but to be okay with our self. Our worth is not our body situation, right? Like our self worth is not, it does not have to be tied up in what our body is doing.
Cause every single person I've met that has this, they're the most [00:41:00] beautiful, genuine you know, just caring, amazing people I've ever met in my entire life. That's so amazing. Yeah. Yeah. Right. They're just, and for that, that means that these, the people that are dealing with these complex chronic illnesses, they are the true gems of the world.
They really are. So, and that's, you know, that's one thing hopefully that people can take from my experience.
Jill Brook: Wow, you know what's striking me is that you have only been in this world a few years, but boy did you get up to speed on everything so fast. The whole situation and it sounds even more than most of us, the legal side of it and the political side of it and the emotional and the treatments and the, ugh, everything.
I want to be really mindful, we could just talk forever. There's so much more to say, and I know, you know, I think you had slid in there. I think that NIH was helping [00:42:00] you at one point and ghosted you. That's probably a whole nother thing. I know you have another legal situation. I don't know if you feel like talking about anything with that, but I think you were not treated very well by the company that you volunteered to help.
I don't know if you want to say anything about that. And then I just thought it was trending on
Brianne Dressen: Twitter, apparently.
Jill Brook: Yeah. And so I guess I wanted to invite you to talk about anything you want to talk about. And then I thought maybe we could just end on a hopeful note with some of the other research details because I think you have some papers coming out and you have people that are doing good things and I don't know if there's any findings you're allowed to share with us yet or if you can tell people where they can follow your research but I just open it up to you to any or all of that.
Brianne Dressen: Okay, we'll, we'll do super high level. So, yeah, so, yesterday I filed a lawsuit against AstraZeneca. This is the first [00:43:00] COVID vaccine injury lawsuit in the United States, and it likely will be the only one because of the the PREP Act protections and the CICP program that we talked about earlier. But with that said, it's, it's incredibly important for people to understand that there are two lawsuits that are pushing to try to restore people's right for some kind of accountability, whether that's a federal program revamp or, you know, allowing people to sue directly.
The reason I am able to sue directly is because of contract law. I signed a contract with AstraZeneca when I got my shot, before I got my shot, and they're supposed to pay for any costs as a result of research related injury. And it literally says so long as I didn't cause the injury to myself, which I don't think there's any human possible way that they could ever prove that somehow, like, what would I do, like, drink acid to cause a progressive neuropathy with severe dysautonomia?
[00:44:00] Like, anyway, so, obviously, it's a research related to injury and the complaint is online. If people look up Dressen v AstraZeneca, they'll find it. But the, it's, we gave them ample opportunity to help us. And the most we got was more than a year later, we got a hastily written settlement for 1, 200.
And that was like a final payment for like all, you know, absolve them of all responsibility and all obligations. I wish that I could sit here and say that the situation was different, but the truth lies you know, totally in this court where AstraZeneca, the second I was injured, they were, poof, gone.
Gone. And they have, they have stayed there. So now it's been a long three and a half years trying to get them to do anything and they've kind of left us no choice but to move forward with this. And so, [00:45:00] yeah, so we filed that yesterday. It's all over in the news in the UK right now. Of course there's a class action going on there against AstraZeneca as well.
And a lot of people that have lost loved ones and so on and so forth. And I know those families personally. And just like the POTS patients, they're really just genuine, you know, people that their hearts have been broken by this process. And so I'm hoping that I can stand in solidarity with those families and kind of provide some backup for them so that they're able to accomplish what they need and what they deserve as well.
So that's the latest on the legal front. And as far as research, so this is exciting. So yeah, so we were able to co author on this paper with Yale. And it's kind of like an introductory paper on what post vaccine syndrome looks like, right? And it's like classic dysautonomia, right? So, we're working on a second paper right now, so be on the lookout for that to publish.
But in, there's a second [00:46:00] paper that we're working on right now. The Akiko and her team are really looking into the immunophenotyping to compare long Covid to Post Vax Syndrome. There is a signature between the two, albeit it's there is a significant overlap between the two syndromes, but they're is a higher prevalence of a couple syndromes, one way versus the other.
So, we're excited to see that publication make it to pre print. We're working with all of all of the very bright minds over at Yale to make that happen. And there's a third, a third survey that Harlan is working on, that we're working on, and then actually there's a fourth one, where we have all of the patient data that the advocacy organizations globally have collected.
And we're working on putting a paper together for Yale on that as well. So, and then of course there's, I feel super bad, but I'm just trying to rattle it off.
Jill Brook: Yeah, yeah.
Brianne Dressen: Of course there's our, our research study at React19 in partnership with the University of Maryland with Linda Wistella there. If you go to react19. org [00:47:00] slash study, it's a super simple address, then you can see the terms to enroll. Basically, if you've had any reaction whatsoever to a COVID vaccine, you can enroll and fill out the survey, and it will, it wants your, it's involved, so I would encourage all people to pace themselves, it takes 90 minutes, so, you know, and you can save your progress, so go in there and you save your progress, take a break, come back, you know, a couple days later and, you know, plug in some more information but the real reason we're doing that is because we really want to figure out what solutions are working because it's all over the board, right?
And so we want to see, is nicotine actually working? Is that actually a thing? Is it hyperbarics? Is it IVIG? Is it, you know, is it fasting? All of the, you know, hundreds of different protocols that people are trying, so. Yeah, so that's what's happening on the scientific front, and then of course we have a, a seed grant of 100, [00:48:00] 000 that we're going to be issuing to three small research programs.
One, actually the majority of that money is going to go to a dysautonomia POTS geneticist, so stay tuned for that because this, of course, is near and dear to my heart, you know, just because it, I'm dealing with it, but also because it's reflective of such a huge group and portion of our membership. And so we want to make sure that we're prioritizing getting research done and generate that scientific, in the scientific literature, that we're generating that type of content that's really going to shine a light on how people are dealing with these type of syndromes.
And, and why, because there's a huge gap in that, you know, just in general. And yeah, so that's what we're working on.
Jill Brook: Oh, that's it?
Oh my goodness, well, Brianne Dressen, you are a [00:49:00] powerhouse of progress, and I'm sorry that you got thrown into this world, but wow, are you getting stuff done. Wow it's been an honor to speak to you. And I hope things go well for you personally. Thank you for everybody that you are working to help. And we look forward to maybe getting an update as all of these various projects keep, keep going on their way.
Brianne Dressen: Yeah, absolutely. Well, it was super good to be here. It's always fun to be able to talk to my POTSie buddies, just saying.
Jill Brook: Okay, well thank you. And listeners, that's all for now. We'll catch you again next week, but in the meantime, thank you for listening, remember you're not alone, and please join us again soon.
