93 - Dr Viki Male - Research into Long Covid & Menstruation

Episode 93 of the Long Covid Podcast is a chat with Dr Viki Male who is doing research into Long Covid and menstruation, in collaboration with the app Visible, as well as the Wilco study. We chat about the 2 different studies she is involved in, and how they will hopefully bring together a load of data to give some answers.

This study is a really cool example of a collaboration between people with Long Covid and researchers, so it really demonstrates that people's voices are being heard.

If you're interested in the Wilco study (where you give blood) please email:  altmannlongcovidstudy@imperial.ac.uk

Frontiers paper on Long COVID and similar illnesses on female reproductive health

The study on the Visible app will go live here on 20th July 1pm (UK time): makevisible.com/join-research

3 studies mentioned:
Paper on MS & reproductive health

Paper on IBS & menstrual cycle

Sex hormones as immunomodulators in health and disease

For more information about Long Covid Breathing, their courses, workshops & other shorter sessions, please check out this link

(music - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter  
Hello, and welcome to this episode of the long COVID podcast, I am delighted to welcome my guest today Dr. Viki male who is here to chat about her research into long COVID and menstruation, which we know can be a huge factor in many with long COVID. So this is going to be really interesting. So a very warm welcome to the podcast.

Viki Male  
Hi, Jackie. It's nice to be here.

Jackie Baxter  
Thanks so much for joining me this morning. So to start with, would you mind just saying a little bit about yourself and what it is that you do?

Viki Male  
Yeah, so my day job really is looking at immune cells in the lining of the uterus. And I'm really interested in how those are involved in making sure we can have a healthy pregnancy. So how they help the placenta to implant at the beginning of pregnancy and how they might help birth to happen at the end of pregnancy. But as part of that, they cycle during the menstrual cycle, so that they're ready at the time that you know, you might be having an embryo implanting, to kind of help that embryo to implant. So I've also always had this interest in the immune system and the menstrual cycle. 

But kind of during the pandemic, I ended up like so many scientists, going in different directions. And one of the directions that I went in was, you know, a lot of people started to say, Oh, when I got the COVID vaccine, I noticed that it changed my periods a bit. And it was really difficult to know, because we don't actually talk probably as much as we should about our periods, about whether that was, you know, a real difference that was happening because of the vaccine. Or if it was just that people were being a bit more aware of their periods. And so it was kind of, you know, a bit of an illusion. 

And so I did some work to find out if there really was a change to periods associated with the vaccine. And the short answer to that is that about 1% of people will have a later than usual period in the month that they're vaccinated, and about 4% of people will have a heavier than usual period in  the month that they're vaccinated, compared to an unvaccinated group. But importantly, it goes back to normal really quickly, like the next month. So that's kind of what took me into period research in the context of the pandemic. 

But what I'm here to talk about today is long COVID and periods. And that's something that I got into because someone who I know your podcast knows, Gez Medinger got in touch with me, after he'd read some of my vaccination and period work. And he was like, you know, what, all the people that I talked to as part of my long COVID stuff, a lot of them are noticing the effects of long COVID on their periods, effects of their menstrual cycle on their long COVID. And that's something that maybe it will be interesting to research. 

And he got in touch with me about 18 months ago, and it has taken us about 18 months to get set up and to get ready and to start answering those questions. But literally, just in the last couple of weeks, we've got to the point where we have all the ethical approvals we need to get started answering those questions. And so I'm hoping I'll be able to tell you a little bit more about exactly what we think is happening, why, and how we hope we're going to find out. 

Jackie Baxter  
Yeah, I mean, this is so exciting, isn't it? I mean, I think you kind of touched on it. And it still seems to be a little bit of a taboo subject, doesn't it? Even in what are we 2023 now, you know, I'm sure we talk more about it than we used to. But you know, it's still that kind of like, sort of slightly icky subject where we don't sort of talk about it, do we? So I mean, hopefully things like research, things like more visibility, that will only help, I hope. 

But there was something that you said about there being immune cells in the lining of the uterus where I went, Whoa! Because we hear about the immune system and the gut working quite closely together, don't we? But the fact that it also, I mean, are there immune cells in every part of our body?

Viki Male  
Yes, pretty much actually! There are a few parts of our body, where we have a word "immune privilege", and they kind of really do try to keep the immune cells out. So our eyes are a good example of that. One of the very first organs we were able to transplant successfully was the cornea, and that's because you don't really have an immune system in your cornea, which makes it really easy to transplant. Your brain when it's working properly, usually doesn't have that much in the way of immune cells. 

But all of the sort of places where your body needs the environment. So your gut you've mentioned, your lungs, obviously, is another example. Your skin, your uterus, where the environment is very specific thing in the uterus because the environment might be you know, an implanting embryo. All of these actually have really rich specialist immune systems that are very important for how they function. And of course we also have an immune cells in our blood and in other tissues like the liver.

Jackie Baxter  
Yeah, I mean, that really is fascinating, isn't it? I think - it's a bit I noticed this in myself where, you know, I'll listen to somebody talking some, you know, really quite specific medical jargon. And I'll be like, You know what, I actually kind of understand that now. And I think, you know, I think it's this thing with people with long COVID. And it's probably true of many chronic illnesses before Long COVID came along, where we kind of have been forced to be our own kind of doctors and to do our own kind of research. And to the point where actually, we're quite knowledgeable now, and it's sort of comes upon you by surprise, almost, I think,

Viki Male  
I think it's something I've noticed, actually, you know, working with, I don't like to say patients really, but you know, people who have lived experiences of whatever it is I happen to be working on at the time, whether that's pregnancy or the menstrual cycle, or long COVID. And it's actually it's really easy for scientists to be like, all up there in their terminology, and thinking that other people can't understand. But actually people who are motivated to understand, because it has an impact on her own life and their own decisions, absolutely can. 

Like, absolutely, we should try and, you know, meet them partway and make it easy for them to understand. But, you know, even when we don't, even when, you know, people just read papers that are written for other scientists with no concession at all, to non scientists reading them, when they are motivated to understand because it's important for their own lives. They do. And I think it's so important for scientists to understand that about the people whose work we're hoping that will improve their lives.

Jackie Baxter  
Yeah, exactly. And it's this idea of patient participation kind of thing, that I had never come across before being kind of in the long COVID world. And suddenly, it was like, What do you mean, patients are involved in research? Isn't research something that, you know, like, really clever people do in labs and white coats and things? 

And sort of realizing that yes, of course, that side of it is extremely important. And research couldn't happen without those extremely clever scientists. But actually, that the patients have a huge role to play as well in this, because if it wasn't for them, then you wouldn't be doing the research. And they're the ones that actually are going to benefit from it in the end. So it's this kind of collaboration kind of experience that was like a bit of a mind blowing moment for me when I realized that that was a thing.

Viki Male  
Yeah, and actually, this is something as well, that I think the scientists are learning as well, because it's definitely become more of a thing recently, and rightly so. Because, you know, it's very easy to design a study where actually, you know, what you're measuring is not what people care about - the people who are really impacted care about, you know. You can design a study where you're like, Oh, we'll increase your oxygen saturation by half a percent. And people are like - I don't care about the number, I care about how I feel. So you know, I think it's really important. And we're, and we're doing it more and more, and I think we need to keep doing it more and more. 

But this is really great, because it actually kind of brings me on to talking a little bit about, you know, what some of the people living with long COVID have said, that has kind of inspired us to start doing this research. So there are really two aspects to long COVID in the menstrual cycle. One of them, which I'm not working on myself, but we can definitely talk about, is how having long COVID affects your menstrual cycle, because a lot of people notice something going on there. And I think that's really important work for the future. But it's not unfortunately, what I'm doing today. 

But the really interesting thing that we did in kind of putting together our study, is we asked I think it was about 450 or 500 people who have periods and who are living with long COVID, about whether they noticed a pattern to their long COVID symptoms that changed over their menstrual cycle. And 30% of people right off the bat was like, No, I don't notice any pattern, that doesn't describe my experience. 

But what was really interesting was that those people who did notice a pattern, they really quite well agreed with each other about what the pattern was. So more than three quarters of people who said they noticed a pattern, said that their symptoms, they thought were worse in the run up to and during their period. So this straightaway tells us, well, if we take this at face value, this straightaway tells us that you know, hormonal changes happening over menstrual cycle might have an impact on Long COVID. And as soon as we know that, we can start doing things. 

So a lot of people do things like tracking their symptoms and planning things for times when they think they will and won't feel you know, more able to do them. If those people have that experience themselves, that they know that just before their period is a really bad time for them, they can work around that. 

But if we can kind of really nail this down, which we absolutely haven't done yet. But if we can really nail it down, and it turns out to be a real thing, we can start to say okay, if there's a hormonal effect of the menstrual cycle on Long COVID symptoms, maybe for some people, you know, taking hormonal contraception, or maybe people are a little bit older, taking hormone replacement therapy, that might actually really help them to manage their symptoms. And you know, it's not necessarily getting at the course, which we don't really know yet. But helping people to manage their symptoms is I would I think, be a really big step forward. 

So, so what we're aiming to do, like number one thing, is obviously here we have 450 odd people. So it's not a massive sample. And also, we were asking them, you know, to think back over kind of, you know, their previous experiences, and this is the answer they came up with for us. But I think it's really important that we confirm that in a much larger sample, and ideally, in a sample where people are kind of logging their symptoms in real time. And even more ideally, in a sample where people don't know that they're logging their symptoms as part of a menstrual cycle study, because of course, as soon as you know, what the study is looking for, your expectation of what the study is looking for can impact, you know, with the best will in the world, even if you're trying not to be biased, can impact how you feel about what's happening. 

So one of the things that we're just getting to, we've just got permission to start doing, so we're going to be working with the app Visible. And we've got permission to use data from them, if the people who are using Visible tick a box to say they agree that we can, to basically ask this question on a really big scale, you know, with all the app users of Visible of those who have periods and who put their period data into the app, which lots of people do. Do we see this pattern of menstrual cycle and just before the menstrual cycle being a worse time for long COVID symptoms? 

And digging down further, I think another really important question is going to be, you know, some people have different experiences of Long COVID. You know, some people have more of a fatigue experience, some people have more of a kind of like gut problems experience - is it actually different what kind of long COVID symptoms you have as to how it changes over the cycle? You know, maybe this is something that's really, really bothering people who have fatigue, but it's less problematic if you have gut symptoms. 

And then another really important thing we're hoping to find out in this study that we're doing in collaboration with Visible, is people who are taking hormonal contraception, do those people have - we might think, we might predict, that they would have less bad symptoms, but we could totally be wrong. So are they less bad, the same? Or maybe even worse? So these are the things we're really hoping to find out over the next kind of couple of months, digging into this enormous set of data that we're hoping to get, if people who use the Visible app, agree that we can analyze their data to find this out.

Jackie Baxter  
Yeah, I mean, that's amazing, isn't it that you have, you know, again, assuming that people tick the right box to say that they are happy for you to use their data, you know, just having access to that amount of people without having to - I mean, I've heard a lot of people, you know, doing research saying that actually they struggle with recruitment. 

You know, it's one of those things where, you know, we want research and we want to be involved in things and isn't, you know, why haven't we got more research? But actually, you know, when, when there is then research, it can be quite hard to get people. I mean, I think some studies have quite strict criteria. But, you know, I think it's a lot of effort being involved in research as well. And when you're struggling with energy, you know, you want the research to be there, and you want it to be done, and you want people to be involved. But sometimes you don't want it to have to be you, which must be really difficult for you as a researcher.

Viki Male  
No, absolutely. And I'm involved in another study, which I'll talk about later, where we would be asking more of the participants, and I'm so aware that, you know, for our long COVID cohort, just, you know, getting on with their daily activities can be difficult for them. And then on top of that, we're like, can you come and give blood? And so we so appreciate it when people do. 

I had a little bit of a struggle with this, actually, when I was getting the ethics approved for all of this, because I felt-  and Harry, you know, who runs Visible felt as well, that, you know, it was so important that we make all of our information screens, like quite short, you know, to the point, because many of the people who would like to recruit have difficulty concentrating. That's one of the things right. So I was trying to keep all of my information as short as possible. And when we go to the Ethics Committee, the Ethics Committee is like, no, can you actually make it three times longer? 

And although I understand why they wanted to do that, because it's really important, you know, that people are completely informed about the study, I had to have a kind of discussion with them where I said, Well, you know, like, part of the point is that these people, some of these people, some of the people we're hoping to recruit can only really manage one screen of text on the mobile phone. So you can make me make it three screens of text. But what will happen then, is that they might not read the second two screens. So isn't it better that we have, you know, it's short, we get across everything that we really need to do in order to kind of conserve people's ability to concentrate so that they can, you know, so we get across the most important information straight away. 

And in the end we came to a compromise. But it definitely is one of the issues in working with people who are living with long COVID. The fact that for a lot of them, you know, concentration can be a difficult thing.

Jackie Baxter  
And I guess this comes back to what we were saying before about how it is so important to be working with and listening to those people with long COVID. And it sounds like you've really done that through Harry himself, obviously, but also, you know, presumably through lots of other people that you've been in contact with. And you know, you really understand that actually, you know, a lot of people couldn't do that much. So if you make it too difficult for them, then they just won't, and then you'll lose a whole load of your sample size, won't you?

Viki Male  
You might lose your sample size, or people might, and like heaven knows, I don't live with Long COVID. But I do this myself, you know, Here are the terms and conditions. Do you accept them? And they're like, 17 pages long, you just scroll to the bottom and go yes. And we don't want people doing that in medical research, we really do want people to understand what they're doing. So I think that's why it was really important to make sure that we could get the information across in a concise way that everyone would be able to access.

Jackie Baxter  
Yes, absolutely. Yeah. And I think you know, it is, it's so important, isn't it? Because it's people's health, their data, you know, it's important that they understand what they're signing up to, I suppose, isn't it?

Viki Male  
Yeah, but we are hoping I mean, the Visible thing, obviously, it's data that people have already entered. And it's data that they're entering anyway for their own, you know, to keep track themselves. So it's very, very in terms of what we're asking people there, a light touch study, extremely light touch. But yes, of course, there are data protection issues. But you know, those are taken very seriously. And everything's anonymized before it leaves Visible. So we've got that all sorted out. It's just important that people understand it.

Jackie Baxter  
Yeah, yeah, definitely. But yeah, going back to what we were saying before, I mean, this sort of idea of symptom exacerbation in the sort of end of the luteal phase, I think is where it tends to be. That's certainly been my experience. And those of what I've heard from a lot of other people,

Viki Male  
I'm going to stop you a tiny bit. And I'll tell you why. Because I know that not everyone straight off the bat will go follicular phase, luteal phase and know what we're talking about. 

Jackie Baxter  
Yes. So let's go into that a bit more specifically. Yeah. 

Viki Male  
So let's, let's just before we start talking about it, let's just talk a little bit about the menstrual cycle. So for a lot of people menstrual cycle lasts for 28 days, but it's completely normal for it to be as short as 25 or as long as 35. And it's actually completely normal for it to vary quite a lot. But let's just talk about, you know, the  average "28 day cycle", so the first day of your menstrual cycle be the first day of your period. And then we would have what we call the menstrual phase, which is the time during which you're having your period, so you've got some vaginal bleeding. 

And then we have a period which is called the follicular phase. And that's because there are follicles in the ovaries that at that point are developing. And at this point, the follicles in the ovaries are developing, and also the lining of your uterus is starting to build back up after you lost it during your period. And I'm going to try and just call that the first half of the menstrual cycle while we're talking today to make things easy for people. And then we have ovulation, which kind of just divides the menstrual cycle in half. 

And we have the second half of the menstrual cycle, which as you said, is often called the luteal phase. Because at that point, the follicle that released the egg turns into something called the corpus luteum, secretes progesterone. And that causes the lining of your uterus to become really thick, and to start producing secretions, which will help to support the embryo if one happens to make its way down there. So that's your the second half of your menstrual cycle, and it's really progesterone dominated. 

And then about two days before your period happens, we'll start to see the corpus luteum involeting, or a little bit before your period happens, a corpus luteum will involute. And so that's just a fancy way of saying basically, it dies, it gives up. And because it was making the progesterone, that means you no longer have what's been maintaining that lovely thick lining of your uterus. And when that signal to maintain the lining of the uterus goes away, then it will start to break down. And you will notice that most obviously, as the beginning of your next period, and the cycle starts again. 

But it's really important to say, and I think this will get us back on to what you were talking about in terms of your own experiences, that even though the obvious sign that the cycle starting again is the first day of your period, a lot of people will feel that two days when the progesterone is declining. And so a lot of people will feel you know, maybe not quite themselves, might have problems with their temperature not feeling quite right. Some people feel a little hot and gross during that time, and so, even though the cycle hasn't started again, a lot of people will feel that. 

And I think this plays into I mean, everyone, actually, a lot of people have this experience, but I think particularly, I'm hearing people with long COVID. So, having just done that tiny little bit of terminology to make sure everyone was on board with it. I'm really sorry to have interrupted you. Do you want to go back to what you were talking about?

Jackie Baxter  
Yeah, no, I think you're absolutely right to do that. Because, you know, not everybody will 100% understand that. And it's always good to have a reminder, as well. Because I think something that I've noticed is actually, you know, if you'd asked me three and a half years ago, before I got ill, you know,  what happened? I would have been like, no, no stuff happens. And then that happens, you know, I would have had very little idea, and it's only through actually kind of, you know, trying to work things out, that actually I've understood a lot more understanding a lot more has helped me to really, you know, be able to, you know, kind of work with it - I was gonna say try to fix it, you can't really do that can you, but to kind of, you know, work with it? 

Because I think I think that's the thing, isn't it, this kind of end phase. So the end of the luteal phase, just before the period starts, that tends to be where people will really notice. I mean, like you say, people would have noticed it anyway, probably before long COVID. I mean, I certainly did, but I would have ignored it and pretended that everything was fine. 

But then, you know, when you end up with long COVID, suddenly, that is where you tend to get symptom exacerbation. And I remember a big moment for me was when someone said, Oh, well, progesterone, that's a respiratory stimulant. And I was like, Whoa, so my breathing is going to increase then anyway, it's not just you know, so it's all kind of when it comes together, and you start to kind of understand a little bit more. It was like, okay. But this does seem to be then anecdotally, a big thing in this kind of phase, doesn't it?

Viki Male  
Yeah. And what's really interesting to me, a and kind of another reason that I got into this was that as an immunologist, even though this isn't kind of exactly my area, we've always known that certain autoimmune conditions get better in pregnancy, and some autoimmune conditions get worse. And there's an extent to which the second half of the menstrual cycle is a lot like pregnancy, in terms of, you know, the hormones and what's going on with your immune system. Because the second half the menstrual cycle, is your body preparing to be pregnant, just you know, if that happens to have happened, 

Jackie Baxter  
Just in case! 

Viki Male  
Just in case exactly! We are very unusual, actually, among animals in having this system where we kind of like do like little mini practice pregnancy, just in case we are pregnant, and then we give up on it if it's not worked, like most other animals don't do that. And it's really interesting, and one of the things that makes working on human reproduction quite quite tricky. 

But what was really interesting is, you know, for example, MS. We've known for ages and ages, that people will get a lot better when they're pregnant, with MS. And similarly, though, people with MS will often feel a lot better in the second half of their menstrual cycle, when we're having this like little mini practice pregnancy. And then as soon as the progesterone goes away, you know, in the couple of days leading up to your period, and then your period, people with MS will often really feel a lot worse. 

And so when I heard people with long COVID, talking about their experience being like this, I was like, Oh, that really sounds a lot like MS. And also IBD, which also has a kind of immune component to it. There's some evidence that that's a lot worse during your period. And the particular study that I'm thinking of is really good, because they took a cohort of people as well, who didn't have IBD. And they kind of gave them a challenge, which doesn't sound too pleasant. 

But fundamentally, they put a balloon up their rectum and inflated it a bit. And so how much it bothered them. They did that with the IBD cohort and with the non IBD cohort, and kind of in agreement with what the IBD patients were saying, they were a lot more bothered by it during that period. But what was really interesting was that the non IBD patients, they did not have that experience. So that tells you that it's not just sort of like general Oh, we will feel a bit gross during our period, specific to IBD, in that study, because they had a control group, you weren't experiencing it. 

And this is kind of what another thing that led me on to wanting to work on this and lead me into collaborating with someone who's properly a long COVID researcher, which I don't consider myself to be I'm learning. But so I've also started to study, or rather Danny Altmann at Imperial, like me, has a study called the Wilco study. And it's a really big study that's including lots and lots of people with long COVID, and is basically asking the question, are there differences to the immune system when you've got long COVID? And is that maybe what it is that's, you know, causing your problems? And if you can work that out again, you've potentially got the opportunity to treat it. 

And so when I got this data from Gez, I was like, oh, that's, that's really interesting. It sounds a lot like MS. And I knew that Danny was doing this study where he was working on the idea that long COVID might be autoimmune. And I got in touch with him. And we kind of started chatting. And there was the opportunity to apply for some money. And I said, Well, you know, what, if we can get this money, can we perhaps just add a little bit into your study, where we really drill down and we focus on a very specific cohort of people who have long COVID and who have periods, or who don't have long COVID, and have periods. And we take blood samples through them multiple points throughout their menstrual cycle. 

And this is the study I was talking about where I really feel like we're asking a lot of the participants. But I hope that some people will be able to do it, because I think it will be very interesting for finding out why this is happening. And so that one, again, has literally just started recruiting. It's - at the moment where ideally trying to get people who live near Hammersmith Hospital, which is where where Danny is, because it's just much easier for them if they live near the Hammersmith hospital. 

So if anyone's interested potentially in taking part in that, I've given you our email address for the show notes. AltmannlongCOVIDstudy@imperial.ac.uk is our study address. So anyone who is living with Long COVID, who has periods, who is between 18 and 45, and who is close enough to the Hammersmith Hospital in West London, that they reckon they could come in five times in a month. So we are asking a lot, but I hope someone will be able to, please do email us because we'd love to hear from you.

Jackie Baxter  
Yeah, absolutely, I can see why you would want them to be living quite locally for that. Yeah, that's amazing. So is this two strands of the same study then - the sort of the Visible data and the blood samples, or are they sort of more separate?

Viki Male  
Well, in my head, they're two strands of the same study, because I think that, you know, the Visible data will tell us something really important about how symptoms change in a really big, unbiased way. Meanwhile, the data from the Wilco study will tell us about how the immune system changes in probably a really small way. We're hoping to get 30 people. But you know, we realize it's a big ask, so we might not get 30 people. 

And I think that by combining these together, we'll find out quite a lot. From a kind of like ethical review point of view, they're separate studies. But I think that, you know, thinking about it scientifically, they're really part of the same push to understand how long COVID symptoms change over the menstrual cycle, which we'll mostly find out from Visible, and then why they change over menstrual cycle, which we're hoping we'll find out from the collaboration with the Wilco study.

Jackie Baxter  
Isn't that cool, though, that, you know, that you've got - I don't know, just yeah, like you said earlier, just access to so much data for for some of it. And I suppose this comes on to sort of the next thing I was going to ask - was when are you expecting to be able to find any sort of results? 

Because you know, that's the thing with research, isn't it? It's like, we're going to do this really exciting idea. And isn't this brilliant? But then oh, but actually, it's going to take time. And I think this is something that as a person with Long COVID, we find intensely frustrating, but then when you realize quite how much stuff you and your team has to do, it's kind of like, oh, okay, that's, you know, it's still frustrating, but I kind of get it like, that's, that's a lot.

Viki Male  
Yeah. And of course, it's really important to us that before we say something, like let's say, we came along, and we were like, Oh, doing this will help. We want to be sure that we're right. You know, we don't want to rush it and tell you to do something, and say that something that won't help might help. And everyone spends, you know, six months eating cucumbers, because, you know, the study seems to suggest that cucumbers somehow help. 

So it's important, yes, that we that we take our time, that we get it right, particularly with respect to the menstrual cycle study, just in terms of well, the Visible aspects of it in terms of like the amount of data that there is. That's a challenge. And then in terms of the Wilco study, because we have to get people to come back to give multiple samples, like even just the experience of one person giving the samples will happen over a month. And that's before we even start doing any science. So menstrual cycle stuff is quite often slow because you can't just take one sample. So there is that aspect. 

I mean, the other aspect that's been a little bit frustrating for me is, during the pandemic, things to do with COVID ethically were quite often and fast tracked. And that's not to say that, you know, the requirements were any less than they usually would be, but they went to the top of the ethic committee's pile. And that's no longer the case. So in terms of getting these studies approved, it's actually taken us a year, basically. And that was kind of disappointing for us because we know that the community would like answers quicker. And that year was a whole year when we couldn't do anything because we weren't allowed to, because we hadn't got the permission to. 

So that's kind of why we're starting now rather than starting 18 months ago, which we would have loved to do. But in terms of kind of like our timeline, we are literally just starting to recruit for the menstrual cycle substudy of Wilco. I was looking at our participants database this morning. And the recruitment emails went out, some of the recruitment emails went out yesterday, and the first person to fill in the form to say, Yes, I'll do it. The form was on my desk, well, virtually on my desk, this morning. So we've got our first recruit there. That's where we are with Wilco. 

And then in terms of the Visible - the study is going to be released, I think, in a couple of weeks time. And we'll see how that one goes. But yeah, we're still so close to the beginning. And part of me thinks that actually, you know, your experience, for example, of having had long COVID for a really long time, and now, luckily, beginning to feel a bit better, means that hopefully, there will be lots of people who, before we can tell you the answers to this, will be feeling better anyway, that's what I hope. But it will still be important for the people who aren't feeling better. 

And also, I think we now have to put an eye to the future. And to, you know, sadly this will not be the last pandemic I see in my lifetime. You know, I'm sure we'll have another one, just because of how these things work. And it would be really good in the future to have a really strong basis of knowing all about what happened in the COVID pandemic. So that maybe next time right out of the bat, we can say, well, in the COVID pandemic, we found out that this helps with long COVID. And straightaway, we'll have you know, ideas and things to test if we ever end up in a situation like this in the future.

Jackie Baxter  
Yeah, because I think you know, what, I again, have not really realized because it's just not something I'd ever experienced. But you know, having suddenly ended up with long COVID and realizing that actually, chronic illness is an extremely understudied area of medicine. And then combining that with menstruation, which is also quite an understudied area of medicine, because well, partly because of the reasons that you've just outlined,, but it's really difficult, because it changes all the time. So I suppose when you then combine the two, you're thinking, well, actually, these are two understudied areas that are kind of coming together, which, you know, is making this research more important, partly for now, and, you know, in the future.

Viki Male  
Yeah, exactly. And I guess even outside of a pandemic situation, you know, we can have a discussion about the extent to which long COVID is kind of just a COVID-associated version of MECFS. But of course, MECFS continues to be a thing. So it might be useful for people who have that to find out a little bit more about how the menstrual cycle affects it.

Jackie Baxter  
Yes, absolutely. And I think when I spoke to Harry Leeming, maybe two months ago, I think, and, you know, we had this thing where we were saying, oh, you know, no one's looked into menstruation with all of this, and isn't this exciting that you are. And then before the episode aired, about maybe two days later, this paper from the Patient Led Research Collaborative, Lisa McCorkel and team sort of came out, and me and Harry sort of went, Oh, that's a bit embarrassing. But you know, at the time, when we were talking, it hadn't come out. 

Viki Male  
But also, like, when we saw that come out, like part of me was like, Oh, brilliant. Someone has put together like, all of the background to what's important for my study, into this review, like, brilliant, so much work has been done, to get us off the ground. And then I read it, and the people who've put it together have done a brilliant job, but a brilliant job in an area where there's not a lot of research. So, you know, there are various things there that kind of fit in with what we're seeing with long COVID. 

So one particular thing is that people with MECFS do tend to report worse symptoms in the premenstrual phase and menstrual phase. So that really lines up with what sort of COVID cohort are saying to us. But then actually, you know, looking looking into it, like, what's the mechanisms? Are we definitely sure? Going on to that flipside question of how does long COVID or MECFS affect the menstrual cycle, rather than the other way around? What is known about that. They've done a brilliant job of collating what's known, but the answer is actually, still not that much. So I think there's a real, you know, a real knowledge gap here, that I'm hoping that we can fill.

Jackie Baxter  
Yeah, yeah, definitely. And it is exciting, I think that, that this is now an area that is beginning to be looked at a bit more. I mean, it's also like, why on earth haven't we done this before? But at the same time, it's, it's great that we are now. 

Viki Male  
Well, well, one aspect that that paper brought up, which we haven't really talked about yet, and it's not my research, but I think it might be interesting for, you know, listeners of your podcast, while we're on the topic, is this flip side question. So you know, we're asking, does your phase of the menstrual cycle affect your symptoms? Can we use that to maybe improve symptoms? 

But a big flip side question is actually - does having long COVID or MECFS - does that affect your menstrual cycle? And anecdotally, a lot of people will say like, yeah, actually, my menstrual cycle has been quite messed up since I started to have long COVID CFS. And that's something that the paper from the Patient Collective that was recently published in frontiers in rehabilitative science actually has a reasonable amount of studies on. And it seems to be a really common thing that people notice changes to their menstrual cycles in association with MECFS, and also long COVID. And I think that would be quite an interesting thing to find out. Not something that I'm working on myself. 

And another aspect of that, that I'm hearing a lot from my colleagues in, for example, general practice or gynecology, is  - we haven't even mentioned but, of course, I'm sure everyone in your podcast knows very well that, you know, this is a problem that predominantly affects women. But a lot of people in general practice are noticing that there's a big overlap between sort of some kinds of long COVID symptoms and symptoms of the perimenopause. And I think in terms of quality of life, that's definitely something it'd be really interesting to look at. 

Because just anecdotally, a lot of people are finding that you know, if you have someone who's potentially got both long COVID and perimenopause, if you just say, Okay, we're going to set the Long COVID aside for a while, and we're going to worry about what we think might be perimenopause. And we're going to see about treating that with HRT. A lot of people find that that can be really helpful for them. And I think it will be great to understand properly if that's really happening, or if this is just a series of anecdotal reports. 

And if it is really happening, again, why? What is it about long COVID that seems to make perimenopause symptoms worse? Can long COVID trigger menopause? Do they just happen to have sort of similar symptoms? So, you know, it kind of cross helps? Or do they actually, does it genuinely exacerbate symptoms? I think that would be really, really important to know. And that's something I really hope someone will look at. Because I think that's, again, something that could really, really help with quality of life for people who are living with long Covid.

Jackie Baxter  
Yeah, yeah, definitely. And I suppose it's also quite interesting. I think it's quite difficult to quantify because what is long COVID? What does long COVID actually include? Because it's a very big umbrella term. But I think most kind of anecdotal, and possibly even actually evidence, says that long COVID seems to affect more women than men. And is this to do with hormones? I mean, that would be an obvious answer, wouldn't it? But I don't know if there's anything to back that up.

Viki Male  
That's a really interesting one. And so, I mean, I don't think I've ever seen anything that doesn't say that it's a sort of female predominant disease. I don't think I've ever seen anything to the contrary of that. So I think, you know, I think we can pretty well agree on that. 

I mean, one very interesting question, that something perhaps like the Kings Symptom study could address, when you've got a lot of people is, you know, if we start looking at people, and we divvy them up by what kind of hormones they're taking, particularly, the interesting thing to do would be to look at people who are taking gender affirming hormones, because they're transitioning to being the other gender to what they started off as, it'd be really, really interesting to know if that makes any difference to long COVID symptoms, and that's something like a massive study, like the kings symptom study might be able to address. I don't know if they've got any plans to - it would be super interesting, though.

Jackie Baxter  
Yeah, it would be wouldn't it? Well,  we'll give them this one for free.

Viki Male  
No need to thank us, Tim. 

Jackie Baxter  
Yeah, amazing. 

Viki Male  
There's only really, you know, one thought that I'd like to leave you with, or maybe two thoughts. Firstly, this idea that now, and particularly with long COVID, the experience of people who are living with it is so important for directing research. So you know, do get involved, even if you don't feel like you can get involved by, you know, giving blood or answering certain survey questions or whatever. You know, your experience does actually make a difference to what we're studying. We would not have started studying this if it had not been for the experience of the long COVID community. 

And then more broadly speaking, you know, mainly to all of your listeners out there who have periods, or who maybe have withdrawal bleeds. So those are the bleeds you have if you stop taking your pill for a week. This is something that I think we need to talk about more. And again, coming back to this idea of of lived experience. If people hadn't been talking to us about their periods, we wouldn't have felt thought to answer these questions. 

So really, just your experience matters, whether it's your experience of your long COVID, or your experience of your menstrual cycle, or your experience of your hormonal contraception, or your experience of your HRT. All of this can inform research, and you telling us about it and talking to each other about it is really important. And I know you do that a lot already. But I just want to say keep going.

Jackie Baxter  
Yeah, well, thank you so much for joining me today and telling me all about your really really exciting research. But and also you know, for everything that you are doing as well. So I will make sure that those links go into the show notes. So if anybody is interested in signing up for that, or just reading a bit more about it, then please do. And yeah, all the best with the study and maybe you'd come back and chat when you've got some results?

Viki Male  
Oh my goodness. When I have results I will absolutely come back and tell you all about them. I would be delighted to

Jackie Baxter  
Amazing. Thank you so much.

Transcribed by https://otter.ai