You are not alone: navigating post-holiday fatigue, grief and acceptance in chronic illness. Gez Medinger & Emily Kate Stephens

Emily Kate Stephens (0:02): How are you today? Let's welcome our audience into 2026 with just some reality of, how are you?

Gez Medinger (0:08): I'm pretty bad in all honesty

Emily Kate Stephens (0:11): You’re not alone.

Gez Medinger (0:13): Everybody has their own balance of number of good days to bad days.

Emily Kate Stephens (0:17): This immediate post holiday period, for those living with these complications, it can actually be fairly devastating for your health.

Gez Medinger (0:25): It’s rough…

Emily Kate Stephens (0:26): Let us just talk, Gez, and help people feel acknowledged and feel validated for what they might be going through at this point of the year. None of you are alone. Welcome back to Make Visible, and welcome to 2026 I'm really excited this week to share with you some progress that we're making here at Make Visible, and this is partly to do with our audience response to an episode that I put out where I had a conversation with Gez Medinger, and that really, really seemed to strike a chord with you at home. So we've brought Gez back today, as promised, for more conversation. But further than that, we are going to bring Gez on board for more of what we're doing going forward, and Gez and I conversing is going to hopefully become part of our regular thing. So Gez, welcome back to Make Visible. How are you today? Let's welcome our audience into 2026 with just some reality of, how are you?

Gez Medinger (1:59): I'm pretty bad in all honesty today, but this is how we roll, right? Everybody has their own balance of number of good days to bad days where you draw the slider in terms of what constitutes good or bad. Obviously, that's completely different to the old days, but within the spectrum of our existence now we have good and we have bad. Unfortunately, today is a bit ropey due to insomnia last night and a consequential extra degree of frazzle today. So if I start making no sense, you'll have to let me know. But it's absolute privilege and a pleasure to be here, and I look forward to being here much more frequently.

Emily Kate Stephens (2:33): I am so excited to have this opportunity to have this back and forth with you. I so much enjoyed our first conversation, and our audience did too. We had an overwhelming response on Make Visible. You put it out on your channel as well, and you had an amazing response to it. I think what seemed to really resonate with people, obviously, I made Make Visible initially as a podcast, and the remit was to try and bring the science of these chronic energy limiting conditions to an audience and try and break that down a little bit. But I think what people really, really loved about our conversation was that lived experience and the reality of it. So that is definitely something that we are going to bring to you. And Gez and I are painfully aware that for a lot of people listening here this immediate post-holiday period. Yes, New Year's resolutions and looking forward to the year is not necessarily all fun and games for all of our audience and for those living with these invisible illnesses. And the first thing that I want to say to you is that none of you are alone, none of you have gone through this. What's supposed to be a spectacular and fun time of the year, and for those living with these complications, it can actually be utterly exhausting. Can actually sometimes be fairly devastating for your health, so you're not alone, and let us just talk Gez about our experiences and help people feel acknowledged and feel validated for what they might be going through at this point of the year.

Gez Medinger (4:29): Well, I think Christmas in the normal world is a wonderful time of year. Christmas with chronic illness is an extremely challenging time of the year because there are expectations of what one should do around friends and family at Christmas, you may not be able to meet all of those expectations. You may also be coming into contact with people who don't understand and they don't understand what it takes to appear as normal as you are able to, which may or may not be anywhere near to normal. But we all make this massive effort when we're in those sorts of social environments. And I think a lot of people don't understand the cost that it takes to get to that place and hold that, you know, hold that degree of air in your system. It's almost like you've pumped yourself up with some bellows or something. And like you like a balloon that wants to go right, but you still like trying to keep yourself, holding it together, trying to pretend to be a normal person. And in the middle of all of this, you've got travel, potentially, you've got lots of people, you've got noisy environments, you've got lots of different foods being thrown around the place which you may not be able to eat. And there's "Gez, why can't you eat the stuffing? Why can't you eat the Christmas pudding?" Because they're a disaster in terms of histamine, so much challenging stuff in all of this that I wouldn't be surprised if so many people listening to this had an enormous crash afterwards, no matter where they thought they were before, that's certainly where I'm coming from now, which is a couple of weeks of trying to recover from a crash brought on by trying to do too much, combined with travel and seeing family and friends and it’s really hard.

Emily Kate Stephens (6:05): Yes, and it's really the microcosm or the macrocosm of all potential triggers, because you've got that overdoing it physically and the requirement of doing everything and actually being in lots of different places. But there's also a huge amount of that emotional side, I think, for a lot of people, that goes into whether or not it's the challenge of, can I make it, or the fact that there will be people that you have to, we all have to, at this time of year, suffer people that we don't necessarily choose to be with, in terms of family and friends. And so there's this huge emotional toll that it takes, as well as the actual physical exertion.

Gez Medinger (6:52): Can I roll another extra little ball in there? Because so far I've just been looking at it from the perspective of someone who's made it to the family Christmas. There's also going to be a good number of us who didn't make it to the family Christmas, and that carries a whole other set of feelings around not being able to go and be part of something that you should be part of, and whether it's Christmas or whether it's some other form of engagement or party or events, all of us, since we've been suffering, have had to cry off those sorts of things. And it's crushing, if you're not a flaky person, to do so and to appear to the rest of the world as flaky, and then to just be lying there alone at home feeling awful, physically, emotionally, mentally, absolutely, I'm probably trying to say it with a smile on my face, but it's rough. It's rough. AF is what it is.

Emily Kate Stephens (7:41): Yeah, and there's so much guilt that comes with all of that. There's the guilt that they feel themselves, and the guilt that people are made to feel by other people, and we've spoken before about acceptance, but there's definitely something that's so miserable about just being left by yourself when you know that everyone else is out having fun. My experience just a little before Christmas was actually that I had two and a half weeks of sick kids, so they were constantly in the house. I'd been solo parenting for six weeks, so everything had been on me for six weeks, and then the final two and a half weeks before Christmas, the kids were sick, and so that brings in that whole Well, I'm just going to have to cancel everything. All of my plans changed. I had to cancel who we were seeing, certainly. But further than that, just cancel things that I had hoped to be doing, in terms of work or in terms of other things. And it has taken me, it's almost six years since I got Long Covid, and it has taken me this long to be able to mentally adjust to allowing those things to go, that ability to not always feel like you're completely missing out, to not be constantly upset about the plans that you have to change or the things that you have to give away. Has taken me so long to come to terms with that, even now, there was one day where I was actually kind of irritated with my children. I was like, I have had to cancel everything for you. And there was this switch inside me that was like, change this narrative, because that was what I was doing to myself for so many years was being aggravated with myself, and actually it was only once I have just lent into it. And so this Christmas season, I lent into that, and we have been on the sofa, and we have been taking the easy way out in terms of taking things out of the freezer and just trying to simplify life. And instead of putting the pressure onto myself, I was like, it doesn't matter if I haven't decorated the full house. It doesn't matter if we haven't made the annual gingerbread house. What matters is actually just being okay. Everyone being okay. And so that is such a huge mental shift that I have had that I would never have been able to do six years ago.

Gez Medinger (10:13): It's amazing, isn't it? It gives you as much as you wouldn't ever wish to have it. And if I could go back in time, I'd behave very differently to try and dodge the bullet heading in my direction. It does teach you things, and I think it makes you a better person. It gives you a huge amount more understanding. It forces you to completely confront all sorts of beliefs you have about yourself, all sorts of narratives you might have. And there is the opportunity in that to become a better person and to become a wiser person, I think. And so there are hidden things in all of this, which, whilst you would never wish for, if we choose to open our minds to seeing them, then actually it can help us find some peace with where we currently are, and that doesn't, of course, mean that we don't give up hope of recovery or getting better or doing more, but it's a constant struggle. And there's many parts of me that are in constant battle between berating where I am and then also trying to say yes, but, and then you consciously have to try and step back and go, You know what? I'm going to take the Yes, but, and actually, it's okay. It's okay for this to be like this right now. Don't compare yourself to others. Put yourself anywhere else. It's just okay. And actually, as soon as you get to that place of telling yourself this is okay right now, again, it's a really good thing for your nervous system. And that has to be that has to be helpful for your symptoms by itself.

Emily Kate Stephens (11:36): So the amazing thing in so many of the things that I've read, the processes that I have tried to work through myself, to help myself, is this idea of being present. We talked about it before, not looking too far back, not looking too far forwards, and really in these kind of situations, it can be so awful to sit with the present moment, but if that's what you have, let's try and find whatever we can within that present moment without pushing our expectations too far. I think it certainly has taught me a greater kindness with other people. And that's not to say that I was ever unkind to my children when they were sick before, but the permission that I've given them to actually rest and to just spend days on end lying on the sofa watching television, I would never have allowed myself that six years ago, and I certainly wouldn't have allowed that in them that six years ago. So they would never have been allowed to watch so much TV. But it's just that, I don't know, relaxing of your expectations of yourself and everybody else. But with that, there still comes this thing that it's probably easier still to be kind to other people than it is to yourself

Gez Medinger (12:53): Agreement on that we are our own critics.

Emily Kate Stephens (12:56): Yeah, critics. So in terms of the podcast going forwards, because we have listened to everybody's feedback, everyone that has written to us on the podcast apps and please do continue to feed in there and get in touch any way that you know how, but I will make sure everything is in the show notes. You have asked, as an audience, for things to be sometimes broken down more, and you've also said how much you've enjoyed one is our personal conversations, Gez and my personal conversation, and the really, really practical episodes. So our plan is to try and bring you those things in different strands. We will mark those episodes for you. We're going to bring you some really practical advice. We're going to share stories, personal stories, and hopefully talk to other people with lived experience. And we are still going to do the science and still bring out that latest research, but what we hope to do is Gez and I will go through it, break it down for you, talk about the things that are challenging and talk about the things that are possibly less easy to understand, because I have had some people say I'm not scientific, so some of it I find a little bit dense, and that is what we are going to try and just break down for you. So in terms of strategies, practical strategies, tell me, Gez, what have you been trying recently? We spoke previously you were about to embark on EMDR, I actually had some people say to me, don't talk about EMDR, don't talk about something like that doesn't have necessarily full scientific basis. And one of the things that you and I are keen to bring in here is we want to talk about these things that are potentially viewed as challenging to some, but have helped others. And I believe that EMDR does have scientific bases. Tell me about your experience with it and your knowledge of it, please.

Gez Medinger (15:10): Okay, so let's start off with what it is. EMDR stands for eye movement desensitization, reprocessing, and what it essentially involves is going through prior traumas in your life, whether it's big T trauma or little T trauma, and moving your eyes left and right, or as I do, have buzzers which go off alternately in your left and right hands. I do that because moving my eyes left and right would destroy my brain in about 10 seconds with Long Covid. And the idea of it is that it unlocks and lets the body physiologically release the tension that is stored by unresolved trauma. So we all have, as mammals, a biological innate ability to physically release the adrenaline that comes from traumatic events when that happens. If you're a gazelle on the African plains being chased by a lion, once that chase is over, it stops. It does this weird shaking ritual, and then it goes back to grazing, right? But depending on where we are in our lives, whatever that natural human way is of doing it, especially if we're kids, and we're not in a safe environment, an emotionally safe environment, we don't necessarily have the opportunity to vent that, and it might take the form of tantrums. Right? As a kid is where all of that emotion comes pouring out, and it's actually very healthy at certain stages of development for kids to have tantrums. Now, if you did, never had tantrums, and you basically never did the terrible twos, and you never did the terrible teenage years, and you just bottled it all up inside, which is kind of what I did. There's probably going to be a fair degree of physiologically stored, I'm going to kind of call it nervous system tension in the body, as a consequence of that unresolved little T trauma. There is an idea like, just, let me run with this. It seems like there are people who are disproportionately represented in the Long Covid community, and these are people who previously ran their nervous systems into the red for years or decades, and when the once in a century virus comes along, knock them over, what happens to a nervous system that's been in the red for years or decades, well, it collapses and hey presto, off it sets this kaleidoscope of symptoms and the condition we call Long Covid and ME/CFS, so that nervous system being razzed into the red. Yes, it's a consequence of behavior and the rest of it, but it can also be innately pushed that direction by virtue of that nervous system tension that we're holding in our body. And for more on this, I would point you towards a book called The Body Keeps the Score by Bessel van der Kolk, which is quite famous. And this in the scientific community is pretty well accepted, actually, that there is a physiological consequence of the events you experience and the different ways you process them at the time will have different physiological outcomes. This is pretty well acknowledged. What we also have when it comes to EMDR is a pretty good, widely accepted scientific consensus that it is helpful for people with big T trauma. And I say big T trauma because the studies they did were looking at people coming back from war zones and things like that, very clear, obvious events that they're using to unpack and deal with the direct symptoms of PTSD, EMDR has shown to be effective in those scenarios. Now, there is a gap here, which is, well, does it work for Long Covid? And is this sort of idea, this theory of basically the razz nervous system prior to Long Covid being part of the problem? And hey, maybe you can almost use EMDR to let some of the pressure out of that nervous system that still, basically, I could imagine, like on a steam train, like in the movies, you've got a steam train, and they throw the coal into the boiler, and then you see the pressure gauge going up and up, right? And basically the steam engine is kind of blown up, right, but it's still, there's still too much pressure in there. Can we try and let some of that pressure out in a way that we can't do otherwise. This is the gray area in the middle. Can we link these two things? Is there a connection there? Does it work? Now, what I would say about how you can talk about doing these sorts of things, and pretty much every treatment we've talked about with Long Covid operates in this space. You have something like midodrine, it's a drug designed to do X, Y or Z, and then we take it for Long Covid or Metformin. Well, it wasn't. It was designed for diabetes. It wasn't designed for Covid. Repurposing. Every single drug out there is a repurposed drug for Long Covid, and we know it's effective for x. Can we apply it to y? And this is actually no different, really. It's just coming at the problem, rather than from a pharmacological side, is coming at it from a psychological and potentially physiological side, which links those.

Emily Kate Stephens (19:39): You have said Bessel van der Kolk and I have referenced that book previously in the podcast, this link between the way that our body and our mind intrinsically linked, but also the things that are stored in them. I think that EMDR operates in a similar way to multiple of the other therapies that are being tried for Long Covid, aside from the drugs, in terms of nervous system regulation tools that we are being taught it is about those things that have been stored inside the body, whether they're from trauma or from that kind of living at that level of burnout, or from suppression of emotion, or from repeated physical traumas of some sort, be that the old infections,

Gez Medinger (20:33): Yeah, combined insults, yeah, it's this

Emily Kate Stephens (20:36): Everything being stuck inside with no release. And so while some people might be skeptical of techniques like EMDR, if it works for you, if it works for a person, I would love us to try and be able to be open to everyone's experiences. And there's this thing, we all got into this situation. Yes, with certain things like Long Covid, we all have this one trigger. But we all got into this situation as a combination of so many different multiple strands that go into making up whoever we are today and whenever we got that viral hit, or what the final straw was that there are going to be so many different ways that different people find effective to unravel that and to release that pressure, has it released pressure for you? Because you're what sort of eight, 10 sessions about that in, yeah, and what is the physical feeling? What is the emotional, mental feeling from it?

Gez Medinger (21:47): Who? What I would say is my mental health was in, not in a brilliant state beforehand, I was finding myself getting emotionally overwhelmed quite easily before I started doing the sessions, to the extent though I'd put on my meditation apps in the morning, and I'd spend 10 to 15 minutes crying, sobbing, and then I'd feel better afterwards, tired, as you always do, but better afterwards. If all of this stuff is there just bubbling out the whole time I need to address this. Previously, I've done talk therapy. EMDR works differently. Obviously there is some talking, but fundamentally, you're coming at this stuff from a different angle. During the sessions, it's difficult. You're going to places that you have locked up. If you know what I mean, the metaphor I used is that basically there's a bunch of stuff, which is like Chernobyl, and then I built this concrete containment sphere over it, like we did at Chernobyl. And now I've basically got to go and like, either hammer down the concrete containment sphere to let out the radiation that's in there, or find the door, or find some way of defusing all of that potent energy that I basically locked up for decades and put in a containment, concrete protection sphere, you know. So going into that place is difficult and requires bravery, actually, because you don't want, like, it's not a nice place to go emotionally, but oh my god, does stuff come out afterwards and loads of tears come out physically afterwards. It's exhausting and it's pretty splattered the rest of the day. What's really common with EMDR is to have extremely vivid dreams the next two nights is your brain is just processing all of this stuff that you've dug up. And that's certainly been the case with me, and also disrupted sleep. And I think one of the reasons why I had insomnia last night is because I had EMDR two days ago. I'm in the pattern of having two bad nights sleep afterwards, but all of this together is also showing me that, physiologically, it's done something. If I just sat there and just buzzers were just going off in my hands, I don't think it's going to have the same impact in terms of knocking me out, giving me these vivid dreams. It's a purge, but in the process of doing a purge, it's not necessarily very nice, but what I can say is that I'm not having that overwhelm of emotions. I'm not having that 10 minutes in the morning where I need to lie down and cry for 10 minutes. So that's gone. And actually, my general degree of coping emotionally with my today, with my day. And it seems like that's a mad thing to say, but in Long Covid, it's not. We all have to cope emotionally with our day, and my ability to do that is so far greatly improved. Now I think it's still too early to say whether I have unpacked enough of that broken steam engine to let enough pressure out for the recovery to start to happen. I think you have to look relatively long term at this. It's a process of months. I think before you're going to start to maybe see something come out, even if it's just helping me on the mental health front, it's worth it, and I've rolled the dice on much dodgier things than this, and I probably will again if it doesn't work.

Emily Kate Stephens (24:39): So actually, what's interesting about your talking about the response to it is it's not dissimilar to things that I know people have tried. You've tried psilocybin, Ayahuasca, Holotropic breathwork, there are these things that push the body in a similar way. I'm not saying it does exactly the same, but the after effects and actually some other forms of therapy do that similar release. I think it's really interesting. The crying thing, I have always been someone who cries a lot. I cry. I mean, I'm known for crying about the happy things. A friend told me that they were pregnant the other day. I cried for an hour and a half. There are certain things, but the release that I have found from allowing myself to cry with grief and to process that grief through my body, physically through my body, has been incredible. I believe that there are only certain ways that you can let cortisol exit your system, and it's through sweat and tears, essentially, so especially for those of us that are possibly not able to go out and sweat in the way that we used to in going for a run or a heavy gym session, perhaps that release has to come through tears. So if you're all out there crying, just let the tears flow, crack on, because I found it incredibly powerful. It actually took me, one of my yoga teachers giving me permission. I kept crying at the end of my yoga classes. This was through six months of this year. It's happened, but this started happening in the summer after, I was feeling much better, and I couldn't understand it. I just, I didn't understand why. Every time I lay down in shavasana at the end of yoga, I was just, I was crying. I wasn't feeling things. It wasn't like I was thinking about emotions. I just kept crying, and it was quite I was embarrassed by it. And at the end of one of my classes, I went and I said to one of my teachers, I'm so sorry. There's nothing wrong with your class. I don't know why I keep crying. And they said it's because you're processing a huge amount of grief. Just allow it to flow through your body and just let it out. Don't keep that stored up inside you.

Gez Medinger (27:11): So in terms of strategies, which I think was, we sort of started the EMDR, but generally speaking, if you feel yourself getting a bit overwhelmed, if you can find a safe space to go and have a cry, do it, I feel so much better. I mean, I feel a bit punched in the stomach afterwards, but I feel a hell of a lot calmer. And all the things I was angry about or upset about suddenly feel like much less of a big problem. It's very cathartic. It is very cathartic, and I think fundamentally as well, it is about processing. And if we don't give ourselves a chance to process, then we are just going to put the nervous system into a much higher state of frazzle, for want of a better word,

Emily Kate Stephens (27:49): My major coping strategy remains the same, and I touched on this in our last conversation, and that is breath work. I do various types of breath work and meditation, but similarly to that idea of going for a cry, I have built it into my day to such an extent that when I feel that anger rising, and let's be honest about this, Covid gave me a rage that I have never previously experienced. For me, tie that in with potential perimenopause, and wow, it was a powder keg. My children say to me, now that I was quite an angry person. They're very happy that I have found ways now they're like you are a different person. You are so much nicer, so much calmer. And my immediate response is not anger anymore, which it was for so long with the illness because of that. Like you're saying, there are points at which you can't really kind of process your emotions. Sometimes that will come out in tears, and sometimes that just comes out in a burst of rage, because it's that pressure cooker feeling that I've got to let something out of here. So for me, the breath work, constant breath work, and I trained as a Buteyko practitioner, which is very much about the chemical balance in the body rather than just and I'm also trained in nervous system regulation breath work. But the Buteyko is absolutely fascinating in terms of some of the studies that have been done into Long Covid, looking at the acid, alkaline balance that has potentially been pushed off kilter in others of these conditions as well. And this is not just infection associated chronic conditions. There are so many conditions that you can apply this to, and I have been working with people who have asthma, who have anxiety, and bringing the body back into balance with this Buteyko method. It's this slow shift, but ultimately it's quite profound, and I feel so much better for it. So that remains my strategy. And I suspect that will be, we've talked about this, I think I'll have to do it for the rest of my life. I think that will have to remain my strategy. Remain my strategy, because actually, I think I'm a better person than I was before for putting that into my life.

Gez Medinger (30:19): And even if you could insert that back into your life from before the Long Covid episode, you would probably have better balance in your life if you could put that into your otherwise inverted commas, healthy version of yourself too.

Emily Kate Stephens (30:30): Yes, but there are so many times now that I look back and I realize that there were moments in that healthy version that was so unhealthy and so, yeah, to the point of repression. And I wouldn't have viewed myself as being someone who was repressed, but the way that we were trying to fit everything inside, I love that Chernobyl container that you described in terms of encasing trauma, but I think that is what so many of us have done with so much stuff in our lives, whether it is presenting ourselves in a certain way, wanting to appear as a certain person, making sure that we are perfect in some way, making sure that we are productive and always striving to be the best and never given permission to just collapse and fall apart. Reflection is a wonderful thing, and we obviously can't do anything to change what we did to get to this place. But I love the strategies that I'm building for a better person to be a better person now. So tell me something that you are excited about right now, in terms of anything within this energy, limiting illness, space, whether that's scientific breakthrough, whether that is a strategy that you've read about, or someone that you think is doing amazing work, tell me something you're excited about, Gez.

Gez Medinger (32:08): So I'm going to give you two things. One's a practical one. It's this. So I was going for my daily 200 yard walk out in the sunshine a couple of weeks ago, and I bumped into a neighbor, and he goes, Oh, hi. How are you? And I said, Well, to be honest, still haven't really come out the whole Long Covid thing. He's like, Oh, gosh. Then you have that whole little discussion, and then the dreaded three words come out of his mouth. Have you tried? I'm like, No, God, whatever he's gonna tell me, don't have time for this. I'm pretty sure in the last six years I've done or heard about or dismissed or whatever he's gonna say. But he said one thing. He said I had Covid a few weeks ago, and I took some lion's mane afterwards, and I bounced back really fast, and I'm like, lion's mane. I'll just stick that into my AI and get a quick thing on lion's mane. And I went, huh, that's kind of interesting. And let me just throw out some stuff about what lion's mane does. It's a mushroom. And you take the fruiting parts of whatever it is, it gets turned into pills, basically. But it's a natural thing, and so what does it do? It contains nerve growth factor. So NGF stimulation contains two key bioactive compounds that cross the blood brain barrier and stimulate production of nerve growth factor, which are basically proteins essential for neuron survival, growth and repair. This is particularly relevant given emerging evidence of neurological damage in Long Covid I'm like, huh, haven't heard of much else that does that for all the neurology type symptoms, and then you've got anti inflammatory effects. It reduces pro inflammatory cytokines, including IL-6, TNF-alpha, and then activates a bunch of other pathways. Well, those are all hot topics in Long Covid neuroprotection. Apparently, preclinical research demonstrates protection against oxidative stress, a bunch of neuro protection and then a bit of gut brain axis stuff, because it balances gut bacteria and protects the gastric lining, reducing what is sometimes called leaky gut. So let's try this. And I was having a pretty crashy week. I tried it, and I have to say, I definitely felt cognitively clearer for a few days. Now, I only took it for a few days because I started getting a headache as well, and I wasn't sure if that's because I was overdoing it or whether it was a consequence of a lion's mane. But once I'm out of this current crashy period or things have settled down, I'm going to reintroduce it and so I can see if that headache is a side effect of it, or whether actually it's just genuinely good. So we all dread the have you tried thing? But maybe there someone on the street chucked me a bone that was actually useful. So I'm not a fan of supplements generally. I think they're mostly useless. But I'm interested in this one, and I'm going to try it. Once things have settled down, I can get a clearer steer on whether it works for me.

Emily Kate Stephens (34:47): I think this would definitely be something that for us to dig into deeper as well in a future episode, whether that is talking to people about some of the studies that have gone on in it, or talking to people who have experience of it. Because lion's mane, I believe that you could actually buy it in the supermarket. Now, one of the big things with the supplement is that you can't necessarily guarantee what is in there that you're taking the correct dosage, that it's pure. So I think that's a really, really interesting area for us to dig into and look into in upcoming episodes. Tell me your second excitement.

Gez Medinger (35:25): So my second one is a study that was published a month or two ago, and doesn't sound very sexy on the surface of it, but I think it's super important, and it's what I call the EpiSwitch study. So there's a company called Oxford BioDynamics who have designed this proprietary test that enables them to look at chromosome conformations. Now, what are chromosome conformations? They are potent epigenetic regulators of gene expression and cross tissue exosome signaling. How's that for a mouthful. What does it actually mean? These chromosome conformations are bits of looping DNA inside your cell nucleus that help the cell function healthily. So it's a genetic expression that just makes your cells work properly. And what they've done is developed this proprietary test, and they can look at these bits of wrapped up, folded, looped DNA, and by looking at these chromosome conformations, they were able to correctly identify with 92% accuracy the people who had ME/CFS, and they were also able to exclude with 98% accuracy the people who were healthy. So in terms of effectiveness of a test, this is surprisingly good, especially for an initial trial. Now there are all sorts of questions about the trial, generally conflicts of interest, small sample numbers, but everything has to start somewhere. The reason why this is interesting is because, in my opinion, all developments of effective future treatments has to start with an effective test. If we can't test this thing, and if we can't measure this thing, we can't put the right people into trials, and we can't get trial results that work for a certain group of people. What they even found by looking at these chromosome conformations, was that they could also potentially phenotype people with different types of ME/CFS as well by looking at the structure of these DNA strands. So again, this is absolutely key, and it's a confusing and abstract study, but for me, this is potentially the little magic ingredient starts the alchemy in the witch's pot of scientific research that enables, suddenly, it starts to bubble, toil and trouble, and actually to spit out some good stuff out of the witch's pot, which look like effective treatments, but we have to throw this in first to be able to make the alchemy work.

Emily Kate Stephens (37:45): And that is essentially that looking for the biomarker looking for, I actually was speaking with the NIH recently, and that was one of the things that Dr Vicki Whittemore has been trying to do across the board in these conditions, is that there is just so much difference in the way that things are studied, so much difference in the way that data is reported and data is looked at, that we don't really have a cohesive platform from which to start in terms of this. So it needs unification, but certainly that actual biomarker, what are we looking at, or how can we test this is the starting point in terms of knowing what we're looking at, knowing what we're dealing with in each of these cases. I'm really, really excited by the sheer volume of research that is going into this space, in studies like that, small scale studies, in huge scale studies, I was lucky enough to attend several conferences at the end of 2025 Long Covid conference, Long Covid And ME/CFS, multiple different things, and the work that is coming out, and the difference now between what I am seeing and reading compared to what we were seeing and reading five years ago is so vast, and when you look at it on that scale, it seems like we're making progress.

Gez Medinger (39:07): Just got to imagine that we're a lump of granite and we're looking at research on a geological timescale, and then it's happening really fast.

Emily Kate Stephens (39:19): It's happened really fast. But I'm also painfully aware that I am lucky enough to be able to attend those things, access those people, and the information that comes from those studies, in terms of how that is filtering down to the patients and filtering down to the people with these conditions, it still feels like it is painfully slow, and it still feels like we do not have a treatment. We don't have a treatment for so many of these conditions. So I'm so excited to try and get some of what I'm seeing, reading, hearing there in the scientific and medical world, and bring it into our forum and try and disseminate it, try and get some of the information to people in a form that is actually helpful, because hearing about high level studies that have been done with 30 people on the other side of the world, I appreciate is really, really frustrating for some people, and we also have this discrepancy between things that are available in other countries and not available in the country that people are in. We are trying to bring it all together and offer some cohesive information to people about what is being done, and hopefully down the line that will filter through to the way that people are being treated. We would love to hear your thoughts on this conversation today, but also on what you want us to dig into going forwards what is missing in this space in terms of things that you can access as our audience, and what would you like Gez and I to talk about. Gez, it has been an absolute pleasure to have this conversation with you today. Thank you so so much. I know that you are feeling awful, but I'm really excited to have you on board, and I'm looking forward to us crafting something that's useful to people, and I would really, really like to hear everyone's opinions and feedback on it.

Gez Medinger (41:29): It's an absolute pleasure to be here, and I can't wait to kick on and bash heads over tricky subjects.

Emily Kate Stephens (41:40): Yeah, could end up with some quite differing viewpoints here just because of our differing experiences. So I think that's what is going to be, hopefully interesting, is that we can bring that duality to it and approach things with two points of view. Thank you so much. We look forward to hearing from you all. Thank you for listening to Make Visible. Please do like follow or subscribe to listen to our next episode where we'll be uncovering more insights into complex chronic illness. This was brought to you by the team at Visible, a group of scientists and engineers whose lives have been affected by energy limiting health conditions, we're building wearable technology that's helping 100,000 people measure and manage their complex chronic illness. To find out more about what we're working on and how Visible could help you visit our website at makevisible.com

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