#21: Spotting Long Covid Pseudoscience

Zeest Khan (00:00)
Hi, I'm Dr. Zeest Khan, the Long COVID MD. I'm a physician with Long Covid and I've applied all of my medical expertise to my recovery. Luckily, it's working and I want to share what I've learned with you. On this podcast, I help you understand your body and understand the healthcare system so you can move your own health forward.

We've got a lot to talk about, but remember, nothing I say here replaces personalized medical advice from your healthcare team. Let's get started.

Zeest Khan (00:38)
I've used social media to follow Long Covid news ever since I got sick. In fact, I didn't even use Twitter until 2021 and now I'm on it more than I'd like to admit. And while it's certainly not a perfect platform, it is one way to crowdsource information and learn what other people are doing for treatment.

Lately though, I've noticed that some of the accounts that I thought were run by experts are not really experts. And as my cognition improves, I'm noticing a lot of their science posts are not verified science. So it got me curious. How did I get the impression I was following legitimate medical advice from non -medical accounts? And how can I prevent this from happening again?

To answer these questions, I looked into the field of wellness, pseudoscience, and scams, and I'm sharing characteristics of pseudoscience accounts that I think apply to the digital long COVID space. Compare this checklist to accounts you follow that claim to be, or speak as though they are, reliable sources of long COVID science.

Now before we start the checklist, I want to clarify a few things. first, I'm focusing this discussion on accounts that are aimed at patients and their caregivers. Second, I want to note that opinions are different from expertise, and both are really important.

You do not need a particular education to share an opinion. You don't need any education to share what has or has not worked for you. You don't need any credentials to share something that you've recently learned and you think is important to share. What I'm focusing on here are accounts that use a voice of scientific authority.

That's very different than accounts that are sharing personal experiences.

Third, it's important to note why there are pseudo -experts in this space. It's because there are not enough validated experts. And until our established medical structures answer our questions and catch up to our needs, those of us with long COVID and a lot of poorly understood medical conditions

are left with a medical void. That void should be filled by validated medical research, but even if it's not filled with that, it's gonna be filled with something else. A lot of what's filling it are patients who are trying to learn medicine from scratch, out of necessity.

It's filled by caregivers advocating for their loved ones and again, learning as much as they can about the possible causes to this disease.

but some corners of this void are being filled by opportunists who have identified a newly vulnerable population.

So as I discuss the characteristics of pseudoscience, I wanna be careful that I don't sound like I'm criticizing patients for learning as much as they can about long COVID and sharing what they've learned. That is not my intention here. Frankly, without patients sharing their experience on social media accounts, I would have gone months or maybe another year without being diagnosed. I wanna hear.

stories, I want to hear anecdotes, I want to hear the sources that other people have used to guide their medical journey. But I also want context and transparency. What bothers me specifically and what I want you to be able to identify are social media accounts intentionally misrepresenting their credentials

using deceptive language and allowing you to believe they're speaking as an authority. So the checklist I'm going to lay out today is a set of guidelines to use when assessing the reliability of a source. The characteristics or the items on this checklist relate to each other. They often build on one another. So if an account has several matches to this list, it's more worrisome than if there's just

Consistency also matters. Are they using these techniques or this type of language repeatedly? If so, take what they say with a grain of salt. And the last thing I'll say is, my hope is to prevent you from being misled. But don't feel too bad if you are. I've been misled. I've been scammed more than once. Luckily, all I lost was money.

And chances are you probably will lose money too if you haven't already in this process. But that's better than getting harmed, which is unfortunately a possibility.

So with all that being said, let's get to the checklist. The first characteristic of a pseudoscience account is also a characteristic of scam artists, and that is they stoke your fears. By provoking strong negative emotions like anxiety and insecurity, they draw you in.

It's a great way to get attention and engagement. But as people living with long COVID, we already have enough to fear. And for the most part, nobody has to convince us to pay attention to our health. We are paying attention.

So look out for accounts that tell you things that make you tense. Things like, you're never gonna get better. Something even worse is brewing in your body. You've been totally abandoned. Remember, pay attention to who the target audience is for this account.

Who is this message for? If they're targeting you, a person already affected by long COVID, and they're consistently stressing you out, this might not be a reliable or well -intentioned source.

It certainly isn't a beneficial source because apart from being misled, we need to prevent our emotional health from taking a downward turn. we should always engage with social media thoughtfully and in a way that respects our mental health needs.

Two, pseudoscience accounts often use all or none statements. Apart from the statement, long COVID is a multi -systemic disease. It's really hard to make definitive statements on long COVID, much less very generalized statements. So examples of all or none statements include long COVID is caused by a deficiency in vitamin A or

Long COVID is caused by an excess of vitamin B or Long COVID will become cancer. If someone is giving you a definitive cause or a definitive cure, be wary.

So in step one, the sketchy account grabbed your attention. Step two, they made a dramatic claim. And now step three, they're gonna sell you something. And they're gonna sell you something related to that bold claim that they've made. They might sell you a supplement, a diet plan, a workshop, a protocol, a book. They can help you in exchange for money or

for your email address or other personal information.

What I've noticed in the long COVID space is that a lot of these sketchy products are one size fits all products. We're not personalizing doses, we're not personalizing timelines, we're not giving personalized advice.

These types of accounts give blanket recommendations. And that itself should make you question what you're hearing. Because long COVID as we know is diverse, it is nuanced, it presents in all sorts of ways. So it's really hard to believe that one protocol is right for a large group of patients like this.

The fourth characteristic of an unreliable long COVID account is that they speak outside their area of expertise with a sense of authority. Now there are definitely patients without a medical background who know more about long COVID physiology than most doctors do. Unfortunately, that's not uncommon, although I do believe and I see signs that physicians are catching

When you engage with accounts that share science, look for two things. Do they use their credentials or their title in their handle or bio? And do they use language that makes you believe they're speaking as an authority? If the answer to both is yes, then you need to ask if their credentials

match the topic they're covering. If they are speaking as an authority, I'll repeat, their credentials should match the topic they are covering.

The bottom line is credentials don't jump. An expert in one field cannot automatically assume expertise in another field, even if it's an adjacent field.

I'm a physician, so is an oncologist. An oncologist takes care of patients with cancer and knows information that I do not. I, as an anesthesiologist, have knowledge and skill set that the oncologist does not have. We are both physicians, but we are experts in two very different fields.

sources of scientific information that I return to make it very easy for me to understand how their credentials relate to long COVID. And if they don't relate directly, they make it easy for me to understand in what capacity they're speaking.

They're not hiding behind letters or a title. There is transparency.

And that's the strongest checkpoint that I

So how can you sort this out? The first step that I do is I look at the accounts name. Are they telling me their name? Some accounts don't. Some accounts hide behind a nickname or a handle. If they have titles in their social media name, I try to dig in a little deeper. So if they call themselves doctor,

I wanna know what their doctorate is in. Are they a medical doctor, like an MD or DO? Are they a chiropractor? Are they an advanced practice nurse or a physician associate who's using the title of doctor? If they have a PhD, what field is it in?

The next thing I do is look at their bio. Look out for descriptors or phrases that are vague. I've noticed people using the term biologic science to describe their degree.

Okay, So did you study human anatomy? Did you study photosynthesis? It's not clear from that phrase.

The use of these terms by itself is not a red flag. Sometimes people's degrees are so specific it's hard to elaborate in a short bio, so biological science is easy shorthand.

As a consumer though, it is vital that we can translate these terms so that we have an accurate picture of each person influencing our understanding of long COVID science.

the final characteristic of pseudoscientific long COVID social media accounts. the heavy use of scientific sounding language. I'm noticing posts that are so chock full of scientific and medical phrases that they can be impossible to get through.

And I see two possible causes of this word salad. One, the creator means well, but is just not an effective teacher. So think back to your favorite teacher. Effective teachers simplify complex ideas in a way that's accessible to their student. Their ultimate goal

is that we learn.

But what if teaching is not your goal? Some of these posts are so dense that it makes me think it's intentional. And from where I stand, I see it as a possible strategy. So a long scientific sounding post could be used to convince you that A, the issue is really complex, B, you are not equipped to understand.

the complex issue and C the person posting it is smart enough to understand it. So maybe you need to trust

Now that my mind is a little more clear, I have returned to posts that I couldn't understand in the past and I realized the post isn't complicated. It's simply convoluted.

A creator targeting people with long COVID, many of whom have cognitive issues, should make their content accessible to us. and I know that's a big ask because even if you have the right intentions, it's not always easy to do. Communication and effective communication is a whole field, but.

before the information can be helpful. It has to be easy to understand. So don't let these types of posts or newsletters or blogs convince you that your comprehension skills are the obstacle to understanding the post. If you hit one of these just scroll past them.

if you want to. if you're interested in really learning what that's about, try to identify the topic of the post and find another source that might explain it to you, like another source online. Another option is send it to somebody you trust and ask them to read through it. Does it make sense to them? You know, even if they're

familiar with certain scientific words or phrases, they should be able to understand the main point.

And I'll offer this. If you don't have someone who can look it over for you, send it my way. Email me and I'll give you my honest opinion. On a good day, I can usually identify a sketchy argument. I might not be able to piece out, you know, a journal article and explain all of the details. I am sending journal articles to my

know, group of support and colleagues and asking them to explain things to me. But I am certainly willing to look over a description of credentials or a social media post and tell you whether I think it is.

a legitimate scientific argument. Whether it's true or not, I won't be able to comment, but I can at least do that.

So feel free to take me up on that offer. And that's it. That's the five point checklist you can hold up to any social media account sharing scientific information about long COVID. One, they trigger fear and anxiety. Two, they use all or none statements. Three, they're selling a product connected to their anxiety inducing claims. Four, they speak with authority.

outside their area of expertise.

specifically the red flag is someone letting you believe that they're an expert in long COVID by advertising non -specific credentials like doctor or PhD. A really honest person, in my experience, will make it easy for you to understand how their education, their

or their life experience gives them insight into long COVID specifically. Remember, credentials don't

And the fifth item on the pseudoscience checklist is five. They use dense, complicated language that makes it hard to understand their arguments. Sometimes it's unintentionally bad writing. Sometimes it's smoke and mirrors.

Apply these guidelines to the next social media post you come by and tell me what you think. What have I missed? What would you add? Have you been tricked by a social media account? And if so, what do you think were the factors that convinced you this person was reliable? Email me at longcovidmd at gmail .com or message me on my website longcovidmd .com.

Follow me on X at doctor underscore ZEEST. DMS are open there. And remember the offer stands. If you want a second pair of eyes to review a claim or a person's credentials, I'm happy to take a look and give you my opinion. I can't advise you, but I'll tell you what I can decipher. I love hearing from you guys regardless. So drop me a line, even if it's just to say hello.

That's all for today. I'm going to be back in a couple of weeks. I'm taking a little break to enjoy the rest of the summer with the family and get some great interviews set up for you for future podcasts. I hope you're feeling well and bye for