Episode Transcript
[00:00:00]
Jill Brook: Hello fellow POTS patients and lovely people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we are going to discuss a new published article called Female Reproductive Health Impacts of Long COVID and Associated Illnesses, including MECFS, POTS, and Connective Tissue Disorders, a Literature Review.
Our guest is one of the authors, Dr. Leticia Soares, PhD, who is going to tell us about this article and about the Patient Led Research Collaborative, which is doing some innovative things to help speed up research today. Dr. Soares, thank you so much for being here today.
Dr. Leticia Soares: Thanks for having me, Jill. It's great to be here. Thanks for listening, everyone.
Jill Brook: Well, we are really excited about your article, and it's a little bit funny, though, because before we start today's discussion, I just have to say that we are an all volunteer podcast [00:01:00] here, and so our podcast editor is my dear husband, who, to my knowledge, has never spent any time before hearing about female reproductive issues, and he will probably be blushing the entire time he edits this, so I just want to say from the POTS community, thank you, love.
One more unintended bit of service to the POTS community because he's a nice guy. Dr. Soares can you start by telling us a little bit about your background, your work, and how you became a Long COVID researcher?
Dr. Leticia Soares: Yeah, absolutely. So I'm a biologist by training. I have a master's in ecology, and I worked with disease echoepidemiology in my master's, and I have a PhD in PhD in biology and before getting sick, most of my research experience always being centered around infectious [00:02:00] diseases and trying to understand through an angle of ecology and evolution.
And I always studied disease systems that involved pathogens that either affect people and wildlife or pathogens that are closely related that affect like wildlife and people. Not quite the same, but we can use one or the other disease systems to understand the disease itself. So I spent many years studying malaria in birds.
Jill Brook: Oh!
Dr. Leticia Soares: Yeah, and for about five years, just before the pandemic, I was studying a lot malaria in migratory birds because migrants are like endurance athletes, so I was really interested in understanding how [00:03:00] basically they fly while diseased, you know, and especially with a pathogen that demands a lot of, you know, energy and puts such a a physiological challenge on the host and how this migratory movement ended up, you know, playing a role in disease distribution across, you know, just very broad geographic scales.
So that's when I got interrupted by COVID 19. I was doing my postdoc. I was in London, Ontario at the time. And I got sick in April 2020. My first symptom was I had a migraine that woke me up in the middle of the night. Like, it just never happened to me before. Just in the middle of the night, just, boom, just [00:04:00] woke up.
Just this thing, awful migraine. And I just, I wouldn't recover. I simply just wouldn't recover. And just the acute phase of COVID, for me, it was about 30 days long. So just that at the time was counterintuitive when compared to what, you know, all the media, the health authorities were saying, what they were saying, you know, to expect of the, the disease course.
And I just felt just very lost, you know, just didn't know what to do, providers also offered very little help and guidance just, just sitting in wait and, and just feeling awful. So that's when I joined a support group BodyPolitic support group online. And I started finding answers [00:05:00] there and just found a community of people who was experiencing exactly the same thing that I was experiencing and I was, whoa, you know, I just, I just felt just so seen at the time.
And that's exactly where Patient Led Research Collaborative was born. And now I am a member of Patient Led, and I'm a member of the leadership and I'm a researcher with them since 2021. And just since that beginning, I, I just turned to the literature, you know, just trying to read and understand everything that I could and my energy and my cognitive capacity could allow.
And it just helped me, you know, just both emotionally and, and also physically. So, what really helped [00:06:00] me survive is, in a way.
Jill Brook: Yeah, so is the Patient Led Research Collaborative, I mean, from the name of it, I can kind of guess what it is and what it does, but maybe you could just say a little bit more about that. Like, I think I might have seen on X slash Twitter that you have a journal even for patient developed hypotheses. Like, this sounds pretty cool.
What is this Patient Led Research Collaborative?
Dr. Leticia Soares: Yeah, we are, we are pretty cool. We are, we are a group of Long COVID patients and patients with infection associated illnesses and caregivers as well. We want caregivers who do research in these illnesses, who support , researchers who are doing studies in these illnesses and we also [00:07:00] advocate for improved policies and healthcare practices for patients living with these conditions.
We are about, we are more than 50 people now.
Jill Brook: Wow, that's fantastic. And you all have science backgrounds, right?
Dr. Leticia Soares: No. It's a multidisciplinary group. We have scientists, we have specialists, like people who have like policy, political science background. We have people who have background like, you know, in media and video editing. Just everyone brings like a little bit, you know, of their knowledge and lived experience into the game.
So it's, it's very diverse in terms of types of expertise that each member brings.
Jill Brook: So if we kind of move on to the article that you helped [00:08:00] publish about women's reproductive health issues in long COVID, POTS, ME CFS, EDS, etc. It's a wonderful article. We're going to put it in the show notes. I always love an article that has a great figure that kind of summarizes it.
So your figure one is that awesome figure that I would recommend everyone check out if they're looking at it. But yeah, it talks about the whole broad topic of reproductive health issues intersecting with these conditions. It points out a couple interesting things that I was wondering if you could start by commenting on.
It starts by pointing out that these disorders are most prevalent in premenopausal females and that Long COVID might also be overrepresented in the trans community. I have not heard other people talking about this and I guess I don't know enough about hormones [00:09:00] or whatever to know what this means. Can you just kind of talk about that and what it means to you guys?
Dr. Leticia Soares: For sure. Yeah, so we have robust evidence showing that female sex is a risk factor for Long COVID and that holds true for other infection associated conditions like myalgic encephalomyelitis and POTS too. That is not to say that men cannot have these conditions, that is just to say that women and people who menstruate are just more likely to report these conditions.
And we also have we observe just like an age effect. That is likely linked to an [00:10:00] endocrine factor, right? So it's very interesting that we see kind of like this this peak this that Long COVID is more common in premenopausal women. And it becomes like a little bit less common like in older people.
And when we look at the evidence in myalgic encephalomyelitis, for instance, if you look at the rates of the prevalence, the prevalence rates of ME CFS in the pediatric population, it's super interesting because before puberty in patients below 12 years of age this prevalence is comparable between males and females.
But then after puberty, whenever it's a little late, like in adolescence, you see that factor of the female sex [00:11:00] being the risk factor starts to hit, and then you start to observe that the prevalence is higher among females. So you'll likely see that whenever you have like the hormones associated with sex development after puberty they start to hit and interact with metabolism, with the immune system, these risk factors start to emerge. So we have this interaction of sex and endocrine factors, they're playing a role as a risk factor for these illnesses, which is, I think it's quite interesting.
Jill Brook: Yeah, that's interesting because we have also interviewed a POTS pediatric cardiologist, Dr. Jeffrey Boris, who has mentioned seeing POTS actually improve in some adolescents who transitioned from [00:12:00] female to male. And so, it's only, I think, you know, a few people, certainly not enough to maybe really consider it a data set at all, but it sounds like there's just some, some hormonal issues that are must be involved that people keep noticing.
Dr. Leticia Soares: Right, right. And there is also with POTS, there is I think onset of POTS is more likely during adolescence, right? There is like that little peak during adolescence so we definitely see this interaction between hormones that is linked with age because of development so endocrine factors and sex and risk factors of of these illnesses, which is, I think it's fascinating.
But it's hard to understand exactly, you know, hormones are just so complex and there's just so much going on there. There's so many too, [00:13:00] right? And it's just that they play a role with so many tissues, so many processes. One thing is just to pinpoint, okay, this is involved in this disease process, but exactly how, what is going on here exactly?
Jill Brook: I was afraid you were going to say that. That was going to be my next question, actually, is, is anybody looking at it and are they figuring out exactly which hormones are the relevant ones? And you mentioned they might be interacting with metabolic processes, and so it sounds like there might be several layers of complexity. And to your knowledge, is anybody looking at this or they're just noticing it for now?
Dr. Leticia Soares: I think that's an area that it's very under researched. And it's something that really needs more [00:14:00] attention. Because I feel like we could potentially improve our capacity for more informed, you know, clinical decision making if we better understand what's going on with this hormonal processes.
But I don't think there is much going on there unfortunately but that's definitely something that needs more attention.
Jill Brook: Yeah, you know, my mind is racing thinking, wow, we should just do surveys, For example, to see did people on certain types of birth control pills get higher or lower levels of Long COVID, or people who are on the bio identical hormones for menopause. Did they have any protection or risk from that? And I wonder if some surveys could go a long way in the beginning.
Dr. Leticia Soares: Yeah, I really think that we, we need like my, my dream [00:15:00] is to have this long long term longitudinal study of patients, so look at patients, okay, we have patients premenopausal now, and then track patients when we go, they go through perimenopause, and then they go through menopause, because we have all this conflicting evidence.
Okay, some patients have a really hard time during menopause, other patients improve during menopause, and generally, everyone feels terrible during perimenopause, but what is, what are the disease phenotypes that, you know, are dividing these patients after they hit menopause, you know? Who are the patients that feel better?
Who are the patients that feel worse? And what is it that we can do for them? And if we track these patients? [00:16:00] Since they are premenopausal we're gonna be able to understand this disease dynamics over time a little bit better and understand just, you know, how, how this hormones play a role as people age and, and go through this, this chronic diseases.
Jill Brook: Yeah, so in your paper, you talked about menstruation and how it can affect Long COVID and vice versa. Can you talk about that?
Dr. Leticia Soares: Yeah I think, it's, menstruation is, is, was a big driver of why that paper happened because it was something disruption in menstruation was something that we saw in support groups. It was something that I experienced myself as a long term COVID patient. And it's very debilitating, and I just 100%, [00:17:00] just 10 out of 10 times, I crash during my period, after my period, it's just an awful experience, very debilitating.
And there's always just some unpleasant surprise in terms of infections, just something. Stuff with my immune system that goes haywire there. So it, it always makes me think, you know, that there is something that happens there that just could affect like, there are multiple pathophysiological processes behind Long COVID.
And if what goes on during menstruation interacts with this pathophysiological processes, it could alter, you know, this course, like how patients feel. And if you think of like someone who experiences PEM depending [00:18:00] on the severity of post-exertional malaise if you hit a triggering threshold that is just higher, you know, than whatever just abstract threshold that is, it really could alter the course of illness completely.
Just, just thinking through, a PEM perspective, right? But you also have the disease itself, you know, all these pathophysiological processes affecting the menstrual cycle itself, you know, causing irregularities, causing like the clotting issues. So it's, it's a two way kind of cause and consequence that we should think about.
Jill Brook: Now, your [00:19:00] paper mentioned that Long COVID patients reported early menopause at three times the normal background rate. Do you mind saying first of all, like what that means, like what's defined as early menopause, and what does that mean, or do we know, or any, any thoughts on that?
Dr. Leticia Soares: Right, so we have two pieces of evidence linking early menopause with Long COVID. One, it comes from our survey, a patient led survey that we found I think it's out of like about 900 respondents, 3 percent reported early menopause, so defined it as menopause before age of 40. And then the other piece of evidence is just a set, I [00:20:00] think it was four studies, clinical reports on premature ovarian failure in people with Long COVID.
So premature ovarian failure is a decline in ovarian function before the age of 40 as well. So we are looking at kind of just two lines of evidence of just the same type of, you know, major event. And in all of these patients, very young patients, mid 30s, there was a patient that was in her 20s. These patients had premature ovarian failure. So combining the evidence of premature ovarian failure and the evidence with our survey, [00:21:00] we can infer that I think that suggests that there is a higher risk of premature menopause among people with Long COVID. And also when we look into the literature of myalgic encephalomyelitis too, we have reports of early menopause, premature menopause.
And here is the same, it's sort of the same issue that if we had been tracking people with ME CFS to understand exactly, you know, are these people, have these people been ill for a long time? Are they severe? Do they have POTS? Do they have EDS? We could understand better what drives the risk of premature [00:22:00] menopause and infection associated illnesses.
And we could have had better answers now that we look at people with Long COVID having these issues. One thing that I find concerning is that we don't know in this literature reports how long the people with ME had been sick before they reported premature ovarian failure and premature menopause.
But in the case of Long COVID, we can assume that it happened pretty fast. Right? So we are not looking into someone who had been sick for like a decade and entered early menopause because of that. So I, I, I find that's, that's very concerning.
Jill Brook: Yeah, and you know what's going through my head as somebody [00:23:00] who doesn't want to have kids, what goes through my mind is, oh, well, why should we care? It sounds kind of convenient to have early menopause. Because many of us have our symptoms feel worse, you know, close to our periods anyways. And so, hey, what's the downside of that?
But I think there are downsides, right? Like bone density, heart health, like why if we have like some young people listening who think it sounds nice to go into menopause early, why, why is that actually not the case?
Dr. Leticia Soares: I mean, if you just, just think simply about estrogen, for example, that is produced by the ovaries, when you have a decline in ovarian function, you're going to produce less estrogen, so when you enter menopause, your estrogen levels will decline. And estrogen [00:24:00] is just involved in so many processes in the body including endothelial health. It is, it is involved in, in coagulation, in clotting but it's also involved in anticoagulation.
It's just, It is very complex. So, there are it's just a balance of the body, you know, that needs to be preserved, like the disruption of the homeostasis of a system before the predicted time, you know, that needs to be really watched out, I think.
Jill Brook: So, is there anything understood yet about why the trans community might be overrepresented in the Long COVID [00:25:00] population?
Dr. Leticia Soares: Yes, the piece of information that the best evidence that we have about this, about this higher prevalence of Long COVID among trans and non binary people is from the U. S. Household Pulse Survey, and it could be related to the endocrine factors, but it could also be related to social determinants of health.
Systemic factors like associated to, you know, difficulties accessing proper health care lower chance of, you know, having paid sick leave things like that. So it could be a combination of factors there that we are looking into in the case of the trans population. So we don't know yet that's the answer, yeah.
Jill Brook: And then what about other possible underlying mechanisms for all of the Long COVID?
Dr. Leticia Soares: So there is [00:26:00] there's microclots, neuroinflammation, endothelial dysfunction, viral persistence, you have dysfunctions in the microbiome, you have reactivation of latent infections or viral infections. That's, that's a huge factor. And this is just a sample of just a, a few of the mechanisms of the major mechanisms that there is a ton of evidence already for, and I think what is important when we think about, for example, what could be causing premature ovarian insufficiency, for example, is that it could be more than one of these factors. We could be looking into compound [00:27:00] mechanisms that could lead to this outcome, so it's complex. And I think it's just, we really need to invest in, in better studies for reproductive health.
Because in general, we know, we know, like, from patient perspective how debilitating just, and it's, it's just, just from the menstruation side, it's just every month, you know, if you have a regular menstrual cycle, it's every, every month, it's just terrible. It's just terrible. You're just terrible, terrible, and you're just out of commission for at least 10 days.
Jill Brook: Yes, and I, I want to kind of give a shout out to I want to and your authors for your figure one in your paper again, because it summarizes the female reproductive issues that have been linked to our cluster of chronic diseases, the Long COVID, POTS, ME [00:28:00] CFS, hypermobility spectrum disorders, and you list a lot of issues going on.
We, you know, we covered menstruation and menopause. But there's a lot of other stuff that we don't have time to get into, but your figure does a really beautiful job of listing which issue has been linked to which of the conditions, right? So for example, in there, I think it links like Polycystic Ovarian Syndrome to POTS.
And there's some pregnancy related issues in there, I think, especially related to hypermobile Ehlers Danlos Syndrome. And you guys really covered a lot of ground. Is there anything else that stands out from figure one to you as being kind of, I don't know, the more interesting or more important things that you noticed in there?
Dr. Leticia Soares: To me, what I find first when I [00:29:00] look just at just the overview of this figure is just how impactful as a whole, these issues are in reproductive health, and how little research we have. And it's, it's absurd, and it needs to change. It needs to change. And that's something that we can no longer uphold.
That's something of the past. So it's very evident how impactful that is in the life of patients and how much clinicians need to be aware that these patients and so a patient with Long COVID, a patient with ME CFS, POTS, EDS, or a combination of these conditions, they need to be screened, [00:30:00] you know, they need to be, red flags are there and there needs to be just personalized, you know, like clinical care because of the risks of all of these conditions there for patients.
So we really need to, I think, improve research to understand all of these complex mechanisms there. And we also need to improve clinical care for patients because this impacts, uh, quality of life. Very, very strongly for, for, for this patient.
Jill Brook: I have one more question, which is that I have not seen research to back this up, but just among the patient populations, you hear that patients and doctors are sometimes playing around with with birth control pills for POTS patients, for example, so that if they feel worse around their [00:31:00] time of menstruation, they can just get rid of menstruation and make that not happen.
Now, my understanding is that that might have, you know, trade offs for things like blood clot risk, and so this is not something to do lightly without talking to your doctor. Also we sometimes hear about how Mast Cell Activation Syndrome patients might be playing around with hormones.
Because they think that that is, you know, helping to keep their mast cells from degranulating. And I have not heard about anything in the ME CFS community or the Long COVID community. Is there any sort of like word on the street that people are having success with this or that playing with hormones, or is it still pretty much just everyone trying to figure it out?
Dr. Leticia Soares: Jill, this is, this is one, one part that I, I have not heard much about it. And [00:32:00] I, I truly don't know much about it. From my perspective is, there is something that we need research, especially in the side of the estrogen based birth controls, especially with the evidence that we have with microclots. We need to understand what happens there.
Jill Brook: Is there anything else you think our listeners should know about this?
Dr. Leticia Soares: I think that if people with Long COVID with any menstrual irregularities, if you're experiencing the symptoms, I encourage you to talk to your gynecologist about it. I think you deserve help. And that's I [00:33:00] think I always encourage people to seek help. And just don't wait.
Jill Brook: Okay, perfect. So we'll put all the links in the show notes so people can find them. And we just thank you so much for your time and your wisdom. And it sounds like you and your cohort at the Patient Led Research Collective are donating a lot of your time to do this good work, and I'm sure investing a lot of energy that, you know, is of high value these days.
And so, we just can't thank you enough much, much gratitude to you from the whole, the whole community.
Dr. Leticia Soares: Thanks for having me. Thanks for reading the paper. I love, I love hearing that, it's amazing.
Jill Brook: Oh, good. Well, okay 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.
