#30 Navigating medical appointments with Dr Alba Azola

(soft music) I still see patients daily that come from going to dozens of doctors who have told them that there's nothing to do. And I wanna change that narrative. There are things that we can do to help this patients. Do we understand fully the path of biology and the biological underpinnings of this disease? No, but do we understand more than just saying we don't have any treatment for it? Yes. (laughs) Yes, absolutely 100%. (soft music) Welcome to Make Visible, the podcast Shining a Light on Complex Chronic Illness. I am your host, Emily Kate Stevens. (soft music) Welcome back to All You Lovely listeners. And before we start, I would just like to ask something that various listeners have asked me to do. Please, please, please, could you share this podcast with anyone that might find it helpful? Just encourage people to share it, follow it, comment on it. As there is a lot of information in here that is so relevant to multiple people. So please go forth and share what we're doing here. Welcome, Jess. How are you doing? I am currently on day nine of my fourth fast and I'm feeling sleep deprived, starving, and a bit confused. But hopefully, hopefully I can make some sense over the distribution of this podcast. What I hope our listeners have realized over the past several episodes is that you often come here saying that you are feeling somewhat depleted and you always pull it out of the bag, Jess. Yeah, I don't know quite how I manage it. I usually have to go and lie down afterwards. So hopefully I'll be on the other side. I'm gonna start today by sharing a story and I think it might resonate with quite a lot of people who have complex chronic illness. So in November, my daughter got sick with a virus, unknown virus, she had a bit of a bad tummy, didn't really think anything of it. She wasn't really getting well, but started to feel all right a month later. She got hit by another virus. And since then, so since December, she has not got well. So we are approaching four and a half, five months of her being unwell. And we have seen three different GPs. We have now managed to get her to see a pediatrician. We have had blood tests and we have had a 10 minute stand test. And there are various things that I can see in there. And what we've been told so far by the medical profession is I think it'll resolve itself. And there is nothing that we have been offered in terms of treatment. She was given some anti-naudial drugs to start with. There's nothing that is being done to address the deficiencies in some of her blood tests. And the four different doctors that we have seen have all said to my 12 year old daughter, are you anxious? Is there something going on that's making you anxious? And she said to me, "Mommy, I don't understand. I don't think I'm anxious." But all of these doctors asking me if I'm anxious is really making me overthink whether there is something going on with me that I should be anxious about. And I wanted to put that at the top of this episode because we are going to talk about navigating medical systems as a whole, not a specific medical system, navigating appointments and how we can advocate for ourselves or for the people that we love in terms of actually getting some help. Because it's not true that there is nothing to do and it's not true that these things will just resolve themselves. Jess, what do you think of my story? - Really sad, really sad, really frustrating. It makes me go, "Grr." - Yeah. - The thing is as hard as it is for adults, it's even harder for children because so many doctors just go, "It's a pediatric thing. I don't do that." Or there might be a drug that might consider doing off-label for an adult, but they're not going to do it for a child. - So you need to have a really punchy pediatrician who's prepared to go off-label and do all sorts of things and they are a very, very, rare breed, if not unicorns. I feel few and I feel few adults, I'm really sorry to hear that. - But what I found was interesting was that me with six years experience of navigating my own illness, I am still hitting against the same walls that every other person who is going through these medical systems is experiencing. I have not heard of one person say that they've had immediately someone who has been able to help them. But I know that there are things that we can do and I know that there are people out there who are trying to change these systems and trying to help the medical systems at large to be able to help the patients. Now I think the majority of people don't necessarily get referred to long-covid clinics or centers and very much of it is handled now by your primary care provider. - It's correct. - But there are some people who are out there helping and trying to change the landscape. This is a conversation that I had with Albra Zola. She heads up the MECFS and related disorders program at Johns Hopkins University and she's a rehabilitation physician and I hope that this gives you some hope. (upbeat music) - Patients that I knew from the hospital that were nurses, all the sudden had come in initially walking and the one they returned three months after doing physical therapy to see me. They would be having difficulty walking the whole way, requiring wheelchairs and that was something that really struck me as a clinician and it really made me want to do better by them. Physical therapy as is outlined by the typical protocols of autonomic dysfunction rehabilitation was not working. I knew that it wasn't just pots, so what it was, I wasn't sure. We don't get taught about CFS in medical school, you know chronic fatigue syndrome. It's as I understood it at the time, just whiny white women and I have no problem saying that and even the pot's patients, that was my perception of it. But this was different, this were people that I knew. And I think that that was part of the paradigm shift that happened in me as a clinician. This is something going on here. This people are not crazy. - And these were hard-working nurses that had been working in your clinics that you suddenly saw who you said or may sound able to walk at times. - Or their partners were having to wash their hair. They couldn't look after their kids, and I have small children too. So I feel like it was all of that that really kind of shifted my way of seeing this complex chronic illnesses and radically kind of changed my perspective. I also was lucky enough to be at Hopkins and to be able to reach out to different specialists, trying to figure out how I can help them. And they were very happy to help me because they didn't want me to refer the patients and fill up their clinics. So we quickly were able to learn from cardiology, what is the work of that's needed in order to rule out something that's structural or anatomic issue or rhythm issue with the heart. What are things that we need to do from the immunology allergy aspect? And then I found Dr. Roe, Peter Roe, who had decades of research and clinical care for this patient, and he was very willing to, you know, very kind and very given with his time in order for me to learn the interventions that have worked for him, how to assess the patients, what questions to ask to really be able to tease out this patient population, and what were the issues that were driving their fatigue and driving some of their symptoms. And that we could help them with. So yeah, so that's how I started to learn more about it. At the same time, we had a group of long COVID clinics that were put together by the Academy of Physical Medicine and Rehabilitation in their multidisciplinary past collaborative, now long COVID collaborative. And it was very exciting kind of early in the pandemic, having people from all over the country that were seeing the same things that were encountering the same problems and kind of discuss with them what things were working, what things weren't. - So in the network that was actually, you were then actually able to share information and treatment strategies. - Yeah, and we quickly kind of pivoted to forming writing groups that helped put together manuscripts that were intended for the people in the trenches, you know, those clinicians seeing these patients on what work up to do, how to evaluate, how to treat more efficiently. - And that actually, there's a whole host of things that we need to go through to get to this point that I'm going to mention right now, but that actually ended up leading you to being part of the recover TLC workshop, last September, when you were part of a panel discussion bound. navigating the pathway forwards and how to use information from observational and pathobiology studies to inform clinical trials. So everything that you've done in terms of collaborating with these other clinicians has enabled you to then be an integral part of trying to find this overall pathway and what we need to do to shape the future and moving forwards. That sounds really grand, but I was just trying to help people and just happened to learn by kind of studying them. But yeah, yeah, I mean, I think it's key because this were understudied illnesses and poorly understood and psychologized. And I think that there was not that many people that had the knowledge and the clinical expertise and observations that are needed to really inform research and inform how to phenotype this patient population and what are those debilitating symptoms and what is the root cause of them. I mean, it's just very complex, but there wasn't enough people with this type of contact with patients. Now we're ready to work. Because what you have the ability and you said thankfully you're at Johns Hopkins, what you have the ability to do is bridge this gap between being a researcher and a citizen professor. You have this kind of academic angle and the ability to actually be in the clinic with patients. And it's that combination really that has enabled us to get to a point where now you're having to help with moving people out of long-covid clinics and back into their primary care provider and create some kind of structural framework. And you've been part of that review as well, haven't you, that is putting a structure into place to provide clinical care providers. That's the ultimate goal, yeah, with the ability to treat people. Right, because we don't learn about this in medical school and medical training and internal medicine training or really truly not much at all. So incorporating training and education to the clinicians that are encountering this patient is it's key because there's so many millions of people out there that the specialty clinics are not going to be able to provide the care. A lot of the patients, I would say the majority of them are left to their own devices, you know, in order for them to manage their chronic illness because that knowledge is it's not disseminated as needed to meet the need. And it's also incredibly difficult when you have a chronic illness to actually have to navigate finding your way to a specialist clinic somewhere far away. A lot of people all that is open to them is their local primary care provider. So we do need to have some way to disseminate what is needed to that frontline. Yeah, yeah, absolutely. And there's many barriers to achieving that. But, you know, one foot in front of the other, trying to get there. But definitely the history and the historical context of the medical establishment and their perception of this illnesses is a big barrier to huge barrier. Tell me a little bit about creating this compendium statement with a lot of other highly regarded people in this space to give that guidance to the primary care providers. Tell me about that piece of work. Yeah, this was a really great experience, collaborative experience in order for us to meet the need, right? And we could sit there and talk for hours and hours about things that needed to be done for the patient or this or that. But it was really truly making it accessible. That was one of the most difficult things. Like, you know, we wanted to make literally a table that people could just in a few pages, just at least see what tests they need to order, what type of evaluation they need to do in the clinic and like really distilling down to what is the absolute necessity and what we can get of PCP that doesn't have time that it's overloaded with task and seeing patients for 15 minutes. Well, what can they do? And you break it down actually to the point of if this is what's happening, these are the potential treatments for this patient. Correct. Which is the key, isn't it? Because these people are being told there's nothing that we can do for treating your illness as a whole, as one thing. But as was said in my conversation with Dr. Roe, there are so many things that you can do to treat the individual components of these conditions. Correct. And that's what you break down in that guy's. Yeah, it's really being able to make this collective knowledge that has been gathered by clinicians that it's been doing this work in silos and trying to make it accessible and help the physician keeping in mind that they don't have time to do a lot of reading. But really providing them with the information that they need so the patients can have access to interventions that can quite significantly change their level of function that can impact their ability to re-incorporate to their task and their jobs and all of those roles that they serve in society. So yeah, I think that that was the most difficult part. We all had a lot to say, but putting it together in a way that's concise and distilled and that really bridges that access to the interventions and evaluations that are going to make a meaningful change. Has that guide now been disseminated? Has that now been shared with people or at what point is that? Yeah, that's been published. I mean, it's a public access so people can actually download them easily. I think that in medicine, the dissemination of information takes decades. Yeah. Unfortunately, so has it been disseminated enough? No, I mean, I still see patients daily that come from going to dozens of doctors who have told them that there's nothing to do. And I want to change that narrative. It's not that there's nothing to do. There are things that we can do to help these patients. Do we understand fully the pathobiology and the underpinnings biological underpinnings of this disease? No. So there's a lot of mechanistic work that needs to be done in order for us to get to the point where we can treat the very root of it. But do we understand more than just saying we don't have any treatment for it? Yes. Yes, absolutely 100%. It is a critical need, especially with this exponential growth of this population after SARS-CoV-2 pandemic. Yeah. I think physical medicine or rehabilitation is especially well positioned to be the clinicians that adopt this chronic illness community that nobody wants to claim. And I think that our ability to work in teams, our ability to incorporate not only the understanding the neurologic aspect or the medicine aspect of the disorder, but also understanding what it means to have function and independence and focus on the patient's needs to achieve that with the base knowledge of understanding what is causing the impairment. And I think you mentioned earlier this idea that you previously, not you, but the system has been operating in silos and that brings in that same thing, doesn't it, that you can't look at the neurological separate from the physical, you're dealing with everything together and actually trying to do a much more multi-system holistic approach to these patients because their entire systems are implying to it. Yeah, I think medicine has over the past few decades kind of shifted into this sub-specialized world, which in many aspects is great because it's allowed for advancements of medicine that we're not thought of 100 years ago. However, it has also come at the cost of the patient with a complex chronic illness because this patient typically end up needing sub-specialized care by multiple doctors, which in theory would have to be familiarized with this type of presentation, doesn't happen. So you have this patient that has limited energy, limited ability to really visit all of this specialist, it comes at a huge cost, right, to the patient and to their health overall. So in reality, in my opinion, the best way to serve this population would be to have a quarter-buck on their side that understands the initial assessment and initial interventions that address different parts or pieces of their comorbid condition. conditions and understands when it's needed to be referred out to a subspecialist and which ones can hold back or what the timing is, keeping in contact, you know, the fluctuations of the severity of their symptoms, which is part of the disease at this point. So it's not that there is nothing we can do. Jess, let us talk about the compendium statement that she spoke about there. Let's talk about other resources for clinicians and resources that we can use. As someone who tried to get a handle on this to help other people three and a half years ago when you published the Long COVID Handbook, let's talk through what resources there are and what we can offer to help people navigate this. Where should we start? Okay, so I think you can break stuff into two sort of subjects, one of which is the resources like the compendium that Dr. Azola has put together with her team and the people she's been working with. And there are now several different similar resources that are places for primary care doctors or specialist doctors to go to to find out in a quick, relatively concise, curated amount of information. This is what you should look for. These are the tests you should do and these are the drugs you might consider doing. Now, we've got three good resources like that in the States and we've kind of got two or three in the UK. There is a big difference between those US and UK resources, the UK ones, for example, the nice CKS on MCFS, which was updated in May 2025. We've got a nice Long COVID rapid guideline updated in January 2024. Now neither of those say much beyond kind of take it easy and they'll advocate for some excluding tests that you ought to have to make sure you don't have other issues that could also be creating similar symptoms, which is an important thing to do. Those aren't going to give British doctors a handle on thinking I could throw something off label at this to successfully go after some of these symptoms that the patient is experiencing that's severely damaging their quality of life. The thing that I noticed from the Royal College of GPs guidance on this, which is actually slightly older, was that it was basically saying, "Guide your patients to self-management tools and to our resources." It was very much about self-management. Is that what you. Broadly speaking. We've also got the DHSC MCFS delivery plan, which is where the government has committed £845,000 to research funding and committing to GP training. That's going to take a little while to come through. One thing on this subject, something that Dr. Zola said that stuck with me when she was talking about creating these compendiums and what it takes for me to acknowledge together is that it takes decades for this knowledge to be disseminated amongst the medical community. This is why one of the things that I say in the Long COVID handbook is really important. It's exactly what you've done with your daughter. If you see a doctor who doesn't seem reactive, doesn't seem willing to learn, doesn't seem willing to listen, doesn't seem curious, get another one. Just keep finding new ones because whilst that knowledge is being disseminated for decades, basically what you've got to try and do is just get to one of the few people who it has disseminated to, or at the very least, is curious about what this new landscape might be and is prepared to look at things you might send them, such as these three US compendiums. We have what's called, I believe, the one that Dr. Zola was involved in is called the PM and R compendium, we'll be in the show notes. We've also got the Bateman Horn Centre, which is put together an excellent clinical care guide as of May 2025. Then there's a PNAS patient survey by Eki et al. I've also been in the show notes. Basically, if you just want to get straight to the chase, it's like, okay, what drugs have we got and what can they treat? That exists in the PM and R1, the Bateman Horn one talks about this at some length. So I just run through some of the stuff it's talking about here. Yeah, yeah, do. Okay. What is great about these is that they are almost flowcharts of, this is the symptom, what can we do about it? And this is what the Bateman Horn clinical care guide does brilliantly. Yeah. So if we zoom back to October 22 when the Long Covid Handbook was published, in there I was talking about, these are the sorts of things that you might get your dots to prescribe for you if you're lucky. And on that list was things like beta blockers to handle pots. I've Vabradeen and anti-histamines as the main drug toolkit. And that was pretty much all you might be able to weed out of your GP at the time. Now let's say that you send this Bateman Horn documents to your GP. You might have more luck in the States, perhaps than you would in the UK, given that they might take it that guideline more seriously. Over here, they might go, oh, we can't possibly do that in the UK. They're different in the States. I don't know. Let me run through some of the parts of the conditions, some of the, some of the things that are on the table now potentially as off label treatments. So for Disorse, Nomeo and Orthostatic Intolerance, IE pots, we've got the beta blockers for panel all, a panel all metapolol, which are recommended for, this is a new one for neuroinflammation and post-exertial malaise or post-exertial neuroimmune exhaustion as. Todd Devon, talk about it. Exactly. So we're now actually putting LDN down on paper and saying, you can baby should try this and there are trials up and running for it. Multiple trials, yeah. Yes. And certainly anecdotally, it seems that about half of the people who try it say they improve from it and some of those people improve a lot with it and find it dramatically changes their quality of life. So if you're in one of the lucky half of that and that lucky half might be genetic, so you won't know until you try potentially worth trying to talk to your doctor about. The other thing that is in the basement horn is beyond the standard H1 and H2 blockers, which are anti-histamines. Also mastell stabilizers like Chroma Linsodium, Ketita fan, a GABA pen tin or Craig of Ballin for neuropathic pain affecting sleep. So we've got a few more tools in the talk at there for MCAS, which may potentially help. And then we've also got a talk of GABA pen tin oids as well as Mestinon, which is, I don't quite know if it's a cancer. And there we go, thank you. Actually, Alba Rosola is part of a trial for that, but it's also being tried by David Sistromis. There are various places that are trialing it for long COVID. What do you know about it? Well, you'll have to forgive me. I did have to look it up. I didn't instinctively know everything about it, but it is. And it's a, a C-tile colina stirrer's inhibitor. And that might not make a lot of sense to you. But essentially, we have a problem where a C-tile coline builds up nerve muscle junctions in the autonomic nervous system. And this may be responsible for some of the dysautonomic symptoms we experienced. The droop was originally developed for myasthenia gravis, which is a neuromuscular disease. It's been used for decades in that context, so it has a long safety record. Where it's potentially relevant for long COVID in MCFS is that it nudges the nervous system in the right direction back towards parasympathetic, which obviously is something we're trying to do through all sorts of holistic ways, but there may be other ways to achieve this too. It reduces heart rate on rest and on standing, which helps with the tachycardia component of pots. And it improves what's called neurovascular coupling, which is the mechanism by which blood flow is matched to demands, which seems to be impaired in long COVID, with certainly got issues around oxygen transfer. So the other big question with a lot of these drugs is what are the side effects like? Speaking not awful, a tense BGI related, so nausea, cramping, increased gut motility, things like that. It's this balance because a lot of the things, particularly for autonomic dysfunction, you are trying to prevent some of the dizziness and the nausea and the heart palpitations and the elevated heart rate and some of the side effects of these drugs are some of those symptoms as well. So all of this has to be done in such close conjunction and with such close monitoring with your primary care provider. Alvarazola also, she talks about using mid-adrened periodicity, means she talks about the fabric, she talks about methylphenidate and medaphonyl. Now these also help with autonomic dysfunction, but many of them are amazingly helpful for insomnia, which as we've spoken to various people about before is another big thing, and perhaps you are getting onto this in the Batre and Horn document, it's another big thing that has to be handled if people are to heal. Yeah, I completely agree, we've spoken about sleep before, obviously, absolutely critical. Just one final thing we're messing on, not a magic bullet, nothing is yet. In other documents I mentioned, the PNAS patient survey, it came back with a 41% net improvement score. Not amazing, we're not talking 99%, we're, hey, I'm cured, some people seem to do better, which seems to be the case with a lot of these drugs we talk about, and you have to weigh that up with how big a pill cabinet do you want to have, what kinds of side effects do you want to have to be dealing with. So with all these things, it's your mileage may vary. Yeah, there was another drug that Alvarazola, she had used and she said the same, I think in her clinical trial, it was effective in 40% of people, is that statistically significant, obviously if you're in the 40% it's great, but this goes back to us establishing what's driving your particular version of the condition, because some of these things are effective in some people and some of them are absolutely not. Somethings that you do know about or that you have studied, you did a systematic review and a case report looking at methylphenidate for cognitive dysfunction in long-covid patients. Tell me a little bit about that as a drug, as a treatment and what your findings were, what you saw. So that review was in collaboration with psychiatry and the long-covid clinic or the PASC clinic. The methylphenidate is an effective medication. However, in patients with long-covid, it did not fully restore their cognitive function. I just want to highlight that by enlarge the clinical experience is that certain medications can be effective in some patients, but not in others. So I think in our review of our cohort of patients that were tried on methylphenidate, after the publication, I continued to follow them. Many of them did not find a significant improvement in their overall cognitive function and have required either higher doses or shifting to other stimulants or shifting to other medications that address attention and deficit. So the way that I think you did mention that, I mean, they didn't, it was only a low dose of it that you were using. So that did temper the effectiveness of the disease. Yeah, we started with very low doses. In some patients, even 2.5 or 5 milligrams of methylphenidate, which is a low dose. And I think we maxed out at 10, but there's possibility for higher doses in some patients being more effective. And it really depends on what the goals are, right? Or what are we qualifying as effectiveness? Yeah. Now, methylphenidate is the drug that is used most usually to treat ADHD. And it is a central nor repinephrine and dopamine reoptake inhibitor. And you explain to me, therefore, what the impact on the brain or what you are trying to do to someone's brain when you treat them with it. Right. So we want to activate the prefrontal cortex, which allows you to, you know, it's what makes a difference between humans and other animals that don't have a prefrontal cortex. So it's really the centers for higher thinking and executive function, right? So we want to prime the access to those areas. So in doing that, we are helping the patient be able to stay focused for longer, be able to remember and use their working memory. So that is the reason to use those medications. So in the correct patient who is having a lot of cognitive symptoms that have the profile of ADHD, it is a good tool to use. However, it is not the perfect tool for everybody, right? So I have found myself trying different medications that have different types of mechanisms. For example, I also use a mannedine, which is a medication that was initially created for antiviral, anti-flu. However, the antiviral properties are not really strong, so that fail out of favor. However, it does have a couple of other functions that help, especially in, there's a lot of strong evidence in the patients with traumatic brain injury. And it also helps activate by increasing the reoptic of dopamine. So it can increase their connectivity and their function. So it, in some patients, that medication can be super helpful and it helps them stay more alert, decreases their daytime somnolins in some of them. And it's more helpful than, than on fetamin salts in some people, which are that group of medications like Adderall and Ritalin or so. And then we have things like Modaphanol. Modaphanol is another medication that we use for cognitive dysfunction. This one medication has a approval for use in patients with hypersomnia or obstructive sleep apnea that have daytime somnolins in some patients. It's a stimulant. So it is a stimulant, but it's not an amphetamine stimulant. Again, increasing dopamine and this particular medication can be quite helpful in those patients that have more of a hypersomnolins picture or patients that are having to take naps during the day and feeling like they're, I always ask them like, what does your fatigue feel like? It's really telling. Some patients will say that their fatigue feels like their eyes are heavy and they just want to fall asleep right there. And I find that using Modaphanol in that population or our Modaphanol, which is kind of first cousin, can be helpful in those patients. However, we have other patients that their fatigue is described as tired but wired. And those patients typically are not helped by this medication. So it's working out. Those patients may be pushed into an Ava Adrenalized state because they have some dopamine in insomnia and they genuinely are tired about why they've maybe got too much adrenaline going through. Right, like their sympathetic system is an overdrive, right? And those patients will sometimes describe suddenly waking up in the middle of the night with palpitations and hyperventilating, vivid dreams and, you know, an inability to sleep. Sometimes they can spend days without sleeping. So that's a different presentation. The one part of what we started off this dialogue with, I was talking about there being two sides to getting better care, one of which is having these resources to be able to send your doctor and having a doctor who's prepared to look at them and be curious and brave and patient-centered and all the rest of it. And the other part is how do you handle that relationship with the doctor yourself? What can you do to make that relationship work better? How can you give yourself the best possible chance of getting the best version of that doctor? Because they're under stress. They don't have a lot of time. You've got to make their job as easy as possible and ideally talk to them in a way that will get them to where you want them to be as quickly as possible. Without ruffling feathers. Exactly. You can't go in and say, "I've got viral persistence." Because as soon as you say that, they'll go, "God." Because you can't prove that you do. If there was a test for it, great. You could go in with your test results and then they'd have some guidelines and messages about it. But at the moment, anything that you go in, which is essentially an assumption or a… Any kind of certainty and a thing like that, you don't say what you think you've got. Just go in with your symptoms and ideally write all of your symptoms down in advance and quantify what that symptom means. Exactly, Jess. You talk in the long-hated hamburger about keeping a symptom diary. It really sounds like a simple thing. Once you actually start doing that and start yourself to have this overview of what's going on in your body. And I don't know if you did this, but I started doing it really, really early on and I actually just had a kind of score for certain things to make it really simple every day. So every day I was able to see what I'd done and what had flared things and you start to see patterns. And if you go into your doctor with that and it's absolutely individual as to how detailed it, people want to make that, whether it relates to, if you think that you're having some kind of histamine related, triggering something or that activity is triggering something, it's really, really worth noting down those things that cause a flare. Maybe some people will still have absolutely no idea, but if you start with that simple diary, it can be from putting it down on paper that patterns start to appear. And as simple as I went for a walk on Tuesday and on Thursday I was feeling terrible. So you can begin to see that you've got post-exertional malaise or you've got an M. Caspeler and it starts to help you and therefore the doctor to understand what might be your triggers and what might be the shectery of your illness. But it is also a degree to which it makes it harder for the doctor to dismiss stuff if it's written down. If you write it down and if you quantify it in a way of being able to say something like this is how many hours sleep I get at night, this is how many functional hours I have in the day where I can do basic tasks. This is how many days of work I've had to take. By putting numbers on this stuff, it crystallizes it in their head and it makes them, in a sense it psychologically forces them to see the scale of the problem, which when you go in and say I've got headaches and I've got fatigue. It's very easy for them to say yeah, but if you go in with a quantified problem that's written down, then you're instantly taken seriously and that whole challenge and that problem of, are you feeling anxious? The chances of getting that back un minimized. Now you may still get that back and if you do, you get a new doctor. Just find another one. Move practice. Ask for another doctor at the same practice. Until you start to get somebody who listens to you and makes you feel like they believe you and they want to help you and they're prepared to go on a journey with you to try and find out how to help you, because that's what it's gonna be. Then you're not gonna walk in there and walk out with the solution. It's gonna be a journey of trying things, doing tests, getting results back, and that's good. - And let's just talk about that because when you go in there initially and you talk in the long COVID handbook, you might not be able to do all of this in one 10 minutes appointment. Structure something that you say, no, I need three appointments across X amount of time. What you can manage in your body, can you manage one 10 minute appointment a week? Preferably with the same sympathetic doctor because there is a workup that these doctors should be offering you as a basic. They should be able to do some basic tests dependent on your situation. And this is really important. One of the primary functions of that is to rule out structural or other serious conditions that could be treated separately. Don't assume that you have long COVID, MECFS. Don't assume that that's what it is. You need to go in there with your symptoms and have it fully assessed medically to make sure that anything that is treatable can be removed from your symptoms. - And you may have long COVID and you may also have other stuff and they may be able to find other stuff that makes the quality of life much better. So the general rule is don't go in to the doctor and give them a diagnosis, go in and give them symptoms. That's kind of the golden rule because the hackles go up as soon as you give them a diagnosis because that's their job. - Yeah. - And the other thing that's quite important is you'll obviously have loads of questions right and down because in the heat of the moment and in that short time, they'll forget them, right and down, prioritize them, work out which ones you really need to ask in this session and get those down. And if you're really struggling with brain fog, consider trying to take someone with you. - Yeah, it's a really, really good piece of advice is to take someone, if you have someone in your life that can advocate for you that believes you because you need it to be someone, what does the albarezola describe it? You need a quarterback on your team. It needs to be someone that is there to back you, not someone that's dragged there reluctantly. That first appointment that I went to with a physician, I had an A4 page with columns down two sides of my list of symptoms. And it's only from having that full list that I essentially presented him that he understood the severity and complexity of my issues. And actually, I did go to every single one of my appointments alone. And because of my brain fog, I'm really good at writing things down. But because of my brain fog, I do wish that I had someone there who had a clear brain to help me with, not just afterwards, but to help advocate for me within those appointments, because the other thing that I found in going into those appointments in the early days is because I had spent so long feeling that my client was not believed. And because of what this does to your body, I was really, really stressed and visibly on edge going into these appointments because I was so desperate to get help. And I think if I'd had someone there who was calm and who was able to advocate for me, it would have been really helpful. - There's one other thing that's worth mentioning as well is you might go into this appointment and you could have an hour of stuff that you need to say to this doctor. And there isn't time for that. You have to work out the right way of doing it. And I talk a little bit in the long-covered handbook about how you can plan the 10-minute session you've got to be able to walk in and say, "Hello, I've got problems with headaches, fatigue, skin rashes, stomach problems, eye problems, I've lost my sense of smell and taste." But in this session or in this appointment, I would just like to talk about the headaches, please. And because that-- - It's primary. - Yeah, primary things. That's causing you, that is causing you disabling in your life, that is causing you to not be able to live fully. - And-- - Yeah. - That's ridiculous. It all contributes to you not being able to live fully. But it's about taking the thing that is the worst, almost the most debilitating. - And this is why you need to have booked three appointments in advance, so you get about once a week for three weeks. And it means that, okay, in this appointment, we're going to talk about the headaches and the skin rashes. In my next point, yeah, I'd like to talk about this. And then you can actually break it up. And that just means that you get more out to that appointment. Some of the times, so it doesn't just get eaten by you giving a live story, by actually just focusing down on the things you need the most help with at any given time. You get the best chance of the doctor asking you the right questions and being having enough time to think about the problem and actually maybe do something for you that can help. - Now, I would-- I appreciate that medical systems are different. If you're, for example, dealing with the NHS, it's not even always possible to get one appointment, let alone three, but I would encourage you to ask for those three appointments, preferably to be with the same person. Because the worst thing when you are fatigued and frustrated is to have to go into each one of those and explain yourself from the beginning. Regardless of what been put in your notes, you do deserve some continuity of care. One of the other things, along with that, long list of symptoms that you can share with your GP and this is not an advert, is to use some kind of heart rate monitor pacing device to be able to go into your doctor with data. Goes back to what we were talking about before about the tracking your symptoms, writing a diary. But you can get an app that is essentially tracking your energy levels, tracking your heart rate and that you can input certain amounts of details. And that can actually be a really, really useful way. I have had doctors say to me before, I think it was Dr Melanie Hopper who just said, "When patients come in with this data, it is immeasurably helpful for me because I am able to see what they're able to do, see their limitations and see what has triggered things for them." So when I was talking to you, Dr. Alba Rosalosh, with all of her use of off-label drugs, she said this. (upbeat music) - I can only hope that this momentum, that the world of ME/CFS and complex chronic illness conditions has will lead to discovering so many new things. And I always tell Peter, like, in 20 years from now, we're gonna be just laughing at the things that we were trying because hopefully we'll have so much more understanding and so many more powerful things. But at this moment, we do what we can. Yeah. - And one of the things that you do, you do, or just mention, is that you do recommend visible to your patients. You're at the same level. - 110% invisible. And you can use this for whatever you want. I love visible for my patients. - Is that just general pacing? - The pacing is one of the most effective. - Pacing is, there's not enough medication that I can throw at this patient, that would help more than pacing. Pacing is key. And particularly, my patients that have been exposed to medical trauma, that have been minimizing what their bodies signals are, that have been disconnected from their bodies, because they can't make sense of what they're experiencing. This app allows them to follow the cues and listen again to their bodies and understand how to cue into their own biofeedback, so that they can manage their energy and prevent pain and thus improve functionally. So it's amazing. - Is it within our remit in this podcast to talk about the difference between public primary care providers and private doctors, specialists, and the differences between those as an option for people? - I think it's challenging. - There are a number of specialist private doctors and they are familiar with the state of the science at the moment and some of them will have specialties, some of them will have preferences about the way they want to treat, but they will have seen a lot of patients who have a lot of experience with patients and they're generally happier to prescribe things off label than your normal GP would. So if you can afford it, you do the thing with private appointments, you get more time. Now it is expensive, but you ultimately probably will get to some kind of solution sooner than you would do going the standard GP. - Yeah, and obviously we understand that that is not possible for everyone, particularly if you're suffering from one of these conditions and finances are even harder, but understand the value in even just that first appointment because sometimes also you can see someone privately and that can then help you go back to your primary care provider and be funneled into the correct specialties for whom you need to see. I have had that. - Me too, so very early on, I was struggling horrifically with rashes and stomach problems and I saw a private GP who said, yes, this is classic MCAS, this is back in 2020 still at this point and said, try some anti-histamines and oh my god, did they make an immediate difference? So rather than having that private perspective. description forever and having to continually pay for that private prescription, it then got referred across to my NHS GP and ever since then, all of my anti-histamines have been described to my NHS GP. So you don't necessarily have to be in the care of a private doctor forever. You can actually use a single or double consultation with a private doctor and then take that back through and those prescriptions back through to NHS GP and discover them with them and you might then have more luck. However, not in the US because every single one of their appointments is private. So I suspect that they are paying for every single prescription. So I hope that this has provided a small basis. As we said, everything will be included in the show notes. The clinical care guides that we spoke about are quite dense, but your primary care practitioner should be able to interpret them. If you have the capacity, take a look at them, do take a look at resources such as the Long COVID Handbook and please write to us and let us know how we can help and further resources that we might be able to share in the future that can help you navigate these basic points to start getting you to a place where you're being treated. Jess. One little point on those clinical care guides, they are dense, they're a lot, I opened them up and my brain's day went, so what I did, I just chucked a link straight into my personal AI and said, please summarize this for me. And then you can interrogate its answer and say, does it say anything about this? Does it say anything about that? Tell me more about this bit. That is probably the most long COVID-friendly way of digesting this kind of information. That is fantastic advice. Let's utilize those resources that we have out there. Thank you so much for joining me to stages and thank you all for listening. We wish you the best week possible. Say it for me. Thank you for listening to Make Visible. Please do like, follow or subscribe to listen to our next episode where we'll be uncovering more insights into complex chronic illness. This was brought to you by the team at Visible. A group of scientists and engineers whose lives have been affected by energy limiting health conditions. We're building wearable technology that's helping 100,000 people measure and manage their complex chronic illness. To find out more about what we're working on and how Visible could help you, visit our website at makevisible.com. [BLANK_AUDIO]