Jill Brook: [00:00:00] Hello, fellow POTS patients and beautiful people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we are interviewing Dr. Asad Khan, retired physician and respiratory consultant from Manchester, England, and expert on long COVID and associated disorders like POTS, dysautonomia, ME/CFS, MCAS, and the lot.

Dr. Khan is a prominent expert and advocate for those with these conditions, but this did come with a high cost to himself as he has long COVID, which is why he is now retired. But he is still a strong advocate and eloquent voice representing long COVID patients. Dr. Khan, thank you so much for joining us today.

Dr. Asad Khan: Oh, thank you ever so much, Jill. Uh, I'm so pleased to be here. It's a real privilege.

Jill Brook: So maybe we can start by just sort of introducing people to your background. Do you mind talking about maybe why don't we start pre COVID. Do you wanna talk about your, your training and background and what you were up to before COVID?[00:01:00]

Dr. Asad Khan: Sure. Um, so I qualified for medical school in 1998. So I've been a doctor for quite a number of years. And, uh, just before I fell ill with, um, the COVID infection that led to my long COVID in November, 2020, I was working as a frontline respiratory consultant, seeing all the acutely ill COVID patients that were coming into hospital in the emergency department, but also on the respiratory wards.

And the particular week that I caught the virus, I was assigned to this ward where there were 28 patients who had respiratory COVID. So there were patients who were breathless and who were coughing and we, um, were assigned for a week. So I spent all day there. And, uh, I guess [00:02:00] the term that your listeners might be more familiar with is, um, the attending.

So that's what I was, and, and that's what I've been since 2009 in, in various different hospitals in, in the UK but also in New Zealand. So, as was the case with a lot of hospitals, we didn't have adequate protection. So we had what was called PPE, but it wasn't really. It was a surgical mask and gloves and plastic apron.

And, uh, we were meant to assess these patients wearing that. And we were told that this was sufficient because the virus was spread by droplets. And that the proper PPE, the sort of FFP3s, the N95s, that was all reserved for what they called aerosol generating procedures, which, um, you know, is a total nonsense [00:03:00] because humans are aerosol generating creatures.

We create aerosols when we cough, when we talk, when we laugh. Initially in the first peak, it was a resource problem, but by the time I fell ill it wasn't a resource issue. It was more a case of, well, the government had decided that the guideline would be that surgical masks were enough and they didn't want to be seen to be going back on that.

Because that would make them lose their credibility and, uh, it would demonstrate that they weren't standing by their guidance and they, they got it wrong. So obviously governments don't have to admit that they've got things wrong 'cause that is consequences. And yeah, we were we were the fallout from that. I, um, I lost, uh, in our organization, which is the largest NHS Trust, which is the equivalent of a healthcare organization in the US,

so it's the largest one in the UK, we lost three, [00:04:00] actually four people. Four died. And a number of us got long COVID, in fact, um, the number who got long COVID in our organization run to several hundreds. Yeah, and I was, to my knowledge, I was the worst affected of, of all of them. And, uh, I just got sicker and,

by September, 2021, I was actually in really bad shape and, uh, I know this podcast is about POTS, so with specific reference to POTS, it was so severe that all I had to do was lift my head off the pillow and I'd be consumed by a wave of nausea. And my routine was this. I spend five to 15 minutes lying flat, but then I had gastroparesis, a paralyzed stomach, which often people with POTS have.

So I would get nausea from [00:05:00] the pressure of the stomach. So then I would have to lift my head up to relieve that sensation. And then obviously because you reduce your cerebral blood flow by doing that, that would give me a different kind of nausea. So, yeah, I mean, it, it, it, I laugh now, but it, it was torture.

And I remember at that time I also had extreme stimulous sensitivity where, you know, I couldn't look at a phone screen. I couldn't bear a sliver of light coming through the blinds. I couldn't tolerate anything more than a whisper. I actually could not tolerate my children being in the room. Just the, uh, the knowledge that they were there consumed so much energy that, uh, I, I used to get neuropathic pain in my hands, and I just thought, this is so bizarre.

Like, I, I've never come across anything like this. How can this be going on? It was only, you know, through my own [00:06:00] reading that I subsequently realized that I had a broken battery, like a lot of people with these energy limiting illnesses have. And things that normally you wouldn't notice, just consume your energy.

Yeah, so it was, it was, it was a very difficult time and I was in that position for several months. And, uh, I ended up being my own physician because the normal route by which you get investigated and treated in the UK just wouldn't work for me. I tried it, but, uh, got the same sort of feedback that a lot of people listening would've had.

It has the normal you know, maybe you're anxious. Uh, we don't know anything about long COVID. We're not sure what to do. So then began the process of actually proactively seeking out private physicians who had shown an interest in these conditions, or who maybe had a background in POTS or ME/CFS already. [00:07:00] And then

referring myself to them, getting assessed by them and then conveying their recommendations to my own doctor....

Jill Brook: wow.

Dr. Asad Khan: In the hope that they would follow through. And I was lucky to have a really good primary care physician who for the most part, you know, would follow those recommendations. But I know a lot of people haven't had that success.

But I guess the point I'm trying to make is that despite being medically qualified and actually not just medically qualified, but being in a senior position, it was the battle. And this is despite having knowledge of the system, having contacts, and I cannot imagine what it's like for people who don't have that privilege.

Their learning curves must be so much steeper than mine. And I remember, as part of my assessment, when I finally did manage to get into an [00:08:00] NHS hospital for autonomic testing, I was sent for tilt testing. And, uh, I remember going on the tilt table. I mean, getting there was a you know, a story in itself.

But anyway, uh, and I, I lasted, uh, I think probably all or two or three minutes, and I just felt like I was gonna throw up. So they abandoned the test because I couldn't tolerate it. And, uh, I remember a few weeks later getting a letter in which the reporting physician said, no evidence of autonomic dysfunction.

Because the, you know, I hadn't, hadn't hit the criteria on the tilt test 'cause I hadn't lasted long enough. So, you know, whatever changes there were didn't hit the targets. So therefore no evidence of autonomic dysfunction, when really it was just an [00:09:00] incomplete investigation.

And, and this has, this has become a bit of a passion of mine, a bit of a hobby where we are so attached to these numbers and the criteria for POTS are plucked out of the air, aren't they, you know, based on one study in the nineties and, you know, if somebody hits the criteria of 28 beats a minute increase on one day, what's to say

on another day they might not have 32. And, but so often patients are told, well, you don't fit the criteria for POTS, therefore we're discharging you. Off you go. And there is so much more to this condition than the heart rate changes, isn't there.

Jill Brook: And here in the United States, the insurance coverage for treatments oftentimes is riding on whether or not you meet some criteria or some number.

And being one beat per minute short can keep you from [00:10:00] having your drugs covered and tests covered and things like that. I don't know how it is in the UK...

Dr. Asad Khan: I mean, we have very poor access to autonomic testing. Full stop. You know, the, in the region where I live, uh, in the Northwestern England, there isn't a single specialist in dysautonomia, no neurologist,

and it's, it's a very large region. It's got a population of 5 million. And, um, so I actually had to go outta the region for, for my assessments. I had to go to London. And, uh, what, what you have is some cardiologists who have maybe a peripheral knowledge of POTS, which is linked to the criteria again.

And the typical sort of trajectory of the patient is they wait months after being referred by their general practitioner to see [00:11:00] these cardiologists or neurologists. In the meantime, they get no treatment because there is this thinking that you have to have a tilt table and you have to hit these criteria to have treatment.

And, uh, meanwhile the patient's done all their research and they've learned about salt and fluid and compression and lying down and, and avoiding, you know, heavy meals. So they've done all of that in this, in, in the meantime. Then they go to see the clever cardiologist who tells them exactly the same thing and, and then they have a tilt table test.

And then they, if they're unlucky enough not to hit the criteria, then it's off you go. So it's quite similar. Now, I'm probably being a bit harsh on my colleagues here because I do think, you know, things have moved on a little bit in the last five years because there obviously has been an explosion of people with autonomic problems.

[00:12:00] And there are some people in the, in the United Kingdom who do specialize in this, and were doing so before COVID hit. But they're just totally overwhelmed. But what we don't have still is physicians, whether they're specialists, whether they're primary care physicians, who will listen to the story and based on the symptoms and some office testing say, right, well, your symptoms are consistent with orthostatic intolerance.

There are things we can do for this in terms of drugs, even if you don't hit the criteria, let's try these treatments. And as you know, a lot of these treatments are actually quite cheap and quite safe. So I just think it's totally unacceptable that, uh, we have this strict approach that we have and, uh, there are

people who are doing office tests now. So the active stand [00:13:00] test or the NASA Lean test, and I know that they are controversial as to how well validated they are, but my thinking is that, well, if it's positive, it's actually really useful and gives you enough information to treat. But also, even if it's not positive and the patient develops symptoms that's telling you something, that there's something going on, the blood is not reaching the top half of the body.

That's what's going on, isn't it? For whatever reason. That is treatable. It might not be curable, but it, there are things we can do for this. And it's, it's actually really infuriating that a simple fact like that, we're not looking out for that actively, and we're not doing something about it. I, I, I just,

I just find it bizarre. I, I mean, I have I have POTS and I, right at the beginning [00:14:00] when I developed dysautonomia, and this is before I was in this really severe space, I had an inappropriate sinus tachycardia. So I was going at you know, 130, 140 beats a minute at rest, doing nothing. And I was like that for months.

So obviously my heart rate wasn't going to increase by 30. It was already quite high. You know, I know in some people it does, but in my case, that just didn't happen. But I felt dreadful on standing. I just couldn't tolerate it. So, you know, I, I never hit the criteria. I had never had a positive tilt test, active stand test or NASA Lean test, but does that mean that I don't have orthostatic intolerance?

Of course not. And the one test I really wanted to have, which nobody would offer me. It just wasn't available or I was told, no, we don't normally do that. We only do that in research settings, was the transcranial Doppler where, you know, you, you, you, you scan the cranium lying down and then [00:15:00] you sit or stand the patient up and see if the the blood flow reduces by a certain amount.

Jill Brook: Yeah. Yeah.

Dr. Asad Khan: And that is almost universally present in patients who have all static intolerance regardless of whether they hit the POTS criteria. If you look at patients with ME/CFS or if you look at the ME/CFS kind of long COVID patients there's been multiple papers that have demonstrated the same.

And it's a simple noninvasive test. And I just don't understand why, why we don't do it. So yeah, in a nutshell, I despair. And I despair because I was able to get some relief because I knew people and I managed should get my hands on medication relatively early. But I don't need to tell your listeners how long the average wait is before people get diagnosed with POTS.

And it's such a miserable condition. It's so debilitating. It actually causes [00:16:00] a significant reduction in the quality of life. I don't know how people carry on for years with, with, with those symptoms because it's not just the heartbeat, is it? It's, it's the it is hard to describe when you're at the worst that I remember lying flat and going, I wish I could actually make the bed flatter.

And I, well, it was as flat as it could be. I, I had no pillows and I remember actually having to tilt it , tilt my head downwards to be able to just sort of think.

Jill Brook: Wow.

Dr. Asad Khan: Yeah, it, it can be like torture. I mean, you know, I'm sure there are people who are much worse than that, and I'm sure there are people who maybe haven't experienced that severity of symptoms, but it, it, it, it is, it is a serious condition and it's, it's, it, it, it is disabling, it affects quality of life,

and just because it's not fatal in most cases, uh, doesn't mean that it's not important [00:17:00] or it isn't life-changing.

Jill Brook: Yes. And I'm sure that a lot of our listeners don't have a POTS diagnosis because of the reasons you said. Maybe their heart rate only went up 29 beats per minute. And so I'm, I'm sure that they're comforted a little bit to know that in your mind that all of those details are somewhat,

you know, not, not the most important thing when the rest of the picture is, is looking like POTS.

Dr. Asad Khan: I, I mean, what I would say is that these tests are useful if they're positive, but if they're negative, it doesn't mean that the patient doesn't have a problem. And then it really boils down to the story in a, as we were taught in ME/CFS school, you know, it's in the history in what the patient is telling you.

If the patient is telling you that they have symptoms that only occur or get worse when they are either sitting or standing, you've more or less got the diagnosis. Not many conditions do that. So, and [00:18:00] there are things you can do. So maybe the heart rate isn't going up, right. Okay. They, they stood for 10 minutes, or they've had a tilt table for 10 minutes.

The heart rate's not gone up. But they're feeling dreadful. Well, you know, as long as the blood pressure tolerates it, you can still try drugs like midodrine, to improve the circulation to your half of the body. You can still try pyridostigmine, you can still try again, if the blood pressure tolerates it fludrocortisone.

So things that you can do, it's not just about rate control. And uh, I just don't think patients get that. And yeah, I'm certain that that's the case here and I'm pretty sure that is the case in the US as well.

Jill Brook: And I think that's related to something I've heard you say before. I, I believe that you have said that COVID is not just a respiratory disease and that it's not benign to keep getting it.

Can you talk about that and sort of, the larger picture of long COVID besides [00:19:00] just POTS?

Dr. Asad Khan: Sure, sure. So, um. I mean, it's, it's an evolving area. But what we do know is that it is very well researched. We don't have all the answers. We certainly don't have any sort of approved treatments. Most treatments that we have are symptomatic or experimental, but we've got a reasonably good understanding of what is going on in the body in terms of the pathophysiology.

And not everything will be happening in every patient, but one thing that is happening in every patient where it has been looked for is the coagulation abnormalities. So, clots, thickness, thick, thick blood. So, um, I have collaborated with a group which is now international, but started off in a lab in South Africa.

Where Professor Resia Pretorius found small clots in the plasma [00:20:00] of long COVID patients. And, uh, this shouldn't have come as a surprise actually, because we know that patients with acute COVID had a higher incidence of, of clots. So a deep vein thrombosis, they were having uh, strokes, they were having heart attacks.

And actually, as the pandemic has positioned year after year, what we know is that the risk of illnesses where clotting is a factor such as stroke, heart attacks, pulmonary embolisms, the clots on the lungs, and uh, clots on the legs, whether they're in the arteries or the veins. If you compare the people who haven't had COVID, uh, and this was early on in the first second year of the pandemic to the people who have had COVID, the people who've had COVID have a [00:21:00] manyfold increased risk of these clotting conditions as compared to patients who didn't have COVID.

And this is quite scary actually.

Jill Brook: And it doesn't matter if they have long COVID.

Dr. Asad Khan: No. It doesn't matter if they got long COVID. So even if they had the COVID infection and apparently have recovered, their risk is increased in the coming weeks, months,

and also they seem to have a higher risk of things like cognitive impairment, and they seem to have a higher risk of things like Parkinsonism. And why is this? So when I say COVID is not a respiratory disease, uh, what I don't mean is that it doesn't affect the lungs. That's not what I'm saying.

What I'm saying is that it's not an infection of the lungs as people might think, you know, like the flu virus. It directly affects the lung tissue, you know, the, the breathing [00:22:00] space, the breathing tubes. That's not what's happening in COVID. What's happening in COVID is that you do inhale the virus through your nose and your mouth, but then what happens, it travels to different parts of the body through the blood.

So the blood vessels in the in the floor of the mouth. The, the virus goes into those and then through those veins it actually travels to different parts of the body. So it can go to your lungs, it can go to your limbs, it can go to your heart, other organs, which is why people present so different.

So you remember that in some variants, uh, you know, people seem to have more of a GI type of presentation. Others might have a sore throat, but even with the same variant, people present differently. And that's because it travels through the blood to different parts of the bodies. And what's happening in long COVID is that the [00:23:00] virus is causing persistent clotting, but the clots aren't cleared.

And these clots, they reduce the blood supply to different parts of the body, which is why the symptoms are you know, the, there, there's so many, there's more than 200 symptoms of long COVID and they seem to affect every organ. You know, you've got fatigue, you've got pain, got cognitive issues, breathing issues, GI issues, urinary, you name it.

And, and that's because different parts of the body get reduced circulation and the patient will develop symptoms related to that type of body. And that is certainly a mechanism that's playing a part. Now, it, I'm not saying that's the full story. There are other things as well. Uh, there's some evidence that there's, um, development of autoimmunity, particularly, you know, when the disease has gone on for long enough, [00:24:00] autoimmune phenomena can develop.

Uh, there is evidence of immune dysregulation. So, a lot of patients will have manifestations like MCAS, which as we know, you know, goes hand in hand with POTS in a lot of patients. And also there is some suggestion that the virus might linger in, uh, in patients. Now there have been attempts to grow live virus in patients with long COVID, but it's actually really hard because the live virus doesn't live very long outside the body and actually is probably hiding in it what we call immune privileged sites,

so sites that the immune system can't reach. To neutralize the virus, such as the eyes or the reproductive organs. So actually getting a sample from this really difficult as you can imagine. But what has been found is viral particles, debris which suggests that there may be virus resisting.

And the other, theme seems to be dysbiosis of, uh, the [00:25:00] gut. So leaky gut and sort of abnormal gut bacteria which, you know, give rise to all sorts of symptoms because if you've got a leaky gut, you'd have inflammatory material from your gut leaking into the blood and triggering reaction, triggering MCAS, triggering POTS.

So, so there's a lot going on. I think, you know, it's quite similar in some respects to what's happening in ME/CFS. But the thing that really stands out with long COVID is the clotting. It, it's that, um, it's of a severity that you don't really see with other viruses. And, uh, that is what they found in me.

I was in that quite difficult state that I described early on. And, uh, I heard that there was a doctor in Germany called Dr. Beate Jaeger, who was doing this treatment [00:26:00] called apheresis, which is blood washing. And a friend connected us and, uh, she said, I think I might be able to help you. Could you come over?

And, uh, I did. Uh, it was challenging to get to Germany, but managed somehow with the help of relatives. And, uh, they put me on this machine, which is a bit like a dialysis machine, but, uh, you have a tube in, in the blood vessels, the one arm, and then the blood goes into this machine and it gets cleaned of excess clotting material basically in the case of long COVID.

So that's what she was finding that these patients had a huge amount of clotting material, which is abnormal.

Jill Brook: Did they let you see it after what was left?

Dr. Asad Khan: I saw it. I saw it. And my clots were so brittle. They were so hard that normally this machine [00:27:00] is used to wash within three and a half and four liters of blood in one session.

At the beginning, I was blocking the machine at two liters because, yeah, because I, my clots were so brittle. And, uh, it was only through repeated cycles of the treatment and through being put onto anticoagulation that I started get, getting better results from this treatment.

Jill Brook: Knowing what you know now,

'cause I know a lot of patients are listening to this and thinking, do I need to go find a place to try an apheresis machine? Do you think that that the anti clotting treatments, just like the medications can be effective without having to do this drastic apheresis thing first? Or do you think that is essential?

Dr. Asad Khan: So, yes. I mean, that's a really important question because what we don't want is patients obviously forking out huge amounts of money to go and try experimental treatments. And what I can say is that, like with any treatment you [00:28:00] know, it works for some, in some patients, it works temporarily and in some patients doesn't have any effect.

And there doesn't seem to be any easy way of predicting who's gonna respond. So I had, I had I had a good response initially, but then I got reinfected and after that it didn't seem to do the same for some reason. And I wonder whether that's because one of the other pathologies became more prominent in my case.

So there hasn't really been a randomized controlled trial of apheresis, but then these doctors who are busy, you know, pushing the boundaries, trying to save lives, they don't have the time or the funding to do these trials. And, uh, you know, I, I owe my life to, uh, Dr. Jaeger and to, uh, professor Pretorius's work and to Dr.

Laubscher in South Africa, who who, who pioneered the anti clotting medication. But then again, you know, [00:29:00] the Dr. Laubscher is a busy clinician. He's seeing people from all over the world. He's not got the resources or the, or the funding to do a trial. We, we actually published a as a preprint a case series, which showed benefit.

But nobody, nobody would print it as a peer reviewed article because you know, there isn't a control arm. But then it's, it's really difficult because that requires quite a bit of investment and, uh, there doesn't seem to be the interest or the funding. And I think it's, it's become really political now.

Long COVID is inconvenient. It's, uh, a reminder of bad things for lot of people. Governments don't want to know. Because doing something about it would mean that you had to prevent people from getting COVID. And how do you do that? Would you do that by cleaning the air and setting up good ventilation systems,

you do it by introducing masking in indoor places when infected rates are high. Nobody wants to go [00:30:00] there. So if they went there, they would be admitting that they got it wrong all this time. So anyway, I'm digressing, but I guess what I'm saying is that science as David Putrino, who I'm good friends with, says is, is a club.

And you know, it's sometimes it's about who you know. And, um, the problem is that it takes a lot of money. It takes a lot of time to do these sorts of trials and patients don't have that time. In terms of, uh, the anticoagulation treatment, again like with any treatment, um, some people have had a really good result.

Others partial. Some haven't really had significant benefit. And it seems to be that, and again this is anecdotal, I have to be very clear about this, that the patients who have been sick for longer tend to be the ones where it's harder to demonstrate benefit. And I wonder that whether that's, again, because other phenomena [00:31:00] such as autoimmune phenomena

um, have sort of become established and treating the clotting's not gonna hack it. And obviously if you've got persistent virus or persistent spike protein, then yes, you can treat the clotting. But if you've still got that persistence, it's still gonna cause downstream problems. And we don't have a good way yet of clearing persistent virus, you know, there are antivirals, like paxlovid, but, you know, uh, the studies that they did on them two week studies didn't demonstrate benefit.

So we don't have answers yet. And we are left with people who are seriously ill, who are suffering, who some of them are taking their lives. And because we don't have these studies, um, there's a reluctance to treat. So they're relying on expensive private physicians who in the US I imagine don't take insurance uh, to try these treatments at their own [00:32:00] cost.

And there's not many of them.

Jill Brook: I only know of the long COVID clinic with Dr. Jordan Vaughn, who I believe is looking at the micro clotting with the same fancy microscope. And I believe that at that clinic maybe they're using some anticoagulation therapy. And is it three different anticoagulants you have to use?

Dr. Asad Khan: Yes. So, um, yes. I, I, I know Dr. Vaughn and I, I am aware that he is looking for the micro clots using the same method, and he's actually treating patients with the anticoagulation as well. And he sees people via telehealth as well.

But then again, I think, you know, he's a really busy man, trying to help people and not able to really spend time doing research. So the reason it's three anticoagulents, and again, I have to

say this very cautiously because what we, what we would never advocate is that anybody do this [00:33:00] on their own. Because I had expert supervision and monitoring for my treatment. Uh, yes, it's experimental and, you know, I was fully aware of the risks. I was fully aware of potential benefits. I was told that it might not work.

I went into it with my eyes open with somebody looking after me. And not everybody's gonna have that. So please don't buy this at home.

Jill Brook: We're not recommending this.

Dr. Asad Khan: No, absolutely not. But there's an, there's several kind of clotting abnormalities. So one is an abnormality in the clotting enzymes, the, the what we call clotting factors where you have excess formation of this protein called fibrin.

And so, this fibrin in long COVID is insoluble. So normally what happens is you form clots and with time the [00:34:00] body breaks them down. Um, and what doesn't seem to be happening in long COVID is that breakdown. So it is because these clots are tougher, more persistent that they give rise to symptoms.

So that's one pathway. And, but what one of the drugs does is it inhibits formation of that fibrin so that the body actually gets a chance to catch up and deal with the existing fibrin, 'cause otherwise, what's happening is the body's breaking it down, it's just being formed at the same rate. The other clotting abnormality is related to these cells called platelets, which are the cells that are really important in the initial part of the clotting cascade.

And, uh, what happens in COVID and in long COVID is that they become overactive. And, uh, so just to give you an example, [00:35:00] you know, I'm, I'm using very crude technology here, but my platelets should be like a dot. And, and, and mine were like rugby balls or, you know, when I saw them under the microscope.

Jill Brook: Wow.

Dr. Asad Khan: And, uh, yeah, so these platelets have receptors on them and, uh, you need to block them to inhibit their activity. And, uh, because there are multiple receptors, the more you can block, uh, the more inhibition you're, you're gonna get on the platelets. So, which is why there were two drugs that were used in my case and have been used in the preprint that we put out to inhibit the platelets.

So yeah, that's why three drugs have been used, because you can't just address one part of this abnormal clotting cascade. You, you have to have a multi-pronged attack. And in terms of risk [00:36:00] versus benefit, if you gave these three drugs to somebody who didn't have abnormal clotting, then they would have a really high risk of a very serious adverse event.

Bleeding. Uh, which could be serious. It could even be painful. But what seems to be happening in long COVID patients is because their clotting is already abnormal. They're hypercoagulable, they've got a tendency to form clots. The drugs are just restoring you to the normal clotting physiology.

But if you don't have supervision, you will not know when that point comes where actually you are restored and it's time to have that trial off and to see what happens. And, uh, that is where the danger lies.

Jill Brook: Right, right.

Dr. Asad Khan: Yeah. Yeah.

Yeah, it's a delicate balance. And which is why you need this expert [00:37:00] oversight.

Jill Brook: Mm-hmm.

Dr. Asad Khan: And it happened in my case, so I I was on these three drugs and I started them in September, October, 2021, and I'd taken them for a few months and then I, you know, I would together with my physician, make a decision to try coming off them, and each time I would actually relapse, my symptoms would come back with a vengeance.

On top of that, I had six re infections. So every time that happened. Yes. I, I deteriorated further, so I had to keep going back on the drugs for that reason. But then at the end of last year just on a routine blood draw, my GP found that I was anemic. And yeah, and then I I had to have a number of investigations for suspected cancer because there was um, bleeding from the, from the bowel.

Uh, so obviously the first thing to think of is, is bowel cancer. So anyway, I was clear on, on the [00:38:00] lower GI endoscopy, on the colonoscopy, but I had some erosion, so not quite an ulcer, but some areas of oozing on the gastroscopy in, in the stomach, and, uh, so, so then I had to reduce my anticoagulation.

So I'm actually now on one, one tablet rather than three, and I seem to be stable. I've not deteriorated. So it may be that in my case that part of my long COVID is under better control.

Jill Brook: Mm-hmm.

Dr. Asad Khan: That's not to say I don't still have symptoms, I do, but maybe there's another mechanism for that that's going on.

Um, yeah, and the other thing is that you can sometimes have bleeding that's quite silent. So I, uh, I was told that this erosion in itself wouldn't explain the anemia and that I must be having some bleeding from the small intestine, which is very hard to access. You know, you can't really get a, an endoscope down there.

And [00:39:00] actually, even if you do, it's really hard to treat any bleeding point in the small intestine because it's just really hard to access. So, so I was advised just come down on the anticoagulants and take some iron and see what happens. So it's, it's improving that but, but yeah, but this is with me obviously being you know, being sufficient, myself, being on top of it, making sure I have blood tests, making sure of action and having a very good family physician.

So I, I don't mean to, you know, scare patients or, or put them off, but I guess what I'm trying to say is that, you know, make sure that if you are going to try any long COVID treatment, that you are in the hands of somebody who has got the appropriate expertise and experience. And just be aware that not, not everything is gonna work for everyone.

That's really important to bear in mind.

Jill Brook: Well, and to some extent this is a reminder of how desperate some long [00:40:00] COVID patients like you have been to try some of these things. You wouldn't try them unless you, you know, didn't have a lot to lose. I suspect.

Dr. Asad Khan: Yeah, a hundred percent. So I mean, what I will say is that I am aware that a lot of patients do self-medicate with drugs that they buy off the internet.

And whilst, you know, I cannot in good faith advocate for that, I can totally understand it because it is so miserable and there is nothing to lose when you're in that space. And I remember just before Dr. Jaeger got me over to Germany thinking, I can't carry on like this, this is no life. And I I actively thought about physician assisted suicide because I don't know how people carry on for years and years in that state, but they do.

[00:41:00] I, I don't think I had it in me to do that. And but, uh, I think just the thought that my children was still young and also, then Dr. Jaeger just came on the scene just in time. That saved me. But yes, at that point I think I would've tried anything if, if it was available to me.

Jill Brook: Yeah.

And I guess just to give people. Just to give people hope out there. Um, I would want them to know that actually you last year, um, were part of the team that won a research grant from Standing Up To POTS to look deeper into the micro clotting. And so this is, even though it might not be getting widespread government-wide NIH funding, there is ongoing research looking into this and finding more ways to help people.

And so we hope that, you know, nonprofits like us are filling in the gaps.

Dr. Asad Khan: Yeah. Which you, you shouldn't have to in all honesty, but we're very grateful that you do that. Because I think it would be really fascinating to see what [00:42:00] is happening in POTS patients where their POTS isn't due to long COVID, or isn't due to ME/CFS.

And you know, they just got the, we're not saying just POTS, because POTS in itself is a significant condition, but where, you know, there's, it's not one of these causes. Uh, do they have abnormal clotting? And I remember a conversation, I don't know whether it was with you, where uh, we were talking about patients whose ports were getting blocked.

Jill Brook: Yes.

Dr. Asad Khan: Um, yes.

Jill Brook: That's research showing that POTS patients is, was small little study that was only put on a poster session, but in a children's hospital they looked at all of the different patient populations getting port placement and POTS patients I think had over 50% rate of getting blood clots. And they were the highest rate of any patient population there.

But the good news was that anticoagulation therapy did prevent it once they had learned that.

Dr. Asad Khan: [00:43:00] Yes. And I think, again, I'm quite excited about this area because if we can demonstrate that there is abnormal clotting going on in POTS patients, then that's, that opens up the possibility of treatments for POTS patients, even if they don't have blood ports.

Jill Brook: Mm-hmm.

Dr. Asad Khan: Um, and it might help their symptoms. Now, why that might be why, why, why would clots cause POTS? I don't think there's any easy answer to that, but it may be, it may be that, um, the, because there is this reduced circulation that the nerves that supply the blood vessels in the lower limbs, they're not getting enough oxygen and nutrients, and therefore when the nerves aren't doing their job, then the blood vessels they're supplying may not be doing their job and not contracting the way they should when you [00:44:00] become upright.

That's just one possibility. I'm sure it's a lot more complex than that.

Jill Brook: Yeah, no, I'm very fascinated by this topic because I, I was just having my own symptoms that were similar to those of people who had micro clots. I've had POTS for 30 years. Nothing changed when I got COVID. My POTS has, you know, remained very consistent all this time.

But I ended up getting the micro clot test from Dr. Vaughn's lab. I did have the micro clots that were present there. And further genetic testing showed that I had the PAI-1 genetic variant called 4G/4G, where you do not break down fibrin. And so that seemed like maybe one plausible way that I got to a similar place as some of these other people.

Dr. Asad Khan: Yes, yes. So that's a really important, uh, test, but it's not widely available. Uh, and not not every patient can get that covered, so it's just [00:45:00] not available in the UK. Full stop. And uh, and this actually brings me to a really important point, and, uh, a lot of patients will, will go to their doctor or their specialist and you know, they'll have a, a test done called a D-dimer.

Which, um, often is normal in, uh, patients with long COVID . And then the patient gets told, well, your D-dimer is normal, therefore you are unlikely to have abnormal clotting. So that happened to me. My D-dimer was completely normal. But what the D-dimer is doing, all it reflects is breakdown of clots.

It's, it's the, it's the breakdown products of the fibrin.

Jill Brook: And yours weren't breaking down.

Dr. Asad Khan: Exactly. So what's happening in, uh, in patients who have these clotting phenomena but have a negative D-dimer, is that the rate of transformation exceeds the rate of breakdown or there's just no breakdown happening. So, yeah, it's just [00:46:00] something to bear in mind and I just don't think lots of doctors are aware of this, nevermind patients.

Jill Brook: Yeah. Well this is so fascinating and, and this kind of brings me to another thing that you have mentioned, which is that evidence-based medicine is not always the thing that is best. And I'm wondering is that because it's not available when you're out here on the edges, or can maybe you can just talk about that more?

Dr. Asad Khan: Yeah, yeah, absolutely. So I mean, evidence-based medicine has come to mean, in this day and age, a randomized controlled file or systematic review, which is thought to be the highest level of evidence. But we were still practicing medicine before these kinds of studies. You know, doctors still existed and they still treated patients.

But what seems to have happened is that we've developed this sort of treatment paralysis now where unless something is [00:47:00] in a randomized control trial in a very high impact journal then there's no credibility or we don't have any treatments for that condition. And I think that's quite defeatist because the reality is that patients who I, I I'm not saying that these studies don't have a value.

Of course they do because they, they're clean, you know, they have uh, uh, group with one illness and you have a group which has, you know, no illness or very well defined as sort of minor illness. But people aren't like that. In real life all of the time. They're messy. They might have more than one thing going on.

And also what these trials show is at a population level, what is going on. So if you gave this treatment to say 10,000 people, then uh, and you gave, didn't give it to 10,000 and you [00:48:00] gave them a placebo, is there a difference in the rate of benefit between the two groups? And it may be that there isn't, but it may be that within that group of patients who got treated, some improved because of the treatment, but it just doesn't get captured in the calculations.

And that's like you said on the edges. So if you doing some basic statistics, if people remember their sort of bell shaped curve. Okay. So most people are sort of, you know. Below the thick bit of the curve, but there's, there's a, there's the tails at the two ends and some people are going to be there. So just because the patient isn't effective in a population doesn't mean that there aren't individuals where it might not, uh, be effective.

So that's one aspect of this. The other aspect of this is that we are, where we are with long COVID in that we don't have randomized control trials for treatments. Um, well we, [00:49:00] we, there's one or two very small ones, but by and large treatments are experimental. So what do you do then? Do we just sit back and go, well, we have to wait for the evidence.

We have been waiting five years, well, more than that now, five and a half years. And people are suffering. They are losing their jobs. They are taking their lives. Uh, they're getting more and more disabled. Um. That's where I think this slavish adherence to evidence-based medicine has caused a lot of damage.

Because it used to be that when there wasn't a proven treatment for a condition, a doctor would have the conversation with the patient and say, Hey we are not sure what the best reason for this condition is. But we do know is that in some patients, there's, uh, a signal that it's helped them either because there's a case report or a case series or there's, uh, you know, an [00:50:00] anecdote.

And it makes sense physiologically why this treatment might help. So here are the potential benefits and these are the potential risks. And shall we give it a go? Shall we try it for, I don't know, four weeks, six weeks? Then it becomes a case of joint decision making, and I think that's what's missing.

Jill Brook: Mm-hmm.

Dr. Asad Khan: Um, because I can totally understand why your average non-specialist would be reluctant to put their patient on anticoagulant treatment based on, you know, preprints or anecdote or case series. I totally get that, right. What I don't get is the reluctance to put patients on a beta blocker or their POTS or you know, uh, pyridostigmine or in the case of MCAS on [00:51:00] antihistamines, uh, H1 blockers, H2 blockers, because we, we don't have lots and lots of evidence for these, but we do have some.

Okay. Case reports and case series are still evidence of a lesser degree. These treatments that I've just mentioned, they are of low risk, so, yeah. I, I, I just I, I, I don't know whether I would've had the same approach before I fell ill. I, I, I mean, I hope I would've, but certainly now I just feel like we cannot justify doing nothing.

Jill Brook: Mm-hmm.

Dr. Asad Khan: And there is no evidence that doing nothing is beneficial to patients.

Jill Brook: Mm-hmm.

Dr. Asad Khan: Because a lot of doctors and they, these tend to be the people who are in big institutions, they sit in ivory towers, they pump out loads of papers. Like they don't have the give it a go attitude. They will say, well, there's no evidence that thing works.

Bring me the evidence. Well, that is my answer to them. [00:52:00] You know, what, what is the evidence that your doing nothing is helping this patient. So, I, I, I just hope that if any doctors are listening to this, that they they consider this and you know, there is information out there. It, it might not be the highest quality research, but there, there is some there, there are no guidelines in, in fact I did as part of the World Health Network, co-author, uh, guidelines, a Delphi guideline, which is a consensus guideline on how to investigate and treat long COVID.

Uh, so that's published.

Jill Brook: We will put a link to that in the show notes.

Dr. Asad Khan: Yes, absolutely. So that's something you can refer to, and it just gives you some broad guidance on, you know, things you can do.

Jill Brook: Well, that's huge. I mean, that sort of solves that problem for, for the physician who's hesitant to do anything without a consensus guiding that.

So thank you.

Dr. Asad Khan: No, no, it's, it, [00:53:00] it was a, it was a, you know, again, it, it was it was a challenge to get it out because what we call the vanity journals didn't want it because obviously it wasn't an RCT. And so it was a struggle. I can't claim credit for most of it. I wasn't the kind of lead on it, but I, I did know, obviously, um, I, I, was I playing a significant part in it?

So ultimately it ended up in a a journal that's maybe less well regarded, but it's still pretty decent. And, but I don't think that should matter. You know, it, what matters is, does this make sense? Could this be applied safely? And I think it can.

Jill Brook: Fantastic. Okay. Well, we'll be we'll be excited to, to read that from you.

And I wanna be mindful of your time, but I, I wanted to ask you one last question. You had previously mentioned or made reference to this experience having some silver lining for [00:54:00] you.

Dr. Asad Khan: Yeah.

Jill Brook: Can you talk about that?

Dr. Asad Khan: Yes. Yes I can. So, I remember when I was in that you know, quite debilitative state thinking, oh, why has this happened?

Like, you know, this is just so, inexplicable because I, my acute infection was very mild. And obviously we know that you don't have to have a severe initial viral illness to develop quite significant long COVID or ME/CFS. And I was really quite angry because, um, it was preventable in my case, I believe if I had been given the proper protection and I wasn't.

And I I felt, it was ironic that I was the one in, in my department of 50 pulmonologists who kept raising the alarm, kept saying, Hey guys, we're all getting sick. What is going on here? These masks are not sufficient. [00:55:00] We should protect ourselves. And I got told off for making people anxious or not setting a good example to the juniors.

And I, I still have those sort of WhatsApp conversations stored where I was raising the alarm and people were just sort of, you know, dismissing me as some kind of fear monger. And, anyway, the irony is that I got really badly affected and, uh, that had consequences and there were a number of consequences.

So, you know, there was family breakdown, first of all. So, my marriage ended and unfortunately it's not been amicable, so that's been quite stressful. There's been some parental alienation as well, so yes, I'm not able to see my children as often as I'd like. My son has developed long COVID as well, and he's quite significantly affected.

So he's, he is in school half the time and half the time he's just in bed at [00:56:00] home. And, but luckily I was able to get him some of the same treatments that I had been with from early, so he never quite got as bad as me. But he's still significantly affected. I wasn't able to work since November, 2020, right through till March, 2023 when I, uh, I was told by the occupational physicians that I was well enough to attempt a return to work from home just doing some remote work.

But then the department in which I worked, and I can talk about this openingly now, they refused to have me back and they said that you, your job was a full-time pulmonologist on the floor, you know, doing overnight calls, and that's what we want you doing, and we want you building up to that within, we want you building up to 80% of that within four [00:57:00] weeks.

I mean that it's totally unrealistic. And the occupational physicians agreed that that was ridiculous. So because the occupational physicians couldn't give my my chief the guarantee that that would happen, they said he has to just see what he can do. And then it may be that he ended up doing something totally different, maybe some more desk work that other people can spare and they do more of his clinical work.

That would be the logical thing. But that wasn't allowed. So I ended up fighting them through a grievance. And that lasted from March, 2023 to November, 2023. So my grievance was that I was suffering discrimination on the base of disability, which is a violation of the Equality Act in the UK.

And my, the other aspects of the grievance were that they hadn't reported my occupational exposure on the basis that they said I [00:58:00] could have got it anywhere, but I got it during lockdown on a respiratory ward. And I was the first case in my household. So where else would I have got it. I was driving to work solo.

I wasn't visiting any shops or anywhere else. So, so that was nonsense. So I challenged that because reporting is important potentially for insurance and, um, income protection and benefit purposes. And uh, and then the other thing that they didn't do was pay me something called injury allowance, which is basically a scheme in the National Health Service where if you get an illness or an injury that's due to work, then it protects your pay up to a level of 85% for a year from the moment it drops.

So when you exhaust your full sick pay. The injury allowance should cover you for a year.

Jill Brook: Mm-hmm.

Dr. Asad Khan: Uh, 80, 85%. And the, the idea is that allows you to then build up your return to work. It's a very good scheme. But I was [00:59:00] declined that on the basis that, well, we can't be sure that this was due to you falling ill at work.

So I challenged all of that and I won. I won and I was actually allowed back to work in November, 2023, but the combination of the stress of that process plus, you know, obviously the other personal difficulties and then a really nasty reinfection that I got in February, 2024 meant that I really couldn't get my hours up to a level that was sustainable.

So I, I would hit six hours a week and then I would crash. I'd be fine during those six hours, which was spread across the week, but then I would pay afterwards. So I then just had to activate my insurance, my disability insurance, which luckily I got uh, because I claimed it quite early on when my pay dropped and they refused [01:00:00] injury allowance.

Now people are having great difficulty, um, because obviously there's so many claimants. So I, I was able to access that and I actually took, um, my pension, my NHS pension, um, early, and I, so in November, 2024, I gave up work. So now I have my disability payouts and I have my pension, which is enhanced 'cause I'm only, I'm 49, so my pension isn't that great.

But what they do is if you, if you retire on injury grounds, they do enhance a little bit. So those two things, and I have a couple of benefits, so they together are sufficient. Okay. It's not a luxurious life, but I have enough. But in terms of the silver linings, oh, there've been so many. So, the amount of learning that I've had about this illness, but also about other illnesses that have been [01:01:00] neglected or gaslighted or psychologized or ignored, such as ME/CFS, fibromyalgia, POTS, MCAS, craniocervical instability, you know, vaccine injury, fluoroquinolone toxicity, a apologies if I'm missing any, any, I mean, I know there, there's lots of these illnesses, so no offense to any listeners.

It's just taught me to see patients with different lens and, you know, if I do manage to return to practice one day, and I don't know if that would happen, but it might do, then it, it's gonna be with a fresh set of eyes, it's going to be such a privilege to actually look at them and say, you know, I know exactly how you're feeling because I do.

Jill Brook: Wow.

Dr. Asad Khan: And I, I'd like to think that I was already quite empathetic before, but this is sort of next level now because you, you have walked in their shoes and that's a real honor and a real privilege. The other silver lining is that it taught me what's important in life. So I was never a materialistic person, like, you know, gadgets and cars and, you know, fancy house never really mattered much to [01:02:00] me.

But this has really reaffirmed that, that what really matters is your health. And if you lose your health, you will lose many other things.

Jill Brook: Mm-hmm.

Dr. Asad Khan: You lose a lot. But what happens is that you know who your people are and it's a real good filter. And you will find that there are some people whom you thought would be reliable, be loyal, they'll stick by you, and they are nowhere to be seen.

On the converse, there are some people whom you might not have given that much time or credit, but actually they're the ones who show up. I'm not saying everybody's like that, but that's been my experience. I've been surprised. And I'm really lucky that I have some some really good friends who, who are just there for me at the drop of a pin.

And I yes, whereas, you know, the family I created may not exist anymore, but I, I'm very lucky, I've got a a, an [01:03:00] amazing birth family, so siblings, parents who totally believed and supported me 100%. So you, you know who your people are. And I'm just so glad to have that clarity because I'm very judicious with my time now.

I, I will be polite to everyone, but you know, I will only spend my precious energy where I know that I'm being accepted for who I I'm, and it's not transactional. And I just feel like the opportunity I've had to do research and do advocacy, that's been phenomenal. And that's because I was really stubborn and I, I was just like, this, this is, this is totally getting the better of me.

Okay? And I know that, you know, it's, this kind of language is probably not appropriate. It's not a battle. But I just thought nobody ever explained this to me. I need to connect with all the right people, and I need to find out from them what they think.

And I built this network. I have built this network and actually in that [01:04:00] network, a lot of people call me the oil because I'm really good at connecting people. And so, and then I realized that actually I had a platform, I had a privilege, I had a position that I could use. So then I advocated on social media for people with these illnesses.

Actually got into quite a bit of trouble with the, the psychologizers. But you know, once you know what the truth is, once you've seen it, then you can't stop talking about it. I don't think I deserved all the kind of praise I've had, but people have said that, you know, I have provided them with hope.

And that's been really humbling to hear that if even one person has felt like they can hang on for a little bit more you know, that that's a privilege. So I do not think any of this would've happened without me having gone through what I've been through. So that's a silver lining. Would I do it all over again?

Probably not. Yeah. And this come at heavy cost. But yeah, [01:05:00] I, I have to be grateful for these things. And that is what keeps me going.

Jill Brook: Wow. Wow. You have so much grace. And I mean, I think this is kind of what you're saying is that somebody without your credentials and your connections and your history and your reputation for already being a pulmonologist, nobody would believe them

if it were just a regular patient off the street. And you being willing to talk about your experiences means so much to the people who are not believed. But then you even take it a few steps further and you are very vocal online, you're an advocate. We'll make sure to put all of your social media links in the show notes if that's okay with you.

But then, like you've said, bringing these people together and making this research happen. I'm really excited about the research that you are making happen and, um, we'll be excited to follow where that goes with the micro clotting and all of that. But you've just done so much for this community [01:06:00] and you have just paid the ultimate cost and you are, you are driving ahead to still do good work for the other patients who maybe don't have the voice or the clout or the credibility that you have.

And it's just so incredible. And thank you so, so much.

Dr. Asad Khan: I, I, I, I'm a bit embarrassed actually because I, I actually don't feel like I've, you know, I don't, don't think I've, I've done that. I think I, I've done what any decent human being in my position with my credentials could do, and I think it's really tragic that people aren't believed just because of not having a few letters after their name.

That should never be the case. We should always believe patients. But yes, if I can use my position on our platform for for the community, then I am more than happy to do that. I know not everybody likes speaking out, but and I actually [01:07:00] am a very private person normally, but I, I, I realized that this, I actually had a, I actually had a gift here that I could utilize for, for the benefit of myself and possibly to others. So, that's, that's what has kept me going. So in, in, in the end, it is a bit selfish, not selfish, but, you know, it's what gives me hope as well and gives me purpose.

Jill Brook: Oh, well, thank you. Thank you for everything. Listeners will put all of those links in the show notes.

And, um, Dr. Khan, thank you again. Maybe we can have you back when, um, when you have some of the results from your, um, findings with the South African group on micro clotting, and it has been such a pleasure to talk to you. Thank you.

Dr. Asad Khan: Well, Jill, it's been an absolute honor and a privilege and I'm so glad we were able to have this chat.

It's been a, a long time in the making, uh, a year and a half, but I'm glad we got to do it in the end. And yeah, [01:08:00] thanks to everybody who's listening and, uh, it's, it's a privilege to be part of the community.

Jill Brook: Awesome. Awesome. Okay, listeners, that's all for today. We'll be back soon with another episode, but until then, thank you for listening,

remember you're not alone, and please join us again soon.