How do you spot Long COVID misinformation?

What do you do when your medical providers don’t know about Long COVID and internet personalities promise you they have the cure?

In this episode, Miles Griffis and Betsy Ladyzhets talk to Long COVID physician, patient and advocate Zeest Khan about her Long COVID journey, how she looks at new research and off-label treatments as a physician, and how to spot misinformation and pseudoscience online.

Subscribe to Still Here wherever you get your podcasts, and leave us a review letting us know what you think of the show. This episode was produced in collaboration with Long COVID, MD.

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Jump to a specific part of the transcript:

Intro
Interview with Dr. Zeest Khan
Research updates
Outro

Intro

[00:00:00]

Melanie Marich: Welcome to Still Here, a Long COVID news and commentary podcast from The Sick Times.

Miles Griffis: I’m Miles Griffis.

Betsy Ladyzhets: And I’m Betsy Ladyzhets. We’re the co-founders of The Sick Times.

Melanie Marich: And I’m Melanie Marich, the podcast producer for Still Here.

Miles Griffis: Many institutions are ignoring the ongoing COVID-19 pandemic and trying to erase [00:00:30] the Long COVID crisis.

Betsy Ladyzhets: But here at The Sick Times, we’re bringing you the latest news and commentary that matters to the Long COVID community.

Miles Griffis: Without pandemic denial, minimizing, or gaslighting.

Melanie Marich: Scientists don’t want you to know what I’m about to tell you. How many videos have you seen online that start just like that before going into the thing that’s gonna cure everything? We are all susceptible to clickbaity content that shares medical news, new [00:01:00] treatments, research findings, the works.

Obviously, not everything is clickbait, and I know so many of us have found a lot of community, a lot of good information, and a lot of really helpful paths forward as we or loved ones experience chronic illness. But the truth is, we’re not all doctors or researchers or experts, and a lot of us may not have the tools or the knowledge to read in-depth scientific research or clinical trial results, so we do what we can with what we’ve got.

Of course, we at The Sick Times always strive to be [00:01:30] a reliable source of vetted and thoroughly reported Long COVID and chronic illness information. But we also wanna empower you to take in complicated information and come to your own conclusions, or to spot the red flags and disinformation when it comes up on your feeds.

Today’s guest is here to help us do just that. Dr. Zeest Khan is an expert on multiple fronts. She’s a physician who has spent her career working through complex medical decisions. She’s also a person with Long COVID, and has sat on the patient side of the table to get care for herself. [00:02:00] These days, she’s also a writer and an advocate, and you may know her from her Substack and her podcast, Long COVID MD, where she shares her wisdom to help other people with Long COVID make the most informed decisions they can.

Miles and Betsy spoke with Dr. Khan about how to evaluate Long COVID research, trials, and potential treatments, plus how to spot medical misinformation and pseudoscience online. Dr. Khan will also be sharing this episode on her podcast, so if you’re listening from Long COVID MD, hello. We hope you enjoy this collaboration, and if you [00:02:30] don’t already, we hope you’ll give Still Here and The Sick Times a follow.

All right, here’s that conversation.

Interview with Dr. Zeest Khan

Miles Griffis: Dr. Khan, welcome to Still Here. We are thrilled to have you. For those who are unfamiliar with your work, can you tell us a little bit about who you are, uh, where you’re calling in from, and how you came to your line of work?

Zeest Khan: Sure. I am- Thank you for having me. I’m so happy to get to meet both of you and talk with you today.

I’m Zeest Khan. I’m a physician in Northern California. I- my medical specialty [00:03:00] is kind of a, a long name. It’s adult cardiothoracic anesthesiology, so I manage, um, people undergoing open heart and lung surgery. I do a lot of work in trauma, in the ICU, um, and so it was a pretty intense field. Uh, in 2020, we were hit, my community was hit quite hard with COVID, and I got sick with something I thought was a sinus infection or a cold, um, in the middle of [00:03:30] 2020, and my health just deteriorated.

Um, I didn’t really get better, and by 2021, I was unable to walk down a hall. I was unable to think straight. I left practice and thought I just needed a little time off, and I was later diagnosed with Long COVID from a presumed infection, um- Probably got it working in patient care. And I spent the better part of 2021 and [00:04:00] 2022 in bed trying to figure out what was going o- wrong with my body and how to get it better.

Um, and as my health improved, I started reaching out to see who else was dealing with this. Um, and I started a podcast in 2023 called Long COVID MD. Uh, as my brain has turned on a little bit more, I’ve started writing, and so I’m now pretty much based on Substack under the same name. I write about Long COVID, about the life [00:04:30] experience, about how to utilize healthcare, uh, the best way so that we can leverage the resources we have to get answers that we need.

So that’s my life now.

Betsy Ladyzhets: Thank you. I mean, I think a lot of people really appreciate all of your work and the way that you come at this, both from the medical point of view and from your own personal experience. Um, so from both of those, you know, how would you describe the state of care for people who have Long COVID, and how has it evolved since 2020?

Zeest Khan: Hmm. [00:05:00] Excellent question A lot of question marks right now. I think we have a real problem with medical professionals, my physician colleagues, not being able to recognize the signs of Long COVID when their patients walk in complaining with that, having difficulty diagnosing it, treating it. And given all of that, I think it’s really hard to say [00:05:30] how well people are getting care.

But I think from so many anecdotes that you guys, uh, know and that I, um, have heard as well, we have a really long way to go. Um, there’s multiple reasons that patients are not getting adequate care for Long COVID that we could go into, but right now I think it’s really safe to say that medicine has a lot of work to do to catch up with the need.

Miles Griffis: This is something we’ve [00:06:00] covered just sort of over the years as time has gone on, um, but it’s still sort of this big question of, why do you think it’s taking, you know, colleagues, uh, other physicians to, I guess like, catch up on the research? You know, like I write these research updates every week. I am, you know, as you are, like, checking this out, you know, almost daily, seeing what new studies are coming out.

Why do you think there’s sort of a resistance to, to this research that’s coming out and it’s not being [00:06:30] translated to, to doctors across, across the country?

Zeest Khan: I don’t know that there is resistance to the research. I think more than that, there is a lack of a medical home for Long COVID where this research lands.

So as you guys have probably come to know, and everyone listening with this condition has come to know, our healthcare system is very broad. We know [00:07:00] a lot about the human body, so much so that one person can’t know all of it. And so we have fragmented our healthcare into organ systems, right? So you have neurologists, cardiologists, pulmonologists, nephrologists, and you have primary care doctors, family medicine, internal medicine, who try to make sure that preventive care is, you know, all preventive care measures are hit.

And if there is a [00:07:30] specific issue regarding an organ system, they don’t necessarily know exactly what to do about that problem, but they are confident in where to send the patient for help Where do doctors send patients for help when they come in with Long COVID or even ME/CFS? Neurology doesn’t have a clear home for this.

Rheumatology doesn’t have a clear home for this. Infectious [00:08:00] disease isn’t even a space that’s taken this. Um, allergy and immunology hasn’t carved out a space for this. So more than hesitancy or resistance, doctors don’t know where to put this, and there isn’t a group that has influence on most medical fields that is catching that research and keeping track of it and then distributing it.

Betsy Ladyzhets: Makes sense. Yeah. And [00:08:30] I think this kind of issue also shows up in the wide range of treatments that people are trying for Long COVID. So as we all know, there are currently no FDA-approved treatments for this disease, and so a lot of people try different things, uh, in using what’s called off-label.

Um, so I’m wondering if you could talk a little bit about how that works and how someone can evaluate the pros and cons of a potential treatment that they might wanna try off label.

Zeest Khan: Such a great question, and it’s actually the [00:09:00] center of my work, or, like, the center of my intention with my work, at least.

I’m trying my best to, to make it into a reality. So off-label medications have been used for a very, very long time. Many, many medications are used, and treatments are used off label routinely. The reason off-label use is reasonable once it’s been established is because the FDA has already deemed this medication safe.

We have a [00:09:30] history and an understanding of this drug, whatever it might be. It was initially indicated for one purpose, but as that safety profile has, has grown, as people are more experienced with it, it’s been applied to different conditions, and then that process starts over again. There isn’t necessarily a need for the FDA to come back and say, “There’s also, uh, an indication for, for this medication for another condition,” especially if the [00:10:00] medication is not under patent anymore.

So all that being said, there are a lot of medications that physicians or care providers can offer their patients, and a lot of Long COVID patients are playing around with different drugs and different treatments. So how do you do that? The way I see people doing this most frequently is they read a post on social media from someone who said, “This changed my life.

I am [00:10:30] completely recovered after starting whichever medication.” Someone will start a, start a med or get interested in a medication because of that. What is more useful, and what I encourage, is to understand a little bit of the mechanism of that drug What it has helped with that we already know, and if you have a similar problem.

Do you have a [00:11:00] problem that this treatment could help with? And that requires, when you have such a complex interconnected set of symptoms, you have to get really clear about what symptoms do I have, and can I categorize them in some way? You can hear that’s a lot of work for one person to do, and patients end up doing a lot of this work when for other conditions their doctor has already done it for them.

[00:11:30] So, um, all that being said, I think the key is when you start a treatment, be very clear about what it does, what it could do for you, and if it’s relevant to you.

Miles Griffis: As you were talking sort of a little bit about the social media posts that we see that someone might be drawn to for a specific treatment or the communication on a certain study, it’s clear you’re keeping a, you know, a close eye on research.

Um, and you spoke with our reporter Simon Spichak recently [00:12:00] about evaluating clinical trial results or study results for Long COVID. We put together sort of an explainer, Simon did, about, you know, what to look for, the trouble sort of in assessing and how science can be communicated on Long COVID. What are some of the steps that you take in evaluating your research and studies?

What are, you know, what’s sort of your process in reading a paper and determining if it is good quality evidence?

Zeest Khan: Yeah. That’s a great question. [00:12:30] I’d be happy to explain my little process because I do have a little process. So again, the point of my goal in reading a clinical trial is primarily for myself first and then to tr- to translate it.

But say I’m just taking, looking at a clinical trial to see if this is something that I should start. My goal is to understand if this treatment could help me, if this treatment is [00:13:00] relevant to what I’m going through, and the w- that’s my big overarching goal. So what I do is I’ll read the headline or the title just to get an idea of which drug, it’s usually a drug, um, has been studied.

But my, really my first step is to go to the author. Um, so most studies online have a little bit of the author information immediately accessible, but there’s a button that usually says, “Expand [00:13:30] Author Info.” So I expand author info, and that’s gonna tell me who was involved in the study, what their training is, and which field they are in.

So this could be a clinical medical field, this could be chemistry, this could be psychology. It tells me what the author’s perspective is, what they can actually measure, and what their expertise [00:14:00] is. So that’s really important information. It also tells you where the study was done, and you can kinda interpret that, um, however you want.

You know, we love big institutions that have been around for a really long time and have been known to put out reliable research, but there’s plenty of places doing good research who are not as established or as famous, I guess. After the author, I go to [00:14:30] the, to the title. You guys are really good at writing headlines.

Scientists are not so much. So the headline will tell me the tone of the paper. If it is a catchy headline, my spidey sense kinda goes up and I feel like that’s a little bit of a red flag. If it is droning, kind of tedious and long, like, okay, this is kind of serio- more serious research. Then I go to the abstract, and I’m trying to find a couple of things.

[00:15:00] What were the type of, um, patients they studied? What were they measuring? And what do they think they found? The abstract is kind of like the back of a book cover. It gives a little summary of what the research article is. And the abstract, instead of being data only, also has the perspective of the author.[00:15:30]

What do they, what do they think they found? Why is that relevant to them? So there’s a lot of information there now. You know where the research is from, what field it’s from, what type of patients were studied, what question the authors asked, what intervention they put in, and what happened And reading that abstract can tell you whether or not it’s [00:16:00] useful to continue even reading the rest of the paper or bringing that paper to someone who can help you, um, interpret it.

Is it relevant to me? Is– did this measure something that was impressive and could alter my clinical decision-making? And here’s where you have to decide why you’re interested in getting more information. I am very clear about reading research that’s going [00:16:30] to impact my clinical decision-making. Can I take an action based on this paper?

That’s usually my goal. Another goal is out of curiosity. What’s going on in the research space? What’s interesting here? But you have to be really careful that you don’t slip into doom scrolling of research, and I think a lot of people do that. They think that the more they [00:17:00] know, the more they see, the better off they’ll be.

And we know from the news, we know from scrolling social media, more is not always better. More can be burdensome.

Betsy Ladyzhets: So I guess, you know, if somebody has, you know, taken this advice, read an abstract, and identified that a particular paper or results from a particular trial, uh, might be relevant to them, what would you say is kind of the next step?

Or like, how would you recommend, uh, approaching this kind of thing with a [00:17:30] healthcare provider? I think sometimes people can feel really intimidated in those kinds of, uh, appointments or conversations or like not feel like they know how to bring up, you know, medical literature, uh, when it’s maybe a really quick appointment or it’s like just a MyChart message or, or yeah, just like feeling like you, you, you don’t know if the healthcare provider is just going to dismiss you for kind of asking these kinds of questions.

So how, how would you recommend doing that?

Zeest Khan: Yeah, another great question. So I would say, first of [00:18:00] all, if you wanna bring– get the input of your care provider about a research study, it probably deserves at least a 15-minute face-to-face, whether it’s in person or online, more than, um, an email. But, um, it’s really hard for me to say what someone should do when they wanna talk to their doctor in a way that they’re gonna be believed because it’s not a fair request to [00:18:30] make. It’s really important, if you have Long COVID, to do everything you can to at least establish care with a primary care doctor that you have a good relationship with.

And I know that’s not always possible for everyone, but because there’s so many steps we want to take, a lot of us have, play like a chess game and, and try to plan four or five steps ahead. You’re gonna get a huge return on your [00:19:00] investment of the time you take establishing care with a, with a provider, primary provider who’s gonna be a good partner.

When you have a good partner who’s open to, opening to listen to you, it makes it much easier to bring anything to them, ’cause you wanna collaborate with them. And I feel very sad that so many people have such a bad experience with their doctors. It’s a real problem. But aside from that, I think what [00:19:30] you can do is kinda similar to what I described:

I have this symptom. And this research suggests that this thing could help this symptom. What do you think about that? Your doctor is hopefully gonna listen to you, consider it, and what they’re gonna think through is, first of all, do you have any contraindications? Is this a safe treatment for you, first of all?

[00:20:00] And then weigh the risks and benefits of it. And that’s where there should be some collaboration to understand, is this something whose benefits outweigh the risks? Are you ready to start a treatment that might kinda be, might hurt you in the short term, might be uncomfortable, might cause discomfort, might have some side effects you have to manage?

All of those are the kind of questions that you have to think through also [00:20:30] before you start a treatment. My hope is that everyone has a good relationship with at least one doctor on their team that they feel comfortable bringing, um, research to. I would also just recommend, like, focusing on some research that impacts your clinical action steps.

Miles Griffis: That’s super helpful. I think in my journey with Long COVID, it’s also, there are so many different things that we’ve been told might help [00:21:00] us or we see promising research on, um, and it’s hard to make, it’s hard to determine what to try and if you should stop something else or um, try one thing at a time.

Is there anything helpful to, I guess, sort of break down how people should go about a treatment plan, whether it’s trying one thing, um, or scaling back, um, since there are so many options, um, but, and nothing has, you know, [00:21:30] the sort of research that we want behind it to definitively say it’ll help or not?

Zeest Khan: Yeah, super important to think through. And when I work with people one-on-one, I, I spend time on this because there, it really de- the answer really depends on what do you feel like is the right method, and do you have the bandwidth emotionally, the resources, whether that’s, you know, support at home, [00:22:00] money, healthcare access- That helps clarify which approach is better.

I think you’re asking, do I do things sequentially? Is it better to get treatment sequentially or to get a bunch at once? And different, the answer’s gonna vary depend on, depending on what your values are and what you feel prepared for. Early on when I was sick, like, I’m very much step-by-step, kind of worst thing at a time.

You could easily say [00:22:30] my medical expertise is in crisis management, where multiple bad, bad things are happening at one time, and I’m usually one person with two hands and one brain who can probably do one thing at a time, maybe delegate the rest. But I really have to prioritize, and that’s hard to do, but I think it’s worthwhile.

It certainly has helped me. My recovery was slow, but it has been very steady, and I haven’t slipped [00:23:00] back. But for me, it was my decision to do things kind of sequentially, and I saw people, we all have Long COVID friends by now. Um, my new Long COVID friends were doing a bunch at once, and I kind of felt FOMO.

I was like, “Well, am I doing this right?” And I always came back to, that might be right for them, but this is right for me. This is sustainable for me, and this is an approach that’s gonna not only [00:23:30] hopefully help me recover my health, but also prevent my comp- life from completely falling apart. So it’s a difficult thing, question to answer, um, uh, as a blanket, but it is a very important question to ask yourself: What do I wanna, how do I wanna do this?

And whatever your answer is, I hope you can prepare to do that, um, in a way that’s sustainable.

Betsy Ladyzhets: That’s, uh, that’s really helpful. I wonder [00:24:00] if there are other questions that people should be asking themselves, like, as they start to go through this process, like other ways to inform maybe how one approaches trying different off-label medications or pursuing, like, looking for different specialists or other things like that.

Zeest Khan: My advice, you know, I don’t always like say that I give advice, but my advice here I will say, um, is [00:24:30] to spend time sifting through what is most painful for you right now. That’s what I had to do in the OR. What is my immediate most important problem out of all these bad problems? What needs attention first?

And for a lot of us, that process is hard, and that answer can be hard, because sometimes it’s sleep. Sometimes it’s an [00:25:00] upset GI system Sometimes it is grief. Sometimes it is anxiety. And we don’t like to bring those things up because we’ve been torn down, and gaslit, and dismissed because of them.

Sometimes it’s, my biggest problem right now is my housing. My biggest problem right now is my relationship with the people I live with. It’s my personal safety. Like, you, [00:25:30] this, that’s, this is what I keep coming back to and feeling so, like my justice, um, button, uh, like my injustice button is pushed. I don’t know another way to say it.

It’s just so unfair that people in this, who are so debilitated, who need the most help, are just being asked to do so much by themselves. And we take for granted. Like, and I don’t think doctors in the office [00:26:00] have insight into what effort it takes just to get to that doctor’s office, much less all of the stuff that has, they’re asking the patient to do behind the scenes.

So I don’t know if I answered your question, but like, I just think it, you know, it is so hard, but it is really helpful to narrow your focus. When this is a, such a big, complex problem, decide on what you wanna focus on first, and trust [00:26:30] that that’s gonna help.

Miles Griffis: No, that’s very helpful. I think it, it’s sort of that, like, triaging care.

I mean, it’s like triaging your symptoms, what’s affecting them, whether it’s in your environment or, you know, the actual disease. It’s, you ha- kind of have to pick and choose what is the most important because Long COVID is so, can be so overwhelming. I want to ask you about one of your past, uh, podcast episodes, which was about, um, spotting Long COVID pseudoscience, um, that I [00:27:00] really enjoyed.

And I was wondering, um, you know, we see so much on social media and, you know, we’ve talked a little bit now about research red flags and things like this. Um, and I thought you did such a great job sort of breaking down, I guess, sort of like the red flags in science communication on Long COVID. Um, we see this in the media, we see this in, on social media.

It’s kind of all over. But what is sort of one of the biggest red flags, uh, you see when Long COVID is communicated, um, [00:27:30] whether it’s on social media or in the press, that, that doesn’t get it right?

Zeest Khan: It’s Long COVID, it’s about menopause, it’s about vaccines, it’s about so much. Medical disinformation follows a pattern.

And you know, I said at the top of the show that I, like, I started the podcast ’cause I wanted to reach out and see who else was there, and that’s true. But another huge motivation was I was pissed off because I had just spent a bunch of money [00:28:00] on something that was completely useless, like a treatment that was promised to be really great, and I was like, even I got, you know, grifted.

Um, and so I was mad, and I didn’t want other people to make the same mistake. So what I see online, and what others, you know, see, what misinformation follows, is this pattern of using all or none language, using really dramatic language, and not including [00:28:30] nuance. Science always has nuance and unknown variables.

Medicine especially has nuance and unknown variables. So if someone’s telling you, “This is the absolute thing, and I have the, I know the, the problem, and I know the answer,” that’s a red flag. The other is they are, they might… I always look at who the author is. Like I said, uh, [00:29:00] when looking at research, the author, the source is really important.

People attach doctor to their name online a lot, and I have found sometimes it’s really, it’s kinda hidden what kind of doctor they are on their social media profile. Like, sometimes you just, I have to do a full Google search separate from their website to find out who they are. People can have a lot of education, but that doesn’t [00:29:30] necessarily mean they have education in a specific field that is pertinent to the claims that they are making.

So someone who is acting like an expert or speaking as an expert who may not be. So that’s, um, another thing.

Betsy Ladyzhets: Yeah, I think that point about expertise is so important also. I feel like we notice this sometimes in media articles, where sometimes maybe a journalist is, like, working on a quick deadline, and they just, like, need to find somebody to comment on a study, but doesn’t [00:30:00] necessarily have the expertise to really evaluate whether the study would, say, be helpful for people with Long COVID.

Zeest Khan: Yeah, I’ve seen people with a lot, you know, an advanced degree speaking with authority, but it’s not pertinent to what they’re talking about. And especially when it comes to Long COVID, what I see time and again that sets off a red, an alarm for me is when someone [00:30:30] is speaking so confidently about knowing what the problem is.

“Long COVID is caused by X, Y, Z.” Like, bro, you don’t know. If we knew, we would know. Everyone would know. The other thing that comes to mind is this concept of, like, a conspiratorial thinking. They don’t want you to know. I saw this hilarious social media clip of someone saying- “You know, when I hear someone saying scientists don’t want you to [00:31:00] know, if you have ever met a scientist, you will know they always want you to know.”

You want them to shut up, they want you to know. If we knew, we would know. I don’t think there is a big conspiracy hiding the reason, uh, or the cause of Long COVID. I think it’s unfortunately still gonna take a lot, a lot of time to figure out. Another key word that is making me cringe is root cause. We treat the root cause.

If we don’t know the root [00:31:30] cause, you can’t treat the root cause. So what are you really saying? And then there is a lot of pseudoscience, science-adjacent language being used. My current, you know, one that comes to mind is, uh, brain retraining, neuroplasticity. Brain retraining is not a medical term.

Neuroplasticity is not a method, it is a characteristic of our body. It is the basis of stroke [00:32:00] rehab, it is the basis of learning, it is the basis of habit change. It is not a method. And so it is really easy when you are ill, when you have cognitive damage, I save tweets that I thought were really interesting in 2021, then I came back to it when my brain was less fried and reread it.

I was like, “Oh, this is garbage.” I didn’t know what I was reading, and I thought it was really great. [00:32:30] And I am a very, very highly trained physician, and I got confused and misled. It happens. Um, so, you know, those are some of the, the main, um, things to look out for. And just, it doesn’t mean you can’t believe them, it doesn’t mean it’s not necessarily true, but it’s something that should make you ask a few times, is this reliable information?

Betsy Ladyzhets: Thank you. I think those are so helpful to point out. And yeah, with something [00:33:00] like root cause, like there probably are going to be a bunch of different causes for different people. Like Long COVID is so complicated and multifaceted- Yeah … that, yeah, it feels really hard to-

Zeest Khan: Yeah …

Betsy Ladyzhets: like attribute to one thing.

Yeah, so I know we wanted to be mindful of your time, uh, but is there anything else we didn’t ask that you would want like listeners who are still here to know? Last couple minutes.

Zeest Khan: I guess I would want listeners to remain hopeful. I’ve seen so much suffering in my life directly [00:33:30] and with my patients, that I can’t help but keep going because I feel like I’m just part of this — without getting too woo-woo, like, this universal force, uh, and experience that people have suffered.

And it is — This is… I say this because this is such an isolating and lonely illness that it has really, really helped me remember that [00:34:00] other people are going through what they are going through too. You really are not alone, even though I know you might be tremendously lonely.

Miles Griffis: That’s so well said. Thank you so much for joining us today.

We are so grateful to have you on Still Here.

Zeest Khan: I’m so happy I finally got to meet you guys and talk. Thanks for having me.

Melanie Marich: That was Dr. Zeest Khan, AKA Long COVID MD. You can check out her work on her site, Long COVID MD, where you can also find her Substack and her podcast. As [00:34:30] always, we’ll link to all of this in our episode description.

Now, here’s this week’s research updates.

Research updates

Miles Griffis: A new study in Nature Communications confirmed skeletal muscle abnormalities in people with Long COVID and ME. The study compared various exercise tests and biopsies of people with Long COVID and ME to the results from people who underwent 60 days of strict bed rest, as well as results from controls.

In a press release, lead researcher Rob Wüst said, quote, “There are [00:35:00] indications of abnormalities in muscle fibers, energy production, and oxygen supply,” unquote. People with Long COVID and ME, quote, “should not be treated as if they have merely lost their fitness. Future studies and diagnostics must take this into account,” he said.

Betsy Ladyzhets: A large genetic study published in Nature Medicine found evidence that fibromyalgia is a central nervous system disorder. Researchers analyzed genetic data from about 2.6 million people and compared around 54,000 people with [00:35:30] fibromyalgia to a bigger group of controls. They found 26 loci for the disease, or specific locations on a chromosome where variations on DNA are linked to increased chances of disease development.

While fibromyalgia has a higher prevalence in women, the researchers did not find a sex difference in the genetic architecture. The researchers concluded, quote, “These findings establish a firm biological basis for a long-debated condition.” The study’s biggest limiting factor was its primarily European cohort, which could limit how well the findings apply to [00:36:00] people of other ethnicities.

Miles Griffis: Black people in the U.S. are less likely to be diagnosed with Long COVID compared to white people. That’s according to a new health study in Health Affairs. Researchers looked at the electronic health records of 2.4 million Americans diagnosed with acute COVID-19 between 2022 and early 2023, and used the ICD-10-CM code for Long COVID as the primary outcome.

Researchers found less than 1% of each ethnicity group in the study had a Long COVID diagnosis, [00:36:30] and stated that their findings were likely an underestimate of the true magnitude of diagnostic bias.

Outro

Betsy Ladyzhets: That’s all for this week’s episode.

Miles Griffis: In the meantime, we’ll continue reporting the information that you need.

Betsy Ladyzhets: Solidarity with everyone still here.

Melanie Marich: This podcast and The Sick Times are supported by you. You can help us keep this work going by donating on our website. Still Here is a production of The Sick Times, a nonprofit newsroom chronicling the ongoing Long COVID crisis. Our theme song for this episode is The Rude [00:37:00] Mechanical Orchestra’s rendition of Which Side Are You On?,

originally by Florence Reece. I’m Melanie Marich, and I produced this episode. Our engagement editor is Heather Hagen. Sophie Dimitriou designed our podcast cover art. And Miles Griffis and Betsy Ladyzhets are your co-hosts and The Sick Times co-founders. Thanks for listening