220 - Deepak Ravindran: Recovery Is Not Either/Or: Bridging Biology and Neuroplasticity

I catch up with pain consultant Dr Deepak Ravindran on what four years of Long Covid clinic work and research has taught him about why people get stuck with fatigue, pain, brain fog and autonomic symptoms. We argue for a practical middle path that validates biological change while using neuroplasticity and whole-person support to help the system relearn safety and move forwards. 

• Deepak’s shift from pain medicine into leading a Berkshire Long Covid clinic and what patterns stood out over time 
• Why most Long Covid patients were not hospitalised and why symptoms can still be severe 
• The pressure on UK primary care and the case for better signposting to high-quality resources 
• Why “either biology or brain” is the wrong frame and how the neuro-immune system acts as one unit 
• What central sensitisation and predictive processing explain about persistent symptoms 
• Evidence and theories: cytokines, neuro-inflammation signals, auto-antibodies, viral reservoirs and micro-clotting 
• Treatment principles: combining medication trials with nervous system regulation and paced rehabilitation 
• The STIMULATE ICP study approach and why integrated care pathways can outperform single-drug hopes 
• Practical “waiting well” strategies: sleep, movement, breathing techniques, mindfulness and confidence-building 
• Why recovery is individual, slow, and built from consistency rather than quick fixes 

Links:

• Our previous episode: https://www.buzzsprout.com/1835170/episodes/11277564 
• Ami Banerjee episode (Stimulate ICP): https://www.buzzsprout.com/1835170/episodes/12209909 
• Berkshire Pain Clinic: https://theberkshireclinic.com/consultants/deepak-ravindran/
• Deepak's blog on Living Proof: https://www.livingproof.org.uk/post/book-review-pain-free-mindset
• Pain speak Podcast: https://deepakravindran.co.uk/podcast/

For more information about Long Covid Breathing courses & workshops, please check out LongCovidBreathing.com

(music credit - Brock Hewitt, Rule of Life)

Transcript

Welcome Back And What Changed

Jackie Baxter 0:00

Hello and welcome to this episode of the Long COVID podcast. I am delighted to be joined by Deepak Ravindran, who has been on the podcast before. And when I was going back through, I realized it was four years ago that we spoke. So we've got a lot to catch up on since then. But Deepak, thank you so much for coming back. And I'm really excited to hear about what you've been up to and what you've discovered in the past four years. So welcome back to the podcast.

Deepak Ravindran 0:32

Thank you, Jackie. Thank you for having me. And yeah, no, I can't believe as well. It's been four years since uh we last spoke, and I was on your podcast. So thanks for having me back on the Long Code Podcast again.

Jackie Baxter 0:44

Oh, thank you so much for being here. Um, so I mean, last time we talked a lot about pain, and you know, that was where you were kind of specializing at the time. Um, but before we kind of dive any deeper into wherever we're going today, do you want to say a little bit about yourself and what it is that you're kind of doing at the moment?

Deepak Ravindran 1:05

Yeah, absolutely. Thank you. So I'm a consultant in pain medicine, so that's my fundamental background and specialism. Uh, I have was a consultant uh at the Royal Barkshire NHS Foundation Trust. So I was a full-time NHS consultant from 2010 till 2024. And during that period of time, I had set up the community pain clinic uh in 2016. And then in 2020, when COVID broke out, uh, and then we started recognizing patients with long COVID coming through. The NHS in the England obviously asked for an establishment of long COVID clinics. And so, for my area, by that time in 2020, in the beginning of 2020, many patients with ME, with CFS, with fibromyalgia were also being referred to the pain clinics in the community and in the secondary care hospital where I was the clinical lead for these services. And when the opportunity or the ask came for who would set up the long COVID clinic for Berkshire in my area here, I sort of put my hand up to say, yes, I'd be prepared to set it up and lead the long COVID service as well. Because at that time I felt and I'd done a bit of research because I had COVID quite badly in the first uh wave of people getting it. You know, I think when we went into lockdown at the beginning of March, now that seems a really long time ago, but in the beginning or the end of March 2020, I was one of the first consultants and staff members in my hospital to get COVID. And I was out of action for almost two weeks, and it took me a really long time to recover, almost three, four weeks. I mean, in long COVID terms, not long, but in my view of what should be a viral infection, took about three, four weeks. And that was surprising to me. And I had already been reading by around April, May, I'd been reading about uh this about flu, the avian flu, and the other pandemics or epidemics that had occurred in 2015 or 2017 in Canada and Hong Kong. So I kind of felt that on an established long COVID clinic, there would be similarities to ME, to CFS, to Fibro. But at that time, we didn't know any different. We thought that there was going to be a major respiratory lung damage-related issue coming through. But over the three, four years that I set the clinic up from 2020 till I left the Royal Barks Hospital in 2024, and I was leading and sort of being the main consultant for the service, I realized that actually 80% of patients were people who are not hospital admitted with COVID. Indeed, most of the people with long COVID were being people who did not need admission to hospital or even ICU. And then, of course, we had about 10% of patients presenting with similar symptoms after the vaccine as well. So we had this really unusual set of symptoms coming through. So when I spoke to you on the podcast in 2022, 22, 23, so is it four years ago now? My thought was, well, yes, I'm seeing fatigue, which we recognize as a most important symptom, but I was seeing a lot of pain. And then, of course, we had a lot of other symptoms that were coming through. We've had this description that almost 200 symptoms were being noticed in almost 10 organ systems of this condition that we call long COVID. And by the time 2024 came, obviously the number of cases were going down. And I can talk about what's happened to long COVID clinics there. But I also had appreciated that we were seeing a wider spectrum of symptoms, a variety of presentations, a variety of things that were people keeping people with long COVID off from returning back to work or feeling normal. And the theories as well have evolved. So there's so much more understanding of what are the mechanisms that are resulting in the various systems being the way it is in long COVID. And all of that has helped me because when 2024 I moved out of the NHS in the secondary care service, so I stopped the long COVID service as well. I stepped out of that. But privately, I'm still seeing long COVID patients through my private clinic, the Baksha Pain Clinic. I do one day a week with the NHS in Hampshire and Isle of Wight right now. And I then work with the GP practices in my local area because I feel that if we can improve primary care and my GP colleagues' understanding of pain, of fibromyalgia, of CFS, of long COVID, of ways to manage these conditions in primary care at the GP where they first meet the GP, then we could potentially reduce the amount of waiting they have to do before they get good quality information. Can we raise the awareness and support for patients in primary care and do that? So that is my role right now, is a flexible role. Some of it involves with NHS, some of it in primary care, and then advising

From Pain Medicine To Long Covid Clinics

Deepak Ravindran 6:30

a few other community pain services across the UK. And then my private practice, which is both oncology for cancer pain and medical cannabis, and private non-cancer pain as well, with a lot of options, whether that's lifestyle medicine approaches, whether that's whole person approaches, whether that's interventions, I offer all of that through the work. So that is my kind of flexible way of working these days.

Jackie Baxter 6:58

Awesome. And um I mean, I love what you were just saying about you know the helping GPs, because I mean, you know, I I think in the world, all the all across the world, this is an issue. But you know, we hear about it a lot in the UK, the sheer amount of pressure on GPs. And yet they are the person that you have to go to in order to get anything else. And you know, you think, well, no wonder GPs are struggling. Um but uh you know, as a patient, you can also understand the frustration. You know, you have to wait a month in order to get a GP appointment, and then you get eight minutes of your GP and you go in with, you know, 200 symptoms that you want them to talk about. And, you know, it's an impossible situation from both sides.

Deepak Ravindran 7:48

And they probably tell you that we've got 10 minutes, so we can only focus on two symptoms or one symptom at a time.

Jackie Baxter 7:53

Absolutely. Um, so you know, I mean, GPs absolutely need support on many levels, I think. Um, but you know, education around things like long COVID, MECFS, all of these conditions that people label as invisible or difficult, um, you know, they they are difficult if you don't understand. And, you know, I think there's a huge part of, you know, empathy and being listened to, you know, that is medicine. But if you've only got eight minutes, then you know, it's very difficult to make a patient feel heard and cared about on top of then listening to their 200 symptoms. Um, so uh I think you're right, you know, there's a lot of stuff out there. You know, you and I are currently contributing to that amount of stuff that's out there. You know, there's a lot of podcasts, there's a lot of things like breath work, there's a lot there's so much stuff that can be accessed by patients. So it's almost like if the doctors could signpost some of that stuff right away, it doesn't mean that these patients are being dismissed. It just means that they would have something that they could get on with while they were then waiting for further tests or referrals or you know, whatever was appropriate. And even if it didn't solve all of their problems, it might start to take the edge off something. So it just it sounds, it sounds like something that we should be doing across the board, like across the entire country, across the entire world to me.

Deepak Ravindran 9:19

And I and I think that that thing has arrived there, Jackie, now. And you know, so I'm I'm a pain coach as well. And a lot of the time I work with the primary care, and I said GPs, but I don't exactly mean I mean primary care. So it means not just GPs, but as you rightly said, if we can make the nurses, the paramedics, the social prescribers, the health coaches that are now there in many GP practices, if we can make them aware how the science of pain and fatigue and long COVID has changed, what are the relevant things to make people aware of? What are the various resources to help them signpose their clients, their patients to, then that is a very important, as you said, necessary aspect to curate and signpose them to valid sources of information, not necessarily misinformation, which is also rampant at the same time. So I think it's about getting that message right, going and improving the set of available resources for all healthcare professionals in primary care. And I think that's where the work of really lived experienced uh people, so people like yourself who've then taken it their role to pay it forward. Other people in this space who are doing that kind of work, I think all of these voices need to be amplified, need to be made aware of. So it's a great time to actually be doing this, it's a necessary thing to be doing now. So I'm really enjoying this role in primary care because if there is a lot of healthcare professionals to get to, and the knowledge that if they then can pay it forward and improve the lives of eight or ten people around them, then that's a huge compounding effect that has to have some benefits down the line.

Jackie Baxter 11:12

Yeah, totally. And I mean, I think what I love so much about what you're saying as well is I kind of want to say the word holistic, which I know is a little bit of a buzzword for some people, but you know, the the sort of the importance of all different interventions and you know, in in order to have things like referrals and pharmaceutical um prescriptions and a lot of stuff like that, you know, you do have to go through your GP and possibly even be referred further onwards and you know, that whole process that can take an awfully long time. Um, you know, and and that is important and it is totally relevant for some people. Um, you know, I'm I'm not totally anti-pharmaceutical at all. I think there absolutely can be a role for uh for that. But I certain also have not heard any recovery story from a single person who found one drug that made them better. Um, so in in what I've seen, it's very much a bridge or a part of the bigger puzzle. And there's this whole other side, you've mentioned lifestyle medicine, nervous system, you know, there's all sorts of other stuff to use a really generic word.

Deepak Ravindran 12:29

Very scientifically important word, stuff.

Jackie Baxter 12:31

Stuff with a capital S, so that makes it extra scientific. Yeah, you know, and and all of these things have a role. So if there's something you can't access, then there are also other things that could be done.

Deepak Ravindran 12:47

Absolutely.

Jackie Baxter 12:48

And I'd sort of love to hear from you um, you know, as the person that is trying to educate doctors and sort of signpost people in the sort of the right directions, how you see things kind of all working together. Um, and also I suppose part of that is what do you see that's helping people, you know, with people who are seeing improvement? What is it that they're doing? Are there certain things or is it a combination of all of it?

Deepak Ravindran 13:22

Really good question there, and and uh I think the short answer is I've had the opportunity to be involved in two, three major drug or foundational research projects at the University of Reading, and then I was part of the group of research contributors for the ICP stimulate trial, which was led by Prof. Ami Banerjee from UCL. So I have been part of these two, three research trials. Obviously, I've got my clinical body of experience from the long COVID clinic, which I was part of for almost five years, uh, four to five years, and that uh experience, and of course, privately having seen long COVID patients with various mechanisms of injury to symptom persistence, the reality is that there's never been one magical drug

Why Primary Care Needs Better Signposting

Deepak Ravindran 14:20

or non-pharmacological treatment that's been transformative. I think if anything, I would say that where I've heard those stories of truly transformational recovery from long COVID happening, it's been when some form of neuroplasticity-enabling approach has been foundational. And then people have layered two, three other ways of retraining their nervous system or their breath work, and then adding in some treatments at the right time to help their recovery. So, those are the people where I've heard truly fantastic recoveries coming through, where they've been able to harness their neuroplasticity and change the way they have done things there. That that's one part. But I think the research in itself, so that's the short answer. That no, there's not going to be one answer right now. There's not going to be one thing. But if I have to dig a little deep, maybe what I can just start off with is just to say that um there's always this tension uh which I see where in, for example, just a week ago, I think in the magazine Wired magazine, there was an article where uh a journalist had actually said that well, there are these brain retraining approaches, but there's no research option for them. And that got a lot of people who were, let's, for practical purposes, let's put it there, who feel believed very much that COVID and long COVID have very strong biological damage problems ongoing. Therefore, how can somebody write an article about wanting more brain-based approaches? And it was interesting to me because I was seeing the comments to the article. I was part of various social media groups where this article was being discussed with equal ferocity on both sides of the argument. And to me, it was um less surprising uh because uh in one way I thought I sort of expected it, but in another way I kind of thought, why are we having this kind of dualistic approach to a problem? Because to me, the science is fairly robust, that the nervous and immune system function as one unit, and our brain and our central nervous system and our immune system, which is also there in and around the gut, everywhere in the body and also in the brain, are all equally impacted and changed. So there is a physiological change anyway that's happening to these systems, so nobody is denying the body-based damage slash microvascular changes that are happening. The question is, how do we move forward? And in moving forward, if one of the treatment options that's on the table is an option that's about harnessing neuroplasticity, asking people to focus on the physiological mechanisms of breath work or doing things that can alter the neural circuits for the positive side. Yes, a little bit of psychological techniques of reframing or journaling or uh creative writing or emotional uh solution therapy, some focus of emotions, understanding that emotions are also processed by the brain centers there, then I don't think of that as either or. I see value in actually combining both to see which makes a difference. And as I said before, when I've seen full recoveries, and it does happen in long COVID patients, it happens when people can merge both. They might use a little bit of the medications, but then if they can bring this neural and immunosafety measurement, then that's where the opportunity comes. So I feel there's value in bringing both together. So I certainly think that there is a way to talk about both. And in my clinical practice for long COVID patients, touch wood the when the patients come to see me, I am able to look at it medically and talk about the various treatments for calming down their mast cells, looking at the histamine release, looking at various uh treatments for uh pots, looking at various treatments for LDN, low dose nitrixon, testing for their autonomic dysfunction with some scoring systems, doing some DNA testing of the epigenetics, what genes might be modified so that their pain or their fatigue processing pathways are altered, what supplements could be tried for it to improve it. But I blend it with actually saying, okay, this is your nervous and immune system that has been physiologically affected. And so while I give all these drugs or supplements or trials to calm the system down pharmacologically to a certain extent, maybe 30-50%. How about we look at other non-pharmacological options as well that we can bring in? And it's always a question of marrying both and combining both in the way the patient feels coached and most comfortable doing. And that has made a difference. That is helpful, that makes them that they don't, it's not either or. And I think clinical practice, when I've spoken to a few other people who think like me, who work in this space, I find that they are doing the same kind of thing. They are not saying this one or the other, but they are testing for all the biological options, doing imaging where it's required, making sure we're not missing any inflammatory markers or testing. And then we ensure that we have a plan that has elements of both.

Jackie Baxter 20:32

Yeah, I I really like this approach because I I agree with you that you don't have to be one side or the other. And as as somebody who is not a doctor, um, but I I feel like there is this kind of over overview where I can sort of say, you know, as you're saying, there there is a role or there can be a role for drugs and supplements and treatments that are sort of more medical-based. And I certainly agree with you that, you know, getting things checked out, um, you know, getting your doctor to make sure that there aren't any underlying structural or, you know, anything like that is so important. I mean, it's partly important because you know, you need to make sure that there isn't anything there that there's a problem with. But there's also such a role there for the patient then to say, okay, now I don't have to worry about, do I have a clot, do I have this, do I have that? And that then has a huge impact on everything else. And um the example that uh that I've given before is um, you know, my long COVID was a I was in March 2020. So, you know, medical care, unless you were very, very, very, very severely affected, you know, was non existent at that point. You know, the system was just totally overwhelmed. And it was, I think, over a year before. I actually saw a doctor. And I was the sort of person that didn't like to ask for things because I was little old me. So I wasn't very good at advocating for myself in that

Beyond Either Or: Biology Meets Neuroplasticity

Jackie Baxter 22:10

regard either. So I had chest pain for three years before I finally went to the doctor and said, Look, I feel really silly, but I've got chest pain and I've had this for three years. And I'm really, really worried that there's something actually wrong. And to be fair to the doctor that I saw, he was brilliant. He said, Well, you know, I've taken your, you know, look looked at you and talked to you. And, you know, I think I don't think there's anything there. But for the sake of both of us, I'm going to run an ECG. And I thought, wow, this doctor's actually listened to me and he's not thought I was crazy. Um, you know, and and most people would say, Well, you've had chest pain for three years. Yes, you are crazy. Um, but um, you know, it was great. He ran the thing and everything came back clear, which was what we all expected. But then I knew and I was able to say, okay, well, I'm not quite sure what this chest pain is, but I do know that there's nothing structurally wrong that is causing it. And, you know, actually it reduced a huge amount just by doing that. Um, you know, because my system felt that reduction in in that sort of danger, I suppose. Um but you know, it's so important, you know, and it's also that being listened to, isn't it? You know, I went to that doctor and he listened to me, he was kind to me, he did what I asked him to do, in that he reassured me that everything was okay. But he didn't just tell me that it was fine, he showed me that it was fine. And, you know, I was then able to move on with with other things that I was doing. And, you know, so it's that being listened to, being kind to, not being dismissed. And there's so much medicine in just that.

Deepak Ravindran 23:52

Absolutely. And I think we should not ever when I do my talks around pain coaching, around talk about uh recovery, and I talk about with this with health coaches and social prescribers who I support now in primary care. That's such a big important part is when you can validate the patient's narrative, when you can, and you should, and I think there's huge value in this approach to understanding the brain and the nervous system, because that is how we understand. So, the whole, you know, in this pain world, we have this concept of the theory of how the brain makes decisions, and this is something that's now validated across neuroscience, across society, in multiple other, you go into any business circle or other places as well. This is how they explain. They say that okay, the brain is looking out for how to survive. The brain, as the CEO of the entire body, its entire decision is to say, how can I make decisions that are going to be economically efficient in terms of energy utilization? And how can I do that with the fact that I'll never know all the information, but I just need to take whatever information I can get. I need to make quick decisions on whether this is safe or not. And in the context of pain, it was thought that this kind of predictive processing meant that the brain and the nervous system kept building models of various safety and various situations, has it learned, and kept using these models and running these models again based on what information or input or signs or symptoms come from various parts of the body. And so it just plays off a few algorithms. And the more efficient it is, it means it doesn't have to do too much of work because the brain is an energy-intensive organ. If it has to spend lots of energy looking at every decision again and again, running through 20 different uh processes and parts of the brain to decide what to do, that's a too much energy consumption. And so it preferred to keep something right. So in the pain world, we had this thing that if the brain chooses to take the measure of overprotection and overprotectiveness, and say, I'm just going to put out the signal of pain because that way the organism and the person and the human is safe. At least they're not getting further damage, then that's a good adaptation when it is required, but it's an unnecessary adaptation when it is not required anymore. And that's where we think sometimes some people are left with persistent pain. In long COVID as well, the pain in long COVID was taught that it could one of these ways of explaining could do. But I think now we recognize that in conditions like long COVID, in conditions like chronic fatigue, we need to ask whether that same mechanism is still going on and playing out. Now, you might say that there is a low-grade inflammation happening because of all the things that we know we see in chronic fatigue. So maybe, for example, in long COVID and in chronic fatigue, uh, I was just writing this up there in terms of the theories there. So we know that there is a cytokine, which is a form of immune chemical, which is an inflammatory chemical. There are long-term changes in some of these chemicals. It lasts for almost 7 to 20 months, according to some studies. And so specifically, I've got written on so IL6, IL1 beta, and TNF alpha. So these are three very common inflammatory chemicals. And in the cancer space, we've got drugs for them. But we know that in conditions like long COVID and some chronic fatigue, these markers are elevated. In the research that I did within my University of Reading, where we actually took about 40 or 50 patients with long COVID, and we uh put them through. What did we do actually? Let me just see here. So we had, uh, just to be absolutely right there, it was just a cross-sectional study. We had 46 patients who had diagnosed with long COVID and they had new pain. And we took them through uh 20 people who had long COVID but no pain, and 26 people who had long COVID but lots of pain, and we put them through a series of questions looking at their entire sort of uh history, their vulnerabilities, their risk factors. But we also did a functional MRI imaging. We did an MRI scan which looked and saw what parts of the brain are inflamed, are having more oxygen activity, and we saw that actually there is some evidence of a rise of one of the inflammatory markers, and it showed that there is a significant elevation in one marker called myoinositals. Now, that's a marker that is elevated for a variety of reasons in various other conditions of inflammation, but also when threat is perceived by the immune system. When there is danger, either due to a viral particle, or when the immune system cells have memorized this particular threat system and are amplifying it and playing it out again, it is going to be released out there. So there is a physiological mechanism happening. We know that T cells, a kind of immune cells, lose their ability. There are some autoantibodies that are sometimes produced. So all these physiological changes are happening at the level of the immune system. Viruses can sometimes, viral particles can be like a reservoir. So that's another theory of long COVID that's happening. There's some platelets and micro clotting and all of these strategies that we know that there is some evidence to say that the blood vessels are impacted adversely, whether that's a small, tiny blood vessels going to the kidney or the stomach, or it is a tiny blood vessels in the brain in there. We know that there are changes in the capillaries or in the blood vessels. But all of these, I would argue, are ways of informing the brain and the nervous system that physiologically those are the triggers. So that the brain and the nervous system is saying, Yep, I can sense these are happening. So my decision is going to be instruct the muscles to go tight or put out antibodies or various things that are going to instruct fatigue. Or if these things are happening at the junction of the memory circuits, that would be brain fog. If it happens to the nervous system that controls your breathing, your heart rate, or your digestion, that's autonomic dysfunction or pots-like symptoms. So to me, that is feels like a scientifically plausible explanation of why you can have downstream impact. And you may have these tiny changes physiologically, but there's no reason why we can't still try to tell and teach the nervous system various ways of inducing safety, whether that's through breathwork, whether that's through touch, whether that's through knowledge, whether that's through retraining some circuits to be less reactive to these physiological changes. And I think that's the way to look at treatment of long COVID now is that there might be a group of patients where these triggers from these autoantibodies or reservoirs are not so much that we can get success in the circuits being retrained with or breath work or these making a difference. And there will be a group of patients where these triggers might be a lot more dominant, or the nervous system is not going to let go of that protective adaptation. And that might explain why some long COVID patients are recovering, recovering completely, and other long COVID patients are not recovering, and then we need a maintenance strategy. And for both these, I think that's what the research is saying. We still need more studies. Where's the funding going to come for this? That's another separate target to go for. But I think this is where I see the value, and maybe this is the time to mention to your audience as well is that I was part of the other research project that is going to be produced, and prof Ami Banerji is the chief investigator from UCL there. It was called the Stimulate ICP study. And there were two parts of the study. In one part, they were looking at integrated care pathways. What if we gave a comprehensive, person-centered, holistic pathway for improving the care of people with long COVID in the NHS? And there was a sub-part to the study wherein we gave patients a trial of four drugs: a blood thinner called riveroxaban, an anti-inflammatory drug that is used for gout called colchicine, and then a steroid, and then finally a uh something to block the histamine release. So a combination of uh Famotidin and Lauratidin. And reality was that when um we go we've got this approved, it's going to be published in the

What The Research Shows About Inflammation

Deepak Ravindran 33:40

next few weeks there. So I can't say too much in that, I can't go into the nitty-gritty of the research. But what I'd like to say is that what's emerging from the research and those papers as well, is that not one drug is shown to be super awesome or super helpful. It is shown that fatigue definitely improves. But when you bring in the integrated approaches, when you support the patient whole, when you layer in drug and non-drug techniques together, that's where the best advantage comes through.

Jackie Baxter 34:14

That is fascinating. And um, I had Amy Banerjee on here. Oh, it must be must be almost as many years ago, I think, that than than when we last spoke. Um so I'll make sure to link that episode because I think he talked a lot about what the study was going to look like. And I'm really excited to see what has now come out of the other end of that study. Um that's going to be really exciting to read. And uh and we will have to talk about it when it does. Um, but um, yeah, I I think that's fascinating what you're saying. That you know, either or doesn't seem to work, but the combination of both is where you get those biggest impacts or um or possibly quicker impacts as well. Because uh certainly I remember people, you know, when as I said, I was uh a March 2020, so I didn't really have access to anything. But um then later on I started hearing about people who were able to access things like beta blockers, which was able to bring their heart rate down. And I remember thinking, well, that would have been really helpful. I had to, well, I mean, partly suffer through a lot of time of absolute terror as my heart rate was, you know, through the roof.

Speaker 1 35:29

Yeah.

Jackie Baxter 35:29

But also I then had to learn to bring it down naturally. I had to do it completely naturally, which worked, but it took a lot longer. So I was thinking, well, actually, you know, if I had had access to something like beta blockers, for example, then it might have helped me to make better progress quicker. So it didn't stop me from getting where I was going eventually, but it might have sped up the process. And it might not have done. But you know, that's just such a you know a basic example of how two things can work together. So with, you know, more knowledge, more different treatments, more different drugs, more guidance from someone who actually knows what they're talking about, rather than me just DIYing it myself, you know, you could start to see how you could get a much greater impact um with this kind of combined holistic approach or whatever word you want to put on it, um, where it just brings in sort of different different threads and different ways of of being able to help people. And um, one of the things that really blew my mind um when I was starting to learn about the nervous system and speak to people who were either either side of the uh of the argument or people who were working in a slightly more integrative way, was the idea of the nervous system actually supporting everything else. So even if you are using a pharmaceutical route, the more regulated your nervous system is, the better results you're going to have with pharmaceuticals, because the better the body is going to be able to handle it, or you know, the effects are going to be better. And I remember thinking, wow, so really, really, it is both. And that is exactly what you've just been saying is that the best results come from things being integrated.

Deepak Ravindran 37:22

Absolutely, absolutely. And you know, let's let's put this this way. I think I I would probably take this opportunity or this point here is if we have to say about what's happening in the UK with regards to long COVID clinics, or maybe for that matter, what are the new drugs that my colleagues are thinking of right now? Uh, and I sort of a shout out to my colleague in in the Royal Box as well. She's been putting through patients and getting some really improved stories with vitamin B12. So now, B12, when given as an infusion in some patients, it's still after two, three years of having long COVID symptoms when they have tried a variety of things, there's still value in constant because B12 given to the patient changes the intensity and the quality of the symptoms. So I think there's still a role. And then there's another one called low dose naltrixon, which is again something that people are talking about, and the research is growing on there. So I certainly feel that these are treatment options that we shouldn't be giving up entirely on these options. I think the research funding needs to come for looking at these newer molecules or older molecules that are repurposed for this use. That that is there. But if we keep that by the side and then we approach and say, what else is happening to the nervous system, then we recognize that I think it's not just the nervous system, I think it's the neuroimmune system. It's it's together, they are sort of inseparable. I don't think it's easy to say it's one or the other, but I think at every nerve transmission point between each nerve cell and the next nerve cell, so at every synapse, the junction, what we realize and want to say is that there is an immune cell discussing, talking, monitoring the flow of traffic and information in these nerve cells. So each of our actions, our memories, our thoughts, our decisions, our behaviors are a consequence of a neuroimmune process physiologically. And that means that the resultant behavior is a neuroimmune trigger of a certain chemical, whether that's dopamine, whether that's adrenaline, whether it's cortisol, so whether it's a hormone or a chemical is released as a result of a neuroimmune decision. That means every action of ours at a physiological level is driven by the interaction of our nervous, of our immune and our endocrine system, the three of them working together. And a combination of how we try to address and calm these three is going to be how recovery occurs or we move towards improvement. And that's the beauty of it and the complexity of it is that you know, we were discussing before this podcast started, is each one of us is beautifully and differently unique. And each of our three systems, how it is going to respond to a given stimulus or treatment or type of approach is going to vary. And that would explain why no two stories of recovery or suffering are similar.

Jackie Baxter 40:49

Yeah. And it it makes so much sense, doesn't it, when we do think about how different we are. And, you know, I think whether it's a drug or a supplement or a breathing exercise or anything else that someone is trying, you know, it's it's getting the dose right is so important because we are so different. And, you know, that's why you hear people talking about, you know, increasing dosages of LDN, for example, you know, at very, very slow increments. And, you know, in the work that I do, you know, I see people responding to breathing exercises very differently. And it's so important to go at a pace that is appropriate for that person as an individual. So, you know, it's it's it isn't my role to say do this thing, that amount at this time. It's to really explore that. And I and I think, you know, it sounds like from what you're talking about that that this needs to happen in in all spaces, that the patient really needs to be involved on that as well. Um, you know, and and be part of the process, I think, because I think, you know, patients often feel very disempowered, don't they? Um, and you know, there's there's something about being at the doctor as well. You know, you're the patient and the doctor is the doctor, and the doctor has the answers. And actually the doctor doesn't always have all the answers. Um, and I think, you know, it's it's that kind of collaborative process that I think is really important, certainly in a condition like this, where you are the patient, you are part of the process, and you're working with your doctor, you're working with your specialist, you're working with your breath coach or your nervous system coach or your therapist or whoever it is that you've got in your team, and that you are part of that process, because that gives us that kind of more empowered feeling, doesn't it? We are we are important and we are part of it. We're not just sitting here having things happen to us.

Deepak Ravindran 43:02

Absolutely, absolutely, so well said, well said, really.

Jackie Baxter 43:06

And I guess that makes the patient feel well, yeah, more empowered, but less um what's the word I'm going for? You know, just kind of forgotten almost as well. Because I think,

Stimulate ICP Trial And Repurposed Drugs

Jackie Baxter 43:20

you know, as well, this this can happen again. We talked earlier, didn't we, about the the pressure on GPs on those kind of primary contacts. And um, you know, often you kind of you go to the doctor and then you know you've waited a month to see them in the first place, and then you know, you wait another month to see them, and then you wait six months to see the consultant for whatever it is you've been referred to. And like, what are you supposed to do in between? Are you supposed to just sit and wait for something to happen to you? You know, whereas if you're part of that process, you know, you're you're able to say, okay, well, well, great, I'm happy to wait for that referral, but what can I be doing in the meantime? Can you signpost? Me some stuff, um, or maybe the doctor will come out and say, Can I signpost you some stuff? And then you know you're you're part of that process in a way that that you're that you maybe didn't feel before, I think.

Deepak Ravindran 44:14

Absolutely, absolutely. And I think that is what crucially some of the other research, like in in my hospital sort of pain managing program, people often were put on this pain management program, which itself was a physiotherapy and psychology-led sort of approach. But the waiting time for that program, because of the resources around 12 or 14 or 18 months in different parts of the country. And we thought of this concept of waiting well. You know, how can you wait well? What can you do to do make yourself most ready for when the program starts? That same concept is also used, for example, now we know waiting times for surgery for a lot of surgeries is also six to nine to ten months, depending on which part of the country you're in. And there's the same concept of waiting well. What can you do well while you're waiting for your surgery to happen? And that might not be about another drug, but it's about saying, well, what can you do to get your system ready? And if we think of surgery or something like that, like a half marathon race or a marathon race, you're never just going to pitch up for a surgery with no preparation at all. You're just not going to sit in one corner, rock your boat, and then just eat and eat all dodgy food and just wait and be worried and be anxious and then turn up on the morning of surgery and hoping that it'll go all right. If you think of it as a marathon, then if surgery is the day of running the marathon, then you certainly are going to spend at least two to three months prior preparing and training your muscles and training your body and training the entire person to be able to finish the marathon safely and completely. And that's the same principle we're saying is how can we help you wait well? What can we do to improve your nervous system functioning, your immune system functioning, your muscle conditioning? What can we do in terms of movement, in terms of sleep, in terms of nutrition, in terms of mind-body techniques? What can you do as a flexible combination to manage it? And so even in long COVID or CFS, that's what most of the programs now are teaching is all these things there. So it doesn't say you can't get a particular drug or treatment. Yes, unfortunately, a lot of long COVID clinics in the country now have either been changed or even shut. But effectively, all of the clinics' patients are being re-inforced or reintegrated into other CFS services or fibromyalgia services so that we recognize that let us at least give this core of how do you optimize your sleep? How do you improve your breathing techniques? How do you improve your movement strategies? How can we feel or get you to feel more empowered or have the confidence to do some uh meditation or mindfulness or those kinds of approaches? Nobody's saying that this cures the problem, but this is about saying how can we give safety to the nervous and immune system? And maybe over time, as all these medical conditions, the biomedical molecules, the physiological changes, either they settle or they gradually reduce. Maybe these techniques will have a better impact and make a bigger difference. And I think that's what all the clinics now are doing, even if they are not long COVID clinics anymore. I think we spoke before the podcast that hardly anyone is making a diagnosis these days. Um, still people are struggling, they are getting diagnosed, but the diagnose often CFS because nobody has a COVID test anymore. And if they're left with fatigue or brain fog or all of these symptoms after an infection, and if it's not COVID tested, then the alternative diagnosis is CFS, where it is given. Otherwise, people just struggle. They struggle for answers, struggle for solutions, they look on AI, they look on the internet, and they try various home remedies or therapies. And this is where I think activities like yours, clinics like the various other Leap Peer Expert Clinics, uh, patient groups like this, Living Proof or Curable, all of these, you know, the I think there are some recovery groups as well. You've got one, there are some other websites as well, which have collated all these stories. I think this is where knowledge of this, signposting to this, making them aware is going to make a huge difference.

Jackie Baxter 48:45

Yeah, I love that. Yes, it's getting the right information to the right people, isn't it? And then, you know, the the right support as well. But if that support is kind of, you know, waiting, then as you said, I love this concept of waiting well. We're not very good at waiting patiently, are we? I think for a lot of things. Um, but um waiting, waiting well, I like that. I'm gonna keep that one.

Deepak Ravindran 49:10

Important. And if you just check it out, there's so much good research, there's no reason why we can't extrapolate that logic, or we should be taking that same logic here for people who are struggling with symptoms but don't know where to turn and don't know. So it's so we are not presenting this as the cure, but I think this is the necessary backbone. The foundational layer of recovery is this, and then you can layer on the various other biomedical, biochemical, pharmacological options as and when required.

Jackie Baxter 49:42

Yeah, and and we so started off this conversation, didn't we? Kind of saying, you know, that the recovery tends to be a jigsaw puzzle of lots of different things. So it's not just one drug,

Waiting Well And Building A Recovery Backbone

Jackie Baxter 49:55

it's not just one breathing exercise, it's not just one nervous system technique or one diet. You know, it's it's the right combination of all of those things, is what's going to help someone to get well. And it's finding what that combination is and getting the right support that you need and uh and bringing that all together.

Deepak Ravindran 50:18

You use that word as well, and and I think that's the bridge. That is what we need. You know, we've got this thing of central sensitization where the nervous immune system and the endocrine system of our body, the central uh network, as it were, of our body is sensitized. So central sensitization, and then you've got the cells of the immune system, the glial cells we talk about, where the alarm is sort of kept on high alert. And I think the reason that these mind-body approaches, for lack of a better word, uh, and the biomedical findings fit together. This is where I think you and I see the energy synergy, and I approach it from a from a medical perspective, is that these immune molecules and these brain wires are one unit and they talk to each other constantly. So some of the research papers, and I can give you your audience the links to these papers that came out. You know, there's one very good paper that slightly took a very biomedical view of it, but it synthesized the evidence beautifully and it was published in the magazine Nature, not a magazine, in the journal Nature in April of this year, so just a couple of months ago. And then there have been a couple of very important systematic reviews of long COVID from the middle or end of last year, including some work from the Bateman Center in early this year, which compressed everything. And then we've got the mind-body approaches. And I think what we know is that when you have systemic inflammation, those interleukins and cytokines are mentioned, when they leak across the blood-brain barrier, when they hit the nervous system, they will activate the immune cells, the microglia. And these resident immune cells will, at the biochemical side, they will turn on the nervous system signaling. That is central sensitization. But the way to look at it from the neuroplastic or the neuroplasticity side is that because the brain is already in this sort of state of chemical threat, it begins to interpret any incoming data as just the same version of that threat. And that means that various other parts of the body will also be amplified, and that can present as pain or debilitating fatigue or surges of adrenaline that would feel like the pots-like situation. And I think that's where these treatments are all working. So, whether if you take things like curable, some of the recovery stories on there, or something like FreeMe, they don't dissolve the blood clot, or they don't change the immune signaling or the viral reservoirs. They are just using the top-down mechanism, the safety signaling to down-regulate the over-reactive, over-protective, sensitized alarm system due to the immune cells. And I think that's what we I see as the bridge that is connecting both. And I think that's what we need to get across to the community, to the patients, especially, that there's value in doing these things while waiting or starting alongside any other medical treatment. And I think if they can do this consistently, keep to the process, you know, work with you for a few months, work with the process for three to six months. We know that that's the time it takes for the system to calm down, for new nerve cells to form, for new circuits to wire. And that's where the opportunity for true recovery and improvement can happen. So none of this invalidates the damage they might had, but we don't have to be defined by the damage. It's about how we move forward from here, combining the best of what science is giving us with the best of what we are learning from other recovery stories.

Jackie Baxter 54:25

Yeah, I love that. So it's not either or, but it's also not a super quick fix. Um, it does, it can take time, which is again what we're hearing from, as you say, recovery stories, that it's not just one thing, but also it does take time and consistency in order to get there. So yeah. Thank you so much. I feel like I have learned a lot. I feel like we've agreed on quite a lot of things, but also I feel like you've just kind of blown my mind by expanding um on all of that. So thank you so much. Um it's been so great to see you again. So exciting to hear what you've been up to. And if you're willing to come back and talk about the research paper in more detail when it's released, then I would absolutely love to do that again. We don't need to leave it another four years.

Deepak Ravindran 55:13

Happy to. I think in a couple of months that should be out there. And and I think I'll have a little bit more detail about our own research paper, and and you know, we can we can delve a little deeper into that part. But thank you so much, Jackie, for having me. Wish you all the best as well with the work that you're doing. Thank you for the work that you're doing with with all the people across the world, really. So, yeah, keep up the work there and and thank you for having me.

Jackie Baxter 55:39

It's been my pleasure.