Transcription
So, uh, hello to everyone. This is the first of, uh, my live Q&A's for members only. If you're watching this and you're not a member, it's because you've come from the future, and it's probably at least three days from now when this will go out to general release. Uh, but in the meantime, I'm going to deal with a bunch of questions I've been sent in advance and stuff that comes through the chat.
Um, so the first thing I'm going to talk about is the lightning process. Um, and what a thing, right? This is an incredibly polarizing subject, and people seem to go one way or wildly the other way. And like with most things, I sort of fall somewhere slightly different. Um, and I think the way I come at it is this: there is too large a number of people who are coming out of it saying I'm better or I'm 90% better than there should be if it was just if there was nothing to it. So I think in order to understand why that might be, and I ought to also just point out that I think it's still a minority of people who do the lightning process who have long COVID or ME/CFS who say that and say I'm doing better. Perhaps, from my completely anecdotal sort of read of people I've spoken to, maybe 20%. Right? But that 20% is still 20% more than 0%, which is what it should be. So what's going on there?
I, my personal take is that it completely depends on what's going on with you physiologically. The lightning process isn't going to work if you've got Ebola, right? It's it's not going to work if you've got, I don't know, leukemia. Um, so why is it working for some ME/CFS and why is it working for some long COVID? Um, for me, I think it comes down to what's going on in the body and whether there's a persistent trigger or not. So, what we've seen with ME/CFS in the past is that you can have an infection of some kind that then goes away, but that sets up this doom loop that's going on in the body, which is this nervous system, immune system, metabolic system interlinked doom loop. And I won't talk too much about the various theories for what's going on there. But for those people who have had, uh, you know, an infection that has come and gone but left them in this state, for those people the lightning process could conceivably work if it can somehow use that neural plasticity to basically reprogram the brain a little bit and just help the body trip back over itself so it can get out of that doom loop and find its way back to homeostasis.
So let's take me for example: when I was 21 and I had glandular fever. That's mononucleosis or EBV. Um, I was absolutely whacked for a year, but I went skiing at the end of it. I got a job working as a ski guide, and I got out there and I was all over the place. But after about—I went very easy for the first few weeks—but after about a month I was better. Now what was going on there? You could say that was a bit Paul Garner-like to be honest. But what I think was going on there was a version of a trigger which had long since passed, and my body was just waiting for the right environments and the right setup for it to basically find its way back to homeostasis, and the original trigger had gone, and it was just how do you get out of that doom loop? And I think in that scenario I could have been a candidate for potentially something like the lightning process.
Am I now, for long COVID? In my honest opinion, no. Because I think if I was going to have got better in the same way, I would have done already. I'm five years in now. My my feeling is that the majority of people with long COVID have some sort of persistent trigger in their systems: spike protein, active latent virus, reactivated other viruses, um, whatever that might be. And for those people, I think you're sort of knocking your head a bit on um on a brick wall if you think the Lightning Process is going to get rid of that persistent trigger. It's not. But how do you know if you do have that persistent trigger? Right now, we've got no idea, right? Um, we don't have tests for it. So, there's not a lot you can do.
So, is it worth trying the lightning process on the chance that you're one of the—I'm going to make up a number here—20% of the people who perhaps are in a doom loop without a persistent trigger because their body has resolved that trigger, and maybe you'll be one of the people who responds to it? Is it worth a punt on it? I think the hard thing with that is a) it's expensive, and b) um you've got to really buy into it for it to work, and it's hard to buy into it for it to work if you uh if you're thinking there's a 20% chance I'm in the right category that this could work with. Right? So, um I I I I don't want to give advice on this. I'm not going to say it's it's good, it's bad. Um, it's a thing that people can try, but it is expensive, and there's only probably a small chance it would work for you, even if you could make yourself believe and unsynicize yourself that it might do something. For me, I'm not in that category. I don't think it would work for me. I don't think I could brainwash myself into believing it. So, it's not something that I'm going to try personally.
Um, so that is my um slightly more nuanced perspective rather than one of the two poles on the subject. As for how it fits into mind-body stuff generally, I think mind-body is a thing; in my opinion, there is a connection, but again it's not going to get you better by itself. So um it's more about making sure that you are creating an environment that doesn't make your symptoms worse. And this is just part of pacing really. You know, breath work, meditation, all of that sort of stuff; you know, anything that gets you wound up in a not-good way is not good for your nervous system if you're suffering with dysautonomia. Um, so any form of mind-body approach that mitigates that is a good thing. Is it going to make you better by itself? Probably not. Um, but should it be part of general good practice along with pacing for most of us? Probably.
Um, the other thing I was just going to say about the lightning process in terms of how you phenotype people, persistent triggers and the rest of it: if you're someone who got COVID really badly and was in the ITU or the intensive care unit as we call it, then a lot of those people—the name of the study that found that looked at them is currently evading me—um was anyway, there was a study that was done early days that looked at them and found there was a very high percentage of damage basically from the virus uh for people who had very severe acute infections. Obviously, the lightning process isn't going to do anything for them. Um, my personal opinion on that subject is that most of us who had a relatively mild initial infection aren't necessarily suffering damage. I think it's more about the body being dysfunctional rather than being eternally damaged. And yes, there's all this recent stuff about mitochondria being damaged, but the body is able to make new ones. Um, it's able to generate new cells. It's just how do we get the body into a state where it can do that better? And that's why I'm going to go out and do some more fasting tomorrow. Actually, tomorrow morning.
Um, so that's the lightning process. Let me dive in into the chat. Uh, forgive me if the pace of my output slows a little bit whilst I just scan through it. Normally in this scenario, there'd be somebody else to bounce off, but it's just me, so excuse me whilst I process. Um, I do have some other questions as well, which I can drop in as well, but I'll just see if I can pull something out from the chat.
Um, have I seen any info on long COVID and reduced cardiac output? Um, I think I have actually, and I'm struggling to place—I'm struggling to place where I've seen it. I would be resorting to Google, but I think I have seen that. Um, we've certainly got stuff that shows oxygen um, transfer to tissues being impaired, and I've done PET scans of people's brains showing that on average we're only getting 60% of the oxygen to our brain that we should. Um, it's all part of the same malfunction in my opinion.
Um, right. Um, happy birthday to Pam, it seems. Um, uh, boom, the ME/CFS charity has banned the lightning process from being mentioned. Um, yeah, I think that's fair. So, Paul Garner, um, yeah, scuba hobby. Um, from Baron, um, yeah, funnily enough, I spoke to Paul Garner in the early days, and he was a good advocate for the community in the early days. He wrote some brilliant pieces that got published that did a really good job of describing the experience, and he got taken seriously because of his position as a professor, and it really helped us as a patient group be taken seriously. When you have a professional say, "Hey, this is real. It's happening to me," everything that happened since is a bit unusual. He's boxed himself into a position that isn't backed up by the science. And I don't know why he's continuing continuing to dive down that route. Um, he actually um emailed me not so long ago and sort of wanted to reach out again, and I I didn't follow up on it. Um, it wasn't—I don't find myself on that side of the fence, so it wasn't a discussion I felt would have been helpful to continue.
Um, boom. Um, oh, that's really interesting from Foyer Salamandanda about the side effects, the emotional ones and four hours a day Zoom time for three days. I couldn't do that. Like 45 minutes on Zoom a day and I'm absolute toast. Um, still high heart rate and if you could throw light on needing to—I want—So in theory I think I ought to be able to bring a message up on the screen so I can talk about which one I'm trying to answer. Just going to pin one. Oh, so it's appeared at the top of the chat. I think maybe that's the best I can do.
Um, so regarding dehydration, if you're dysautonomic or you're a bit POTS-y, hydration is one of the most important things you can do. Um, I've just, uh, recorded a series of videos with Visible, which is the wearable that, um, helps track chronic illness. Um, and we interviewed David Pacino and also Dr. Boon Lim. And Boon Lim was brilliant at talking about hydration. I don't know when we're going to have that video out, but essentially it's one of the easiest and most important things you can do if you suffer with low blood pressure or your POTS-y or your dysautonomic or you just struggle when you're being on your feet a lot. And the electrolytes are also very important as well. So other than saying yes, have it, um but it's also a real thing um when it comes to dysautonomia and one of the best um coping strategies, mechanisms, management strategies to deal with it.
Um, Pam, um I am incredibly happy to hear that uh you are almost back to normal. That is a great birthday present.
Um, oh, this is a really good one. Um, let me see if I can just pin this. Um, so what treatments are working for EBV reactivation? To my knowledge, there isn't really anything that directly makes a difference to EBV reactivation. You've just kind of got to wait it out. I know there have been treatments, trials, but I don't think they're available yet. Um, the world of EBV research has been going on for 25 years. I know Danny Alman was very heavily involved in it. Um, and but to my knowledge there isn't anything that you can get prescribed at this point in time or even get privately or anything like that. Um, and the second part of that was any themes among long COVID recoveries. Um, if there is a theme, I would say it's this: it's people who stop to prioritize recovery. And what I mean by that is get themselves out of a pattern of behavior. And I say pattern behavior that might just be having a job um or living in a certain place or doing things in a certain way and making a very uh deliberate conscious change to the level of stress um and energy cost that they're undergoing at any given time. If there is a theme, I would say it's that that people have gone away for three months. They've gone to live with grandma. Have gone up to, you know, do something else outside of that environment or they've stopped working, and then they find, you know what, that was enough for it to tip the balance for me. But there's no guarantee in doing that, right? For me, I think that's the sort of thing that might work if you're on the cusp of like turning a corner, but never quite doing it. Any sort of incremental change you can make might help you just get past that point. But if you're not quite there, um, if you're like right back here, then, you know, those sorts of changes might not be enough. I I I tried something similar. So, end of last year, I took myself out to Cyprus for six weeks. And my goal there was just to do radical rest, um sea air, sunshine, not too hot actually because the time of year it was. And I thought, you know what, I'll just see if it makes my symptoms better. And actually, it didn't. And that was a bit of a shock to me. And in a sense, it was also encouraging because it meant, okay, I'm not doing too much in my life at home. I'm just about managing my energy envelope. But that was an interesting experiment for me. But taking that kind of break didn't create the shift for me it needed to.
Um, yeah, Susan, I totally—just going to pin you there—I totally feel you on being disappointed with where Paul Garner ended up.
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Um Um Okay, so Andrea Aara is asking about fasting tips. I'm going to do those at the end. Um, and yes, ongoing crashes. So, yes, this was one of my questions I was going to, um, uh, I was going to talk about. Let me just bring it up. Um, by the way, could someone just say if these pinned messages are actually appearing at the top of the chat so you can see what I'm talking about? I hope they are.
Um, um, what's going on with frequent crashes? Generally speaking, I think crashes can be broken down into two categories. Um, there's the dysautonomic crash, which is what happens when—if we're going to buy into the polyvagal theory, which is something that I do buy into—Um, and essentially the the way that works is that you've got parasympathetic, sympathetic, and then you've got immobilization. Um, so that's rest and digest, fight and flight, and then the body goes into freeze at the top. Um, and there's the dysautonomic crash, which is essentially where the body goes into freeze. And then you've got the sort of the metabolic crash, which is the ME/CFS type crash, where you spent too many spoons and then you have this absolute horrific fatigue crash. Um, I think different things can drive them both. If you're dysautonomic and fit into the ME/CFS sort of diagnosis as well, then you can very easily have both at the same time. If you've had a really full-on day, um, for me, I can sort of tell which one because I get both. Um, and I'm sort of getting better at identifying what are the cues for each. So, a really concussiony feeling for me where I feel like if I move my head, I can feel my brain bouncing around inside my skull, really light sensitive, really um uh sound-sensitive as well. Can't really think straight. That's for me. For me, that's—and fatigue—that's a consequence of an ME/CFS type metabolic energy crash. And then the dysautonomic one, the freeze one, often has different symptoms, and I can usually tell because the rest of my autonomic system goes weird. So, um so I'll get racing heart rates. Um, what else happens with that one? It's all of the dysautonomic stuff basically gets turboed up for me. Um, and that's what I'm identifying as that sort of freeze crash because whilst it does that, you can't do anything except stop.
Um, so I think with the ongoing crashes, I think it's really important to try and work out what category you're in and which ones of those you're you're being hit with. Generally speaking, it's either a consequence of continually doing too much or there being another trigger that's really making your symptoms much worse. And that could be food. If you're really ME/CFS-y, you could be—if if, you know, if I was to eat the wrong food for days, I would be caught in a continual crash as well. So, it's about trying to identify what the trigger might be, whether that's stress or something you're um breathing, smoke or something, or whether it's something you're eating or something you're drinking or whether it's you doing too much. But again, we don't really understand crashes yet. We don't have really good science explaining exactly what's going on. We've got a few nice hypotheses, you know, like the one I did with the film I made with Professor Klaus Worth recently. Um, he, you know, his explanation for what causes a metabolic crash is pretty compelling, but we don't have proof for it. Not really. Um, and the same thing, the polyvagal theory is just that. It's a theory. So, we're just trying to line up the things that make sense for us that seem to make sense not just for us individually, but across us as a patient group and saying, "Okay, this seems like a thing." But that's kind of all we've got right now. It's this seems like a thing. Um, and what seems to help and you know, as with so much of long COVID, you have to be a bit of a detective on your own condition because no no two of us are the same, and what I can survive you won't and vice versa. Um, and there are similarities between us, but what, you know, just I I might crash in a completely different way than Bob over the street. So I I don't—it's very difficult to give advice other than to help give people the understanding about what we think might be things and then helping them build their own puzzle basically.
Um, any thoughts on the inflammation in the body? Um, so—oh, thank you for saying you can see the pins by the way. Let me just put this one up. So inflammation is—I I think irrefutably a thing. Pretty much every study that we've seen that looks at inflammatory markers finds all sorts of stuff all over the place. Um, we've got all sorts of immune system markers as well. Um, there's a recent polybio study that looked at some of these which is quite interesting as well. Um, mast cell activation is inherently an inflammatory condition. um, and any—I mean, and it depends how how you look at it, but we've got multiple different things here which are causing inflammation um from overdoing stuff and what happens on the muscle level which causes localized inflammation there to what happens on a neurological level when we do too much or when there's a trigger of some kind. Um, it's um one of the simplest ways for me of actually making myself feel slightly better is taking ibuprofen. And it seems like a real sort of, you know, I did I did a talk with Dr. Bonita Kane recently, and she said, "Okay, you can't say that on on on this doctor's channel because we can't encourage people to go and take ibuprofen, but it'll give me a 20% boost." If I'm having a day, then it'll give me a 20% boost. And the reality is is that probably three or four days out of the week, I will need to take at least one or two hits of ibuprofen a day because I just can't function otherwise. And that 20% boost just gets me to a place where I can think straight. Um, and if—why does ibuprofen make you feel better? Because it's just dropping the inflammation. And for me, a lot of it's neuroinflammation. So that's the light sensitivity, the sound sensitivity, the headaches, um, all of that.
Um, yeah, inflammation is key. Um, and there have been talks about trying to use steroids to try and calm that down, but the problem with that is that again, it's a very short-term fix, and you don't want to be on steroids for a long time. So it's—that's not really uh feasible, but there were talks for a while of using, you know, cortico- not cortico-steroids—stuff like prednisone and stuff—maybe that is cortical steroids—my brain's gone a bit fuzzy, so excuse me.
Um, any similarities on—new message here—between long COVID and overtraining syndrome in athletes? Seems a metabolic impact is similar. Yeah, so look, I I think that the reason why we see so many people, a disproportionate arguably proportion of people who are very active in their previous lives getting long COVID is because their bodies were revved up to the max. I certainly was. I can speak for myself, you know, I was running my body into the red for years um before COVID came along, and I'm pretty sure that had a large impact on why my body then crashed um and developed long COVID and got stuck in that doom loop. And this seems to be quite a common story. Obviously, not everybody because nothing is for everybody in long COVID. But fundamentally, I do think there are some very similar mechanisms going on between overtraining syndrome and long COVID. Um, we don't know exactly what they are though, unfortunately.
Um, uh, any suggestions, thoughts on tests for gut microbiome and microclots? So, you would need to speak to a microbiome specialist. I did speak to one on my channel a few years ago. Um, they'll they'll get you to do various tests, and then they'll look at you; they'll look at the test results and they'll say, "Okay, eat more broccoli, eat less cabbage, whatever." That may work really well for you. Some people find it really helps. Um, I don't think it's at the top of the waterfall, but for some people, it might be causing a large amount of their symptoms. Um, it's one of those things to knock off if you can, if you feel like it's a big part of your puzzle. It—you might want to take the punt that this might unlock improvement for you, but I don't think it's going to necessarily be the whole picture.
Um, as for microclots, um, the—I would say a test here is somewhat redundant because what we've seen is that pretty much everybody with long COVID has them. And what we can't quite work out is which symptoms they're causing because we're also seeing people who've had COVID and recovered who have them too um, but don't have any symptoms. So, we're struggling to draw a link directly between the microclots and symptoms. Um, what I would probably say for this is rather than trying to get a test that won't tell you anything that is particularly helpful, you could just try lumbrokinase and nattokinase um as supplements; you will feel rough for a few days. Most people normally do when you start them. Um, and then try and stay on them for two weeks or so and see if you start to feel a little bit better. Um, you will notice if you cut yourself, they actually do work as anticoagulants; you will bleed more um and it won't clot up as quick. Um, some people respond really well to that. Um, and I would say it's just—that's another one thing to try if you haven't tried it yet. It—you might find that you benefit significantly once you're on them. For me, I didn't notice much of an improvement. Um, and I have had my blood tested, and I was positive for microclots, and I have also done two or three months of proper anticoagulants, and it didn't make much difference.
Um, oh, Robin's—okay, place pin message—so any thoughts on melatonin, LDN, CoQ10, riboflavin, alpha-lipoic acid, etc.? So, all of this stuff is—there's really strong logic for each and every one of these. Um, things like CoQ10, yeah, I've tried it, didn't do anything for me. Alpha-lipoic acid, I've had IVs for that as well as the tablets; hasn't done anything for me. Riboflavin, yeah, I take that. That's worth having. Although, I've stopped taking those supplements since my last one. But generally speaking, the B vitamins are worth rolling the dice on because why not? See if you feel better with them. Um, LDN, LDN's a big one. Um, it seems that for some people it's a real game-changer. Um, but not everyone. And I, again, I I I'm a bit short on my sources here, but I remember reading somewhere that only about half of people have the
Appropriate genetic receptor which responds to, um, the drug, essentially. And that's about half the people. And so if you're in one of those people who don't respond to it, then you're not going to.
So I've tried LDN, tried to titrate myself up from the recommended starting thing, and I went on—I was on it for about a month maybe—and I didn't notice any difference. So I'm probably one of those people who didn't benefit from it, but some people it makes a huge, huge difference. So, and seeing that it's about half of people, that is something where it almost is worth rolling the dice on. You'll need a private prescription. Um, I think there is somewhere online actually that you can sort of get that sorted out all online, and they can sort of do a doctor's prescription for you online. I can't remember exactly where that place is, but it's not too difficult to get hold of. Although the pills themselves will cost you some money.
Um, uh, Andrea N writes, Andrea N writes, "What research is doing on oral long co and COVID ton?" To my knowledge, I'm not aware. There was one study recently that was looking at it, and I can't remember what it found, but the answer is I think it's one study that didn't find anything particularly ground-shaking. So the answer to that question is not much, unfortunately.
Um, okay, right, let me—if you give me two seconds—I'm just going to see if I can raz some old questions, uh, which people have me in advance to the chat. Here we go. Look at this.
So, this is a question from Erica, uh, about, um, how can flu and other infections affect long COVID? Um, is my body more vulnerable to damage? Um, so the second part of that I don't think—I don't think we're talking about damage here per se. I think we're talking about a system that is not working properly, and what happens when it gets another infection can go dramatically one way or the other.
So weirdly, I have heard of two separate people this year say they got the rancid bug that was doing the rounds in winter, and they were knocked out for three weeks, and since then the long COVID has got loads, loads, loads better. And this seems weird. I can only assume that it's something like what we saw with some of the people when we had the first vaccine doses where some people would dramatically get better, and I suspect what might be happening there is that it triggers—either the vaccine or the infection triggers an immune response that knocks out their persistent trigger—and hey presto, boom boom, the rest of the body sorts itself out to some degree.
Um, so in some cases, getting a nasty infection seems to randomly, jamily sort your long COVID out. In other cases, it can make it much, much worse. I don't have numbers on this. I did have numbers on the vaccines, and it was kind of evenly split between the people who felt better and the people who felt worse. Although there was a variation in terms of the brand—like Moderna was different to Pfizer was different to AstraZeneca. Um, but—and different on dose one to dose two weirdly between them all. Um, but when it comes to random infections, who knows?
Um, I mean, it's—it's a little bit like a chickenpox party. I don't know if you remember people used to do that in the old days to try and make sure that kids had chickenpox parties early. Maybe it's not exactly like that. Um, but it's—you're rolling the dice. It's a lottery. Um, I personally wouldn't want to get a random infection on the hope it makes me better. Um, I think most of the time it's probably gonna—it's—it—it's certainly going to make your inflammatory responses worse in the short term, and there's no guarantee it's necessarily going to knock out any, um, any persistent trigger that may otherwise be there.
Um, right. Let me find another question. Uh, this is one I think I don't know. Salamandanda Foyer. Salamandanda. I think you're in the chat actually, but this is one you sent me earlier. Um, do I still have the feeling of—this is weird—as in catching yourself being surprised when symptoms hit you? Yeah, totally. Although it tends to happen on the better days because most days I'm mostly aware of my symptoms all the time. Like I feel quite—most of the time, every day. Um, and on the better days where I haven't felt—for like, wow, eight hours—it's amazing how just in that eight hours you can get to the place of almost thinking you're normal again for one short moment until you do something and then your heart goes—for me anyway—or whatever, whatever it might be, either my heart goes or I feel dizzy or I get palpitations or, you know, something idiotic like that happens. Um, or I find myself as part of the conversation and just suddenly my brain just starts—I'm like, "Oh, it turns out I can't actually understand English anymore."
Um, so yeah, I—I really do get that—this is weird. Um, really quite frequently. Um, I think that it just fundamentally is weird, right? It's so completely out of any of our normal experiences. And this is why other people find it so hard to understand what the experience is like because it's not even like—it's just a steady flat line of—flat flat line of experience that you can describe, and it's constant. It's not. It's completely nebulous and shifting, and there's that whole thing of—well, how come you can—you can't do this today when you could do it yesterday? Because who knows—that's just the nature of it.
Um, let me—let me see if I've got any more questions lined up in advance. Um, this is one from Kapowski. Uh, I have tried benfotiamine. So in fact, let me—before I put that in—I don't know if this is a question for me, Scott. Um, but I met a guy whilst I was out in Cyprus who said he had had terrible long COVID for three years. He started taking high-dose benfotiamine and along with the other co-actors it needs like—so a thousand grams twice a day. I think 1,000 grams—1,000 milligrams maybe twice a day—and over three months he completely recovered. Um, and I thought that sounds bloody brilliant. Maybe that's the key metabolic support we need. And um, I tried it, and I suddenly had a really good week, and I was like, yes, it's the end of the tunnel. I can see it. Uh, I just kind of reverted. It seemed to give me a temporary boost. Um, and uh, and then I just ended up back where I was. So, I am no longer taking high-dose benfotiamine. I don't know if that question is for me, but I've asked it anyway.
And on that note, this is from Kapowski. Um, what meds, OTC pills, and supplements am I on currently which have worked well in the past? So, what I'm on currently, uh, fexofenadine and cetirizine. That's H1 and H2 antihistamines. So those manage allergic reactions, but they also manage inflammation. And after my first fast, I stopped taking them during the first fast. And I came back, and I was like, "Yeah, I don't need antihistamines anymore. Four years or five years in them, and I've got rid of them." And uh, and then I'd go through this cycle of having five really good days, then five crashy days, five good days, five crashy days. And I thought—I started taking antihistamines again, and then suddenly the crashy days just went and got much better. So I think actually they help me manage some inflammatory reaction that's part of a crash, um, for me. So I still take the cetirizine fexofenadine. I also take low-dose SSRI—escitalopram—so 5 milligrams of that. Um, that—we've got a bit of evidence that serotonin levels are mashed up in long COVID, um, and SSRIs can help. Certainly I feel much better with it—when anytime I've tried to titrate off. No thanks—doesn't go well at all. So, I'm still on that. Um, and then mirtazapine, which is another antidepressant, but really helps with sleep. Um, and my function is very, very, very sleep-dependent. So, I need all the help I can get. So, I take uh a little bit—I nibble a bit of mirtazapine tablets at night.
Um, and as for other supplements, I take uh 10 milligrams of melatonin at night, a little bit of magnesium, a couple of 220 milligram L-tryptophans. So, that's my sleep regimen. uh mirtazapine, melatonin, magnesium, L-tryptophan, and all of my morning supplements got in the bin since my last fast. Um, because I realized I—I was feeling better without them whilst I was fasting. And I came back, and I thought, let's just see what happens if I don't start taking them again because it was like three mouthfuls of this stuff, right? Um, so now none of that. Um, and I'm better than I was before my first fast, so I'm not intending to go back on it.
Previously, I have found—as I've talked about on the channel back in the old days—B3 niacin to really help. Um, so in a crash, if I know I'm having a really busy day, might just give you a bit of metabolic supports. And I know we did—I did a study at the time that showed that B3 niacin genuinely seemed to help people as well. Um, so of the supplements that are out there, that one and the other B vitamins and take vitamin C perhaps. But I think I—I—it's very difficult to say with supplements because when long COVID does this anyway and you're throwing random supplements into the mix, it's very difficult to know what causes what. And this is one of the hardest things with long COVID is trying to work out the cause and effect. And I haven't, you know, worked out a clean way of doing that. It takes forever because you've got to be doing—trying to find a baseline for three weeks and trying to work out what the baseline is. If you do the scatter chart through there, what's the line? And then you introduce something new and then you try and work out the lines change, but then life changes and life puts different things at you. So, it's really hard to ever get any kind of steer on what supplements do stuff. My general take on them is that if you have a deficiency, plugging it will make you feel much better. So, get a blood test, see if you have a deficiency. I know some people have had big iron deficiencies, and so taking supplemental iron can help with that. So, it's worth trying to identify that, but I don't think they—they make that much difference to be honest.
Um, so Susan, you've just asked, let me just pin this up. Uh, yes, I will. I'll tell you what I will do. Um, I will put that—I'll find a way of—put—of writing that down somewhere that's accessible either in the chat on this at the end of the chat or at the end of the thing—whenever my brain falls over—which'll be about five—five minutes I think got left in my brain. Um, I'll write it in there perhaps. And if I missed any of the questions in here, I'm quite glad to see there's actually a bit of a community going on here which takes the pressure off me to make any sense because actually you're being just as helpful to each other. [Music]
Um, let me have a quick look for more questions in the—I've got one about fasting. So, yeah, let me talk about fasting a bit. Oh, and actually before I talk about fasting, phenotypes. Um, so here's a new one from Andrea about phenotypes. Um, curious about immune exhaustion versus overactivity, autoimmunity. Uh oh, it's just disappeared. And brain—brain food versus no brain fog. Or maybe that's brain fog versus no brain fog.
Um, so I think it's—there's two ways of coming at the whole phenotypes discussion. One of them is trying to look at biomarkers and trying to say, um, these are the people with these elevated biomarkers. These are the people with these weird biomarkers. And then you try and work out people that way and work out what groups they are. That's one way of doing it. That sort of top-down approach. Then the other approach—sort of bottom-up—which is where you look at the symptoms people have and you try and group them accordingly. There was the—I think it was the Recover study in the USA—pulled—they surveyed like 400,000 long haulers or something—and they came up with seven phenotypes, and I looked at these phenotypes. They sort of grouped symptoms together. Basically they said, look, here—there—there are these symptom groupings, and I looked at them and went—doesn't—I don't quite buy them as phenotypes because ideally what—what we would have with phenotypes is a clear mechanism and a clear pathology and relatively clear symptoms. Now obviously we know we've got loads of stuff going on in long COVID—it's like a tree, right—but we don't know how many things there are at the top, and we don't know how many branches there are going down, and when I say that I mean at the top of the tree we might have viral persistence, we might have persistence by protein, we might have reactivated latent viruses—it's going—my fingers here—it's all backwards on my screen—and then down here we might have autoimmunity, we might have MCAS, we might have inflammation, we might have metabolic malfunction, we might have dysautonomia, and then all the other stuff that comes off those.
So, how do we sensibly break them down? I think the one I've spoken about most recently that's most helpful, I think, for people is the simplest one of all, which is just—do you fit an ME/CFS diagnosis? And it's quite easy. Just Google that and just see—answer the question, see if you fit that diagnosis or not. Because if you do, there's very clear pacing strategies you need to do and spoons counting you need to do. And if you do that, you'll make your symptoms less bad. Um, and if you don't fit the ME/CFS category, then you may or may not be dysautonomic. I mean both groups—ME/CFS, non-ME/CFS—can both be dysautonomic as well, and both groups can also have other stuff going on like mast cell activation and other things like that—as—when it comes to things like autoimmunity—well, we don't really know that because we can't test for it yet.
Now, autoimmunity is heavily implicated almost across the entire patient group in my opinion based on the fact that—why do we have twice as many women suffering in just about every study of long COVID ever than men? And the only thing that ties up with that is it's exactly the same proportion as we get in autoimmune illnesses like lupus or rheumatoid arthritis or stuff like that. Um, and there's also a correlation with other things like rheumatoid arthritis. So, if you ever had rheumatoid arthritis before, it's going to get worse with long COVID. And if you—you know—and if you develop it whilst you've got long COVID, you'll notice that it gets worse on the bad long COVID days when the inflammation is worse generally systemically and gets better on the better days. I noticed—I mean, I've got a little bit of random arthritis in my finger joint here. And when I broke my wrist a couple of years ago, I've got a bit of arthritis in here now—post-injury arthritis. And both of those got way better whilst I was fasting and the general inflammation came down. And again, that's just an indicator tying back into inflammation. But how we break stuff up beyond going back to the phenotypes thing—beyond the ME/CFS and non-ME/CFS—everything's up for grabs there really—do we try and say okay—and I think it's—before I say that I think it's also so important that we manage to do this—we managed to get some clinical consensus on it because unless we treat the right—put the right people in the right trials—we're going to get negative results, and this is a drum I bang on about quite a lot because the B-cell trial—which everyone got really excited about—um, which was essentially dealing with, uh, GPCR autoantibodies if I'm—unless I'm much mistaken—um, it got a negative result, but loads of people in that trial said, hey, I feel loads better—so why are we getting a negative result? And we did—it was a slightly foggy what actually happened with that, but fundamentally it seems that this might have been a good treatment that is now dead forever—the company's gone—because of potentially poor selection for the trial, and we can't select people for the trial unless we know what group to put them in. So, we need to treat the autoimmune people with autoimmunity drugs. We need to treat the viral persistence people with antivirals. We need to treat the, um, you know, the T-cell exhaustion people with the right immune modulator and—and the rest of it. But we don't have any consensus yet about how to put people in each of these pots. And I think that's going to be unfortunately quite a long time coming. Um, and I think all of our treatment trials are going to be hobbled until then, unless we can get a treatment trial that flukily gets the right group inside it, um, to be tested or it's something that applies to so many of the patient group that you know that it produces a positive result. Anyway, um, that's kind of my take on phenotypes. Really, really hard is the answer because it's so many different body systems are implicated. Which way do you slice and dice, and there—Yeah, there is still no agreement. Yeah, unfortunately.
Joanna says, "Thanks, Jez. Brain gone now. I'm almost there. I've got about two minutes left." Um, obviously one size doesn't fit all, but breaking down by one COVID type would help. Yeah. Okay. Okay. I'm—Yes. So, just—I've got—I'm gonna answer two—two questions and then I'm going to go away and die. Um, it would be great to break down the different, um, groups of long COVID types and show the supplements that help with each type.
Um, yeah, it would be great to do this, but that would be pure supposition at the moment on both sides because the—the sort of the—the groups are—and again, you can slice and dice them 100 different ways. And as to which supplements will help, you'd be trying to leverage on logic. We have no evidence for any of them. So, that would be a piece of semi-fiction in my opinion if someone tried to create that at the moment with what we know. Um, [Music]
Um, and here we go. Um, have you heard any remission stories? There's one with monoconals in the US, and I was going to try remission biome before Twitter imploded. Yeah. So, monoconals, very, very interesting. Um, pity they're so bloody hard to get hold of and they're expensive. Um, there was that study in the US where they treated two people, they both got completely better. Um, this—for me—is another tick in the box that says viral persistence may well be a thing—at least for some or many of us. Um, and I would be—and the other tricky thing with this I think going forward is the different monoclonal antibody mixes have been set up to deal with different iterations or variants of the virus. And so we don't really know—maybe within any given infection we've had. I've had three. If I do have some persistent virus, which one's it from? Is it—is it an OG type from Wuhan or is it persistent from Omicron? I don't know. Both. So are you—and maybe the monoclonals just knocks out one. We just—there's so much we don't know. But if—if there was like some random monoclonal antibodies on the table in front of me, I'd be shooting them up right now to be quite honest. They're—that's one of the most promising avenues for me, but it's just a pity they're so hard to get hold of and so expensive.
Oh, thank you. Lovely message from Pam here. Uh, that's incredibly kind of you. I really appreciate that. Um, and very quickly, I'm just going to talk about fasting. Um, so there was a request from uh, from Andrew Early Doors. Um, here—any advice for someone going to a fasting clinic for the first time? Uh, so my advice here would be to taper down on caffeine if you take it, um, a week or so before. Stop eating meat if you eat meat about a week or so before. Start—you need to sort of, um, carb unload. It's the opposite of marathon running where you need to eat fewer and fewer carbs as you get up to the day and just decrease your general calorie count in the last three days or so. Um, other than that, don't expect—or don't put any expectations on yourself to do anything useful whilst you're out there. uh, just expect that the fasting and looking after yourself will be the only thing you do. Um, and they'll look after you. That's it basically. Um, it will be hard. Sleep will be horrible. Um, don't worry about taking supplements whilst you're fasting that help with sleep. That's quite important. Um, but speak to the doctors if you're still taking meds on which ones you might want to drop out. Uh, that's one other thing that you need to get proper medical advice for.
Um, okay. So, I am toast. Um, so I would just like to say thank you to everyone for being here. Um, it's a privilege. It really is. Um, thank you for all the support. I hope you've also found a huge amount of support from uh, inside the comment stream as well, which is awesome. Um, it's a really—just on a personal level—it's a really weird experience this—just to talk to yourself for 45 minutes, except you're not actually talking to yourself. Um, normally anytime I'm randomly chatting in this environment, there's always someone to talk to, and instead you've just kind of—there's no—actually the hardest thing from a pacing front, uh, is not having the downtime of not talking. Do you know what I mean? Like my—my talking synapses have just been doing that, and now they're like, "Oh gosh, we need a break." Um, so—so yeah, thank you for being here. I hope you enjoyed it. I'm gonna try and do another one in a couple of weeks. Um, if you want to brew up some questions, yeah, just going forwards, if you, um, drop a comment on literally any one of my videos, it pops up in a little stream on my app and I can screenshot it, and I can keep it for next time. So, if anything pops into your head at any point in the future, uh, just comment on any video and I'll find it. But yeah, thanks again—huge amounts—and uh, till next time.