Navigating medical appointments

Emily Kate Stephens (11:17): Yeah, so that's interesting, isn't it? 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, an assistant 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

Alba Azola (12:01): That's the ultimate goal, yeah.

Emily Kate Stephens (12:03): With the ability to treat people.

Alba Azola (12:05): 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 these patients is key, because there are 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 in order for them to manage their chronic illness, because that knowledge is not disseminated as needed to meet the need.

Emily Kate Stephens (12:48): 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 front line.

Alba Azola (13:10): Yeah, yeah, absolutely. And there's many barriers to achieving that, but 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 these illnesses is a big barrier. Yeah, it's a huge barrier.

Emily Kate Stephens (13:35): 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.

Alba Azola (13:51): Yeah, this was a really great experience, collaborative experience in order for us to meet the need. 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 a PCP that doesn't have time, that is overloaded with tasks and seeing patients for 15 minutes, what can they do?

Emily Kate Stephens (14:45): And you break it down actually to the point of, if this is what's happening, these are the potential treatments for this patient.

Alba Azola (14:52): Correct.

Emily Kate Stephens (14:53): 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 Rowe, there are so many things that you can do to treat the individual components of these conditions.

Alba Azola (15:12): Correct.

Emily Kate Stephens (15:13): And that's what you break down in that guide.

Alba Azola (15:15): Yeah, it's really being able to make this collective knowledge that has been gathered by clinicians that have 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 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 reincorporate to their tasks 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 the evaluations that are going to make meaningful change.

Emily Kate Stephens (16:14): Has that guide now been disseminated? Or has that now been shared with people? Or at what point is that?

Alba Azola (16:21): Yeah, that's been published. I mean, it's public access, so people can actually download them easily. I think that in medicine, the dissemination of information takes decades.

Emily Kate Stephens (16:35): Yeah.

Alba Azola (16:37): Unfortunately.

Emily Kate Stephens (16:38): So it hasn't been disseminated enough?

Alba Azola (16:40): 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 the SARS-CoV-2 pandemic. I think physical medicine and 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 of 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.

Emily Kate Stephens (18:22): And I think you mentioned earlier this idea that you've 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 impacted.

Alba Azola (18:50): 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 were not thought of 100 years ago. However, it has also come at the cost of the patient with a complex chronic illness, because these patients typically end up needing sub-specialized care by multiple doctors, which in theory would have to be familiarized with this type of presentation. It doesn't happen. So you have this patient that has limited energy, limited ability to really visit all of these specialists. 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 quarterback on their side that understands the initial assessment and initial interventions that address different parts or pieces of their comorbid conditions, and understands when it's needed to be referred out to a sub-specialist and which ones can hold back, or what the timing is, keeping in context, you know, the fluctuations of the severity of their symptoms, which is part of the disease at this point.

Emily Kate Stephens (20:27): So it's not that there is nothing we can do. Gez, 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?

Gez Medinger (21:00): Okay, so I think you can break it up 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 ME/CFS, which was updated 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, severely damaging their quality of life.

Emily Kate Stephens (22:18): And 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. And so it was very much about self-management. Is that what you...

Gez Medinger (22:35): Broadly, broadly speaking. So we've also got the DHSC ME/CFS delivery plan, which is where the government has committed £845,000 to research funding and committing to GP training. And that's going to take a little while to come through. Now, one thing on this subject, something that Dr Azola said that stuck with me when she was talking about creating these compendiums and what it takes to bring this knowledge together, is that it takes decades for this knowledge to be disseminated amongst the medical community. And 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. So we have, what's called, I believe the one that Dr Azola was involved in is called the PM&R compendium, will be in the show notes. We've also got the Bateman Horne Center, which has put together an excellent clinical care guide as of May 2025. And then there's a PNAS patient survey by Eckey et al, also be in the show notes. Now, 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? Right? And that exists in the PM&R one, and the Bateman Horne one talks about this at some length. So I'll just run through some of the stuff it's talking about here.

Emily Kate Stephens (24:15): Yeah, yeah, do. Because 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 Horne clinical care guide does brilliantly.

Gez Medinger (24:27): 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 doctor to prescribe for you if you're lucky. And on that list was things like beta blockers to handle POTS, ivabradine, and antihistamines as the main drug toolkit. And that was pretty much all you might be able to weasel out of your GP at the time. Now, let's say that you send this Bateman Horne document to your GP. You might have more luck in the States, perhaps, than you would in the UK, given that they might take 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. But let me run through some of the parts of the condition and some of the things that are on the table now, potentially, as off-label treatments. So for dysautonomia and orthostatic intolerance, I.e. POTS, we've got the beta blockers propranolol, atenolol, metoprolol, which are recommended. For, this is a new one, for neuroinflammation and post-exertional malaise, or post-exertional neuroimmune exhaustion, as Todd Davenport, we've talked about, exactly, LDN. So we're now actually putting LDN down on paper and saying, you can, maybe should, try this. And there are trials up and running for it.

Emily Kate Stephens (25:39): Multiple trials. Yeah.

Gez Medinger (25:41): 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 Bateman Horne is, beyond the standard H1 and H2 blockers, which are antihistamines, also mast cell stabilisers like cromolyn sodium, ketotifen, gabapentin or pregabalin for neuropathic pain affecting sleep. So we've got a few more tools in the toolkit there for MCAS, which may potentially help. And then we've also got talk of gabapentinoids, as well as Mestinon, which is, I don't quite know what it is.

Emily Kate Stephens (26:29): Pyridostigmine.

Gez Medinger (26:30): There we go, thank you.

Emily Kate Stephens (26:32): Actually, Alba Azola is part of a trial for that, but it's also being trialed by David Systrom. There are various places that are trialing it for Long Covid. What do you know about it?

Gez Medinger (26:43): 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 an acetylcholinesterase inhibitor. And that might not make a lot of sense to you. But essentially, we have a problem where acetylcholine builds up at nerve-muscle junctions in the autonomic nervous system. And this may be responsible for some of the dysautonomic symptoms we experience. The drug 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 and ME/CFS 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 at 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 demand, which seems to be impaired in Long Covid. We've certainly got issues around oxygen transfer. So the other big question with a lot of these drugs is, what are the side effects like? Generally speaking, not awful. It tends to be GI related, so nausea, cramping, increased gut motility, things like that.

Emily Kate Stephens (27:52): 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. Alba Azola also, she talks about using midodrine, pyridostigmine, she talks about ivabradine, she talks about methylphenidate and modafinil. 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 were getting onto this in the Bateman Horne document. It's another big thing that has to be handled if people are to heal.

Gez Medinger (28:47): Yeah, I completely agree. We've spoken about sleep before, obviously. Absolutely critical. Just one final thing on Mestinon: not a magic bullet. Nothing is yet. In that other document I mentioned, the PNAS patient survey, it came back with a 41% net improvement score. So not amazing. We're not talking 99% where, 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, your mileage may vary.

Emily Kate Stephens (29:26): Yeah, there was another drug that Alba Azola 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. Some things 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.

Alba Azola (30:18): Yeah.

Emily Kate Stephens (30:19): Tell me a little bit about that as a drug, as a treatment, and what your findings were, what you saw.

Alba Azola (30:27): So that review was in collaboration with psychiatry and the Long Covid clinic, or the PASC clinic. Methylphenidate is an effective medication. However, in patients with Long Covid, it did not fully restore their cognitive function. Which I just want to highlight, that by and large, 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 deficit. So the way that...

Emily Kate Stephens (31:32): I think you did mention that in the review though, didn't you? That it was only a low dose of it that you were using. So that did temper the effectiveness of the drug.

Alba Azola (31:42): Yeah, we started with very low doses. Some patients even 2.5 or five milligrams of methylphenidate, which is a low dose. And I think we maxed out at 10, but there's a 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?

Emily Kate Stephens (32:05): Yeah. Now, methylphenidate is the drug that is used most usually to treat ADHD.

Alba Azola (32:12): Correct.

Emily Kate Stephens (32:13): And it is a central norepinephrine and dopamine reuptake inhibitor. Can 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?

Alba Azola (32:26): Right, so we want to activate the prefrontal cortex, which allows you to, you know, is 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 amantadine, which is a medication that was initially created for antiviral, anti-flu. However, the antiviral properties are not really strong, so that fell 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 reuptake of dopamine, so it can increase their connectivity and their function. So in some patients, that medication can be super helpful, and it helps them stay more alert, decreases their daytime somnolence in some of them, and it's more helpful than amphetamine salts in some people, which are that group of medications like Adderall and Ritalin or so. And then we have things like modafinil. Modafinil is another medication that we use for cognitive dysfunction. This medication has approval for use in patients with hypersomnia or obstructive sleep apnea that have daytime somnolence. In some patients...

Emily Kate Stephens (34:54): So it is a stimulant?

Alba Azola (34:56): 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 hypersomnolence picture. 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 modafinil in that population, or armodafinil, 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.

Emily Kate Stephens (35:40): Yeah, yeah. Quite a common one, isn't it?

Alba Azola (35:43): Yeah, and those patients typically are not helped by this medication.

Emily Kate Stephens (35:47): So it's because those patients have maybe been pushed into an over-adrenalised state because they're suffering from insomnia, and they genuinely are tired but wired. They've maybe got too much adrenaline going through.

Alba Azola (36:01): Right, like their sympathetic system is on 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.

Gez Medinger (36:33): 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 a 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.

Emily Kate Stephens (37:15): Without ruffling feathers.

Gez Medinger (37:17): Exactly. Don'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 with your test results, and then they'd have some guidelines and they'd just think about it. But at the moment, anything that you go in with which is essentially an assumption, or any kind of certainty, anything like that, 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.

Emily Kate Stephens (37:44): Yes, exactly, Gez. You talk in The Long Covid Handbook 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 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 MCAS flare, and it starts to help you, and therefore the doctor, to understand what might be your triggers and what might be the trajectory of your illness.

Gez Medinger (39:13): I think there's 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 a 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 crystallises 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 are minimised. Now, you may still get that back. And if you do, 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 going to be. You're not going to walk in there and walk out with the solution. It's going to be a journey of trying things, doing tests, getting results back.

Emily Kate Stephens (40:21): 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-minute 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 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, ME/CFS. 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 symptom set.

Gez Medinger (41:31): 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. The other thing that's quite important is you'll obviously have loads of questions. Write them down, because in the heat of the moment, and in that short time, you'll forget them. Write them down, prioritise 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.

Emily Kate Stephens (42:04): Yeah, it's a really, really good piece of advice, 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, as Alba Azola describes 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. 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 like I 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.

Gez Medinger (43:38): 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 Covid 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.

Emily Kate Stephens (44:11): And you said the primary... Yeah, the primary thing that is causing you disablement in your life, that is causing you to not be able to live fully. 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.

Gez Medinger (44:33): 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 appointment, I'd like to talk about this. And then you can actually break it up. And that just means that you get more out of that appointment time, so it doesn't just get eaten by you giving a life 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 having enough time to think about the problem, and actually maybe do something for you that can help.

Emily Kate Stephens (45:03): Now, 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's 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. It goes back to what we were talking about before, about 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 into, and that can actually be a really, really useful way. I have had doctors say to me before, I think it was Dr Melanie Hoppers, 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 Dr Alba Azola, with all of her use of off-label drugs, she said this.

Alba Azola (46:45): 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. I always tell Peter, in 20 years from now, we're going to 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.

Emily Kate Stephens (47:13): And one of the things that you do do, I'll just mention, is that you do recommend Visible to your patients. You're actually really enjoying...

Alba Azola (47:19): 110%.

Emily Kate Stephens (47:20): Using Visible.

Alba Azola (47:21): And you can use this for whatever you want. I love Visible for my patients.

Emily Kate Stephens (47:26): Is that just general pacing? Pacing is one of the most effective...

Alba Azola (47:30): Pacing is... There's not enough medication that I can throw at these patients 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 body 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 PEM, and thus improve functionally. So it's amazing.

Emily Kate Stephens (48:24): 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?

Gez Medinger (48:35): 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, they'll 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.

Emily Kate Stephens (49:09): 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 funnelled into the correct specialties for whom you need to see. I have had that.

Gez Medinger (49:42): 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 antihistamines, and oh my God, did they make an immediate difference. But rather than having that private prescription 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 antihistamines have been prescribed by 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 your NHS GP and discuss them with them, and you might then have more luck.

Emily Kate Stephens (50:23): 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. Gez.

Gez Medinger (51:16): One little point on those clinical care guides: they are dense, there are lots. I opened them up and my brain today went... So what I did, I just chucked the link straight into my personal AI and said, please summarise 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.

Emily Kate Stephens (51:39): That is fantastic advice. Let's utilise those resources that we have out there. Thank you so much for joining me today, Gez, and thank you all for listening. We wish you the best week possible.

Gez Medinger (51:56): Same from me.

Emily Kate Stephens (52:06): Thank you for listening to Make Visible. Please do like, follow, or subscribe to listen to our next episode, where we'll be uncovering more insights into complex chronic illness. This was brought to you by the team at Visible, a group of scientists and engineers whose lives have been affected by energy-limiting health conditions. We're building wearable technology that's helping 100,000 people measure and manage their complex chronic illness. To find out more about what we're working on and how Visible could help you, visit our website at makevisible.com.

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