#41: Why Is This So Difficult? February 2025 Long COVID Rundown

What do you do when you just want a break from being sick? In this month's episode of The Rundown, Dr Zeest Khan shares her ongoing journey with long COVID, discussing the frustrations and challenges she faces in recovery. She reflects on the medical treatments she has undergone, the importance of reliable information, and the emotional toll of navigating the complexities of this condition. 

Transcript

Zeest Khan (00:51)
Hello and welcome back to Long COVID MD. I'm Dr. Zeest Khan It is the February 2025 rundown where I sit with you every month and update you on my life as a patient with long COVID, what my current struggles are, what my wins have been recently. And today I'm going to vent a little bit. And so if you're in the mood for that, keep listening. I am...

I have been pretty frustrated with the medical establishment, for lack of a better word, with our lack of medical advances and the scientific instability that's happening in the US right now as well. But even more than that, I'm just a little annoyed with my recovery and the pace of it. So that's what we're gonna talk about today.

As a reminder, I have made a tremendous amount of recovery. I was absolutely bed bound in 2021. That lasted for almost a full year. I have been hit especially hard by orthostatic intolerance. It was hard for me to stand up without passing out or almost passing out.

I have had really significant cognitive impairments. It has been hard for me to think straight, to understand what people are saying, to tolerate sunlight. I've also had pain. I have difficulty seeing and reading, trouble focusing on a page and comprehending.

I had really bad respiratory symptoms. had severe shortness of breath and a tremendously worsened allergy symptoms that were not easy to manage. And the most dramatic was my asthma that prevented me from even lying down flat.

So also had some heart issues. So today I am able to stay upright for most of the day. I have days where I'm not in bed before bedtime or at least stay up until a very early bedtime and lie down. I can function in my house pretty well. I don't go out of my house too much. I have

limited ability to drive and I am still struggling with some cognitive tasks. Although as you can tell by the fact that I am recording a podcast I am able to do a whole lot with my brain. not enough to work consistently for hours at a time.

And so I appreciate my recovery up until now, and I recognize that I still have a ways to go. What I am frustrated with currently is that when I was literally on the floor, unable to stand up,

When I was trying to sleep in a chair because I had too much shortness of breath to lie flat, I had a little bit more hope that I would make a full recovery than I do right now. And the treatments that I received for my severe symptoms made a much bigger

difference. Like I'm putting my hands out as like a measurement. There was a bigger change or like a broader differential between my symptoms before I started a treatment and after. So I would go to not being able to breathe to being able to breathe. That's pretty dramatic. The treatments that I am trying now however have a smaller differential. They don't make as much of an impact.

they are more labor intensive, they are more time consuming, they require a lot more consistency to get payoff. And if anything throws me off of my routine,

I don't start from scratch, but it just adds to the time it's gonna take for me to see payoff and it might shorten the payoff altogether.

The problem with these current treatments and therapies that rely on a lot of lifestyle modifications is that life happens and unexpected things happen. And I want to spend energy making sure my child feels supported after a particularly rough day of school.

they keep coming home sick with some bug or another that they've caught at school. that's for another episode, but life takes time, life takes effort. And I am not living in a silo. I want to exert my effort, expend my energy in my family and in...

activities that bring me joy. And so the treatments that are available to me right now and that I'm working on right now once again are limited.

When I was severely sick and could not breathe well, medications made a big impact. They made a big difference. Now that I can breathe a little bit better, and I continue to take these medications, my focus has now shifted to avoiding triggers for my asthma, making sure that my sleep

is optimized. That my food and nutrition is optimized. Lifestyle modifications have become even more important in this phase of my recovery. The problem is life happens and life and the unexpected things that occur in life when you're living in a community.

make it hard to keep those lifestyle modifications consistent. And it's very frustrating then that I can only try as hard as I can and I think the payoff is gonna be limited. That is frustrating because as I've said, I still have a long way to go.

I wish there were more medications that were more reliably in my system and that I could take more reliably that could get me across the finish line. And right now the appointments that I'm having with my medical doctors is...

They are limited, the options are limited now. And that is, I recognize both a good thing and a bad thing. It reflects the fact that I have recovered significantly. However, it is not enough. And I think perhaps in medicine, we have this additional bias that I'm recognizing, which is, know, patients should be happy with the...

improvement that they have so far. But it's not enough for me and I need to admit that and I need someone to help me get better. I need more.

Which brings me to my next point. How do you find the people to help you get better? How do you as a patient stay quote unquote up to date on the latest? It's really hard because there is so much click bait out there in the discourse around long COVID and we have to fact check

or dig a little deeper beyond the headlines or the posts that we read or the spins that our online sources share. It is impossible to expect every patient to be able to effectively read a science article and deduce the conclusions from it. So we have to rely on sources

who can do some of that translating for us? What I am learning is that these sort of educational sources or like people online who have built platforms on scientific education, public health discourse, and so on, their goal has been to summarize the information that comes out and

educate us on it in terms that we can understand. What I am seeing, however, is that it is really hard to unabashedly trust any given source. And we have to do fact checking and take everything that everyone says with a grain of salt. These last couple of weeks, I saw like this trolling type of conversation between a long COVID researcher

and a public health expert, both of whom have large social media platforms and have a lot of attention on them. And the thing was they were both kind of being jerks and they were both saying half truths and they were both making broad generalizations.

it reminded me that we have to be really careful about one, not falling prey to like celebrities or hero worshiping, but also not immediately jumping to canceling people. I think this just reflects all of our, you know, human tendencies that

something coming out of your mouth is gonna be a statement that other people agree with and some opinions you have others don't share. I can appreciate that. At the same time, it's exhausting. It's really exhausting as a patient to remain vigilant even about what should be taken as boring facts.

Because this is an evolving field, We need people to be our medical translators,

But people are gonna make mistakes and also these platforms are, you know, income drivers for people. And so they're following the models of communication that lead to improved engagement and virality. And there's nothing wrong with that specifically or even theoretically, but it makes a big impact.

on us if we're taking everything they say without a grain of salt and not recognizing that these medical educators live within a context of needing popularity and celebrity.

There have been a few people that I have seen consistently speak clearly and carefully. Those include Akiko Iwasaki, Ziad Ali, and Michael Peluso. What I see in their communications is a sort of distance from emotion.

which can sound dispassionate and boring, but it is more factual and to me more reliable. And that to me is actually really comforting because that's what I have learned is so important in communicating medical science. We have to couch what we say within the appropriate limitations and be very specific about what we're talking about.

who we're talking about and what outcome we're talking about. And so those three sources, it's not surprising that they are research scientists.

So anyway, I don't know what more to say about that, except I'm like really tired of having to do three extra steps of work before I can even understand like a news item. And this is a greater issue with not just scientific news or news around long COVID specifically, but also in global news and headlines. We are in this click baity type of culture.

and it is not helpful to me. If anything, it is better that I don't read that headline at all or am not aware of this latest breaking research study because the amount of digging through interpretations and misinterpretations is labor intensive.

another example is Akiko Iwasaki recently published a study that suggested a mechanism for long COVID symptoms triggered by the mRNA COVID vaccine. The study was very specific and not surprisingly, there was a lot of extrapolation on it.

and people making claims based on the study that, for instance, most long COVID is caused by vaccine injury, which is not the case at all. And I really commend Dr. Iwasaki for replying to some bigger platforms who were misinterpreting her work.

it's another reminder to me to like stay in my little world and be hyper focused on my specific symptoms. And if I'm doing any research to research the things that are troubling me, I'm trying to engage and keep up with what's going on in the long COVID space because I think it might be helpful to communicate to you, but I'm realizing it's

harder than I anticipated. I'll also note that when I was very, very ill and couldn't understand much, like my brain was really fried, I started following people on Twitter who seemed to know what they were talking about. I have bookmarked.

posts in which the writers claim to explain mechanisms of illness and to explain what research studies mean. I have gone back to those bookmarks and those platforms now that I have more clarity, more cognitive clarity and

quickly realized this is word salad, this is scientific word salad, this person does not know what they're talking about. I must have really, my brain must have really been fried if this made sense to me. And that also speaks to our vulnerability. We, many of us, or I'll just speak for myself, we're not always thinking clearly.

We have limitations in our education. We have limitations in our experience interpreting science. And there is a sometimes intentional lack of transparency in the sources online. People who are posting don't always tell you exactly who they are or how they're qualified to speak on a topic, but they speak very confidently. So this is an existing system.

a symptom and pattern in our culture that predates me getting ill, but I am noticing it as a real time sink for me right now. And I'm really frustrated. I'm frustrated that I have to be so vigilant and it's not easier for me to get boring information about facts. We still do not have clear established definitions for long COVID.

for long COVID subtypes, for starting treatment, what treatment strategies might be available, we don't have that yet. And just as I was talking about medical sources or like these public facing science platforms online, I'm seeing similarities among providers too. So.

I've gotten the opportunity to meet a lot more people who take care of patients with long COVID, ME, CFS, and other complex illnesses that are hard to understand or give a name to. And I'm seeing a bit of the same thing. Sometimes I hear a clinician speaking in a way about...

disease pathology that I find innovative and insightful and admirable. And I have heard the same clinician talk bonkers about the way they're treating a patient and suggesting treatment options that I think are sometimes unsafe. And so,

it adds more to the vigilance. It adds more to like, who should I trust? And if that is troubling for me to tease out, I can only imagine how much harder it is for someone who doesn't have a medical background. I was a doctor in private practice for 10 years before I got sick. And so I bring all of that with me. I mean, that doesn't even count my medical training.

So who do we trust? Who do I trust? Who can help me? And that is the theme of my month. And maybe since the beginning of this year, this process requires so much vigilance and so much cognitive work and energy in maintaining like certain lifestyles that support my health that I just wanna break.

I wanna just not be sick for a little bit so that I can do one of the other many other important roles that I have in my life. I wanna take a break from being sick so I can think more about the educational needs of my kids, the emotional needs of my kids, to think about a vacation, to think about date night.

to think about how I can make an impact in this world in a positive way.

I wanna take a break from being sick. That's what I feel right now. And the way it's coming out or manifesting is that I feel kind of lazy the last few weeks. I feel a different type of tired, where I'm like sick of it tired. I'm tired of it it's not surprising.

because a lot of life has happened in my little home recently and I've needed to be more than my identity as a patient.

And that's gonna continue. And I feel grateful that I have a life outside of my bedroom now. But it means that my recovery, maybe it means that my recovery is gonna be slow going and that the impact that any given treatment has is also gonna be limited.

especially when the treatments rely on lifestyle modification and behavior modification. I am not that guy who, that multimillionaire guy whose only focus is living forever. And I don't want that life.

Yeah, I'm just a little tired of it right now and I bet you are too or you have been there.

I'm looking through my notes here on what else I wanted to talk about in this 2025 rundown. But the main one is what I wrote down here, which is lack of nuance. I've been thinking a lot about headlines and clickbait and a lack of clarity, a lack of transparency, and all of these people in the internets who

are vying for my attention, for their own gain.

And even if their intentions are sincere. So I feel like just even talking about all of this with you has been therapeutic in some way. I'd like to be action oriented or goal oriented. But I think I just need to vent a little bit. I'm gonna reflect on ways to maintain my motivation.

or probably more importantly and more realistically, how do I rest in this way, in a way that is nourishing, in a way that refuels me, in a way that builds my, rebuilds my motivation? Because right now I'm tired of it and I can't keep going to

medical appointments that require so much energy and don't have as much impact as they as I wish they could without it getting to the point that the effort defeats or offsets any of the potential benefits.

Tell me how you're doing. You can email me at longcovidmd at gmail.com. You can sign up for my newsletter at longcovidmd.substack.com. I email a summary of every podcast episode in case you are someone who likes to read or understands better by reading or wants to share some of the ideas that I've talked about in each podcast with someone else through email.

It's really easy to forward the essays or the pieces on there. So check that out. Let me know how you're doing and I hope you're doing okay. I'll talk to you again soon. Bye for now.