In the early days of the pandemic, most of the cultural focus was on the necessity of quarantine measures and the distinction between mild and severe COVID infections. Yet by May 2020, some were experiencing the phenomenon of long COVID. Now understood as a post-acute infection syndrome, patients suffering from it have endured mockery, stigmatization, and accusations of lying. Nonetheless, support and patient advocacy groups have led the way, first in demanding medical and social recognition, and now in consulting with receptive researchers on diagnosis and treatment.
We’re joined by science journalist Tara Haelle, whose work has appeared in Scientific American, NY Times, Washington Post, and more. She’s also the Infectious Disease Core Topic Leader at the Association of Health Journalists. Her work covering the pandemic, vaccines, and the Long COVID connection, which combines reporting on the latest science as well as writing from patients and patient advocates, has been indispensable in understanding this spectrum of diseases.
Show Notes
Possible contender for a Long COVID blood test
RECOVER trial for Long COVID Treatments
New Yorker on the Yale LISTEN Study
LISTEN Study website
50% average lower prevalence in vaccinated people.
Tara Haelle’s Long COVID Connection project.
Opinion | Ed Yong: Reporting on Long Covid Taught Me to Be a Better Journalist - The New York Times
Six Ways of Looking at Crip Time | Disability Studies Quarterly
COVERING LONG COVID | Lygia Navarro
The Sick Times
Learn more about your ad choices. Visit megaphone.fm/adchoices
One thing that you have to keep in mind, we're still learning about this virus.
And there's an irony to the fact that we've probably published more on SARS-CoV-2 than most other viruses in the world.
And yet there's still so much we don't know.
It's only been four years.
That's like, you know, it's still a baby.
And so the prevailing hypothesis is there's multiple causes that overlap.
I kind of think of it in a similar way as what we're learning to see, even though it's a totally different realm of medicine.
Autism or schizophrenia, they're more like syndromes or umbrellas,
where we used to think schizophrenia was a disease.
And we're now learning it's actually a spectrum of different diseases.
And there might be completely unrelated diseases, they just have similar symptoms.
Hello everyone.
Welcome to Conspiratuality, where we investigate the intersection of conspiracy theories and spiritual influence to uncover cults, pseudoscience, and authoritarian extremism.
I'm Matthew Remsky.
I'm Julian Walker.
I'm Tara Haley.
We are on both Threads and Instagram at ConspiratualityPod, and you can access all of our episodes ad-free, plus our Monday bonus episodes on Patreon, or just our bonus episodes via Apple subscriptions.
as independent media creators. We appreciate your support.
Conspiracuality 195, Long COVID with Tara Haley.
Bye.
In the earlier days of the pandemic, when much of the world shut down and vaccines were the far-off hope, most of the cultural focus was on the necessity of quarantine measures and the distinction between mild and severe COVID infections.
But as early as May in 2020, some were experiencing and, importantly, tweeting about the phenomenon of long COVID or long-haul COVID.
Now, This is understood as a post-acute infection syndrome these days, and patients suffering from it have had to endure mockery, stigmatization, and accusations of making it all up or being crazy.
Nonetheless, support and patient advocacy groups have led the way, first in demanding medical and social recognition, and now in consulting with receptive researchers on diagnosis and treatment.
Now, on the conspirituality front, we are wondering out loud, will the same voices who insisted COVID was caused by 5G, was only really a bad flu, or was being weaponized to strip away our freedoms, Those same voices who spread misinformation about the vaccines and made fun of civic-minded caution, are they just going to weave long COVID into their paranoid reality distortions?
Will the neglect and cruelty of a for-profit healthcare system create a whole new wave of conspiracy theories rooted in the bitter experience of institutional failure and back-to-work neoliberal capitalism?
We're joined today by Tara Haley, a science journalist and reporter for the last two decades whose work has appeared in Scientific American, New York Times, Washington Post, National Geographic, and Politico, to name just a few publications.
She's the infectious disease core topic leader at the Association of Health Journalists.
We're excited to talk to Tara today because of her work covering the pandemic, vaccines and anti-vaxxers, and especially her project on Medium called The Long COVID Connection, which combines reporting on the latest science as well as writing from patients and patient advocates.
So, Tara, welcome to Conspirituality.
Thanks so much for taking the time.
Thank you for having me.
We wanted to start with some basics.
Is there an emerging consensus on how long COVID is being defined and diagnosed clinically?
Well, first of all, we can't even decide on a name.
Long COVID is the name that the patients gave the condition and really is the name that should be used, but there are other names out there like post-COVID-19 syndrome or Post-COVID-19 condition.
The CDC, of course, came up with the most ridiculous one, which was post-acute sequelae of SARS-CoV-2 infection, because we all want to be able to say that, right?
Oh, boy.
So yeah, if we can't even come up with a name that we all agree on, fortunately, it is moving more and more toward using the patient named Long COVID, as it should.
But the CDC and the WHO and the UK, they've all put their heads together separately, like the CDC came up with their definition and the WHO did, but they're very loosey-goosey kinds of definitions.
The CDC says symptoms existing four weeks or more after the acute infection affects multiple systems in the body.
The symptoms come and go and the progression may worsen over time.
And they do acknowledge that long COVID, it's not one condition, it's overlapping conditions that probably have different risk factors and causes.
And the WHO says something essentially similar.
Their timing is a little bit different.
They say it's three months from the onset with symptoms that last for at least two months, but they don't have a minimum number of symptoms.
And they say the symptoms have to be anything that's not explained by an alternative diagnosis with a big impact on everyday functioning and a clustering of symptoms that, again, can come and go.
It's persistent or it can fluctuate.
And if you think about trying to describe all of that, it's a diagnosis of exclusion, which means you have to rule everything out first.
And that's one of the things that's really frustrating for people who have long COVID, because they have to go through all these tests.
And then the answer is, oh, yeah, you have long COVID, which often they suspected from the start, but we don't have any blood tests or other tests.
that we can give them.
It's called a clinical diagnosis, which means it's based only on symptoms.
And that makes it a really frustrating experience for patients, and it also makes it really hard to define.
Researchers are working on trying to develop a tool, kind of like we have for depression or anxiety,
where you check off certain symptoms, and if you have X number of X symptoms
or something like that, That's one way.
And then there's a researcher, and I don't know if I'll be saying his name correctly, but he's at the VA in St.
Louis, Ziad Alali.
He puts patients in sort of two buckets.
One of those whose primary symptoms are like brain fog, fatigue, Nervous system issues, post-exertional malaise, which is where you do stuff and you get really tired and you can't recover well, and then those whose primary symptoms come from damage to their organs.
It's a little bit easier to track because it happened during the infection and it's the lingering impact on the organs, which is what we see with, for example, post-Lyme syndrome.
So it's, I know that's a very long answer to your question, but that's where we are.
Yeah, it's the Facebook relationship status of it's complicated.
It is.
Yeah, it's definitely complicated.
There seem to be several hypotheses about what long COVID actually is, like what is it doing?
How does it function?
We've seen ideas like residual virus that are sort of like trapped in the tissues, vascular damage, microclots is I think a newer one.
Maybe nerve damage, certainly mitochondrial dysfunction when it comes to the post-exertional malaise and the fatigue, perhaps the development of an autoimmune inflammatory response.
I'm curious from your knowledge, are these competing candidates or might they account for the different clusters of symptoms as you were just mentioning?
Yes.
It's complicated.
Yes, it's complicated.
They're not necessarily competing.
It's very likely that there are different underlying causes accounting for different clusters, but those clusters could overlap.
So a person could have both microclots and an autoimmune inflammatory response.
Some of the stuff that we'll talk about later, dealing with the blood proteins that have been identified that are linked to cognitive dysfunction, Those might be related to microclots, but the same person who might, if that is the case, I mean, that hasn't been proven, but if that is the case, they could also be the people who, in a different study, had an overreactive immune response to the Epstein-Barr virus.
They don't exclude one another, but it probably One thing that you have to keep in mind, we're still learning about this virus.
And there's an irony to the fact that we've probably published more on SARS-CoV-2 than most other viruses in the world.
And yet there's still so much we don't know.
It's only been four years.
It's still a baby as a disease.
And so the prevailing hypothesis is there's multiple causes that overlap.
I kind of think of it in a similar way as what we're learning to see even though it's a totally different realm of medicine.
Autism or schizophrenia, they're more like syndromes or umbrellas where we used to think schizophrenia was a disease and we're now learning it's actually a spectrum of different diseases and there might be completely unrelated diseases, they just have similar symptoms.
So, we don't really know.
What we do know is that something about SARS-CoV-2 throws our bodies into haywire and it affects different people in different ways.
Now, difficult to define.
Difficult in terms of clinical diagnosis.
That also means it's probably difficult to come up with a general sense of how many people we're talking about.
Is that right?
It is.
The CDC's estimates are about 7% of adults have ever had long COVID.
And then that was their estimate from around September of 2023.
At that time, about 3.5% of people had it at that given time.
Now that was the CDC's estimate.
If you, a quick back of napkin Calculation, there's like almost 260 million adults in the U.S., so that's about 18 million adults who have ever had it.
Al Ali estimates up to 20 million.
But the one that I think is really unsettling is that 3.5% who currently have it, that's about 8.7 million people.
And to give you an idea of what that looks like, New York City has a little over 8 million people.
8.7 million is about the population of Los Angeles, Chicago, and Houston combined.
It's a lot of people currently living with this condition, and about 4 million of those people can't work.
Global estimates outside the U.S., like looking at the whole globe, about 65 million, and that's a very nebulous number.
That's a number from the Lancet, but it's, you know, it's a lot harder to get a number like that because the reporting is so difficult in other countries.
Yeah, and one thing I've seen a lot in different articles and the ways people talk about the percentages is sometimes there's the trickiness of like, okay, how long is long?
Exactly.
And then there's also the trickiness of how much are we talking about the clinically diagnosed reported case, which is going to be smaller, right?
Or are we also looting the data that comes from self-reporting?
I know the CDC has a tool that they use for that as well.
And that's why you see the bigger numbers.
So you'll sometimes see like anywhere from 7% to 24%.
It's like, that's a big range.
It is a big range.
Yeah.
Keep in mind, that's total people, meaning that does not account for those who definitely had a positive result on a
SARS-CoV-2 test.
When we look at people that we know had, well, that have known or suspected COVID, so they either tested positive or they had all the symptoms and we assume that they had it, It's a little bit easier to pin down the number, but even that's a range.
It's somewhere around like 11 to 19 percent.
Most people settle around 15 percent.
And with the vaccine, it's around 5 to 10 percent.
So it's 1 in 10 is a good number.
But as we'll talk more, it gets complicated from there.
In terms of total numbers, when you say that half of the 8 million you referred to earlier can't work, do we have better information from unemployment stats than we do from the diagnostic or medical criteria?
You know, I actually don't know if the Department of Labor has done a study on this yet.
That came from Al-Ali's estimates, and I think the CDC asked that question when they did their assessment.
Um, but I, I, that would eventually be easier to get, but keep in mind it was only, um, I think it was only in 2021 that it was declared, um, an official disability under the ADA.
And I know several people, I mean, I was just reading a piece from somebody
yesterday for what we're going to talk about the long COVID connection,
where it took him three appeals and many months to get his short-term disability
for having long COVID. So it's still difficult to even get the recognition for it,
which makes it even harder even to get, you would think an estimate for employment would be easier
to get, but not necessarily.
You know, for any listeners who are just sort of trying to, trying to make sense of it. One of the things that,
one of the ways that I've sort of gleaned, and I want to ask you if this is accurate is that it seems
like whatever the emerging picture is, whatever the number actually is,
the people who currently have long COVID, it seems like about half of them are experiencing the
really severe I can't work anymore.
Does that sound about right?
That sounds about right.
It's hard to say because, I mean, okay, I had COVID back in October.
I managed to make it almost four years before getting it.
I got it at an American Academy of Pediatrics meeting, of all things.
And I was really dragging and exhausted for like a good four to six weeks after it.
Now that's, I didn't have long COVID, but I mean just the fact that it takes, another friend of mine had a Pax Lovett relapse and she's still exhausted and her initial acute infection was three and a half weeks ago.
So And other people, you know, it's like, it's true that there are some people who have an extremely mild version or even asymptomatic.
So it's, it's really hard.
How much is too much, right?
I'm still doing, I'm still playing catch up in my work because of how much time I lost back in October.
And that was without having, you know, even in close to the definition of long COVID.
Now, in terms of risk factors.
It does seem like severe COVID infections are more likely to convert shall we say, but there have been clearly like plenty of people who have had you know asymptomatic or mild COVID and yet here we go.
But there was some alarming news in late 2023 of a study that appeared to show that each subsequent COVID infection regardless of severity Cumulatively might increase the likelihood of developing long COVID.
Is that right?
Yes, that's right.
But there's a big caveat there.
So there was a study in August 2023 that was actually LLE's VA study.
He followed about 138,000 U.S.
veterans and he did find an increased risk with each infection.
But there's some caveats there.
First of all, it's veterans.
That's a very specific population and it's predominantly white males.
So, we don't know how that, and we don't know what their baseline health was.
I mean, they did take in, you know, they made adjustments to account for baseline health, but still, that's a very specific population.
Yeah, and median age was 60.5, I think, right?
Exactly, they're older.
And so, another study later in October 23 found the risk for a second infection to be lower than the first infection.
And so one of the things, there's a couple things to think about here.
One, the risk per infection can be lower, whereas the risk from multiple infections could be higher.
So what I mean is, if your risk of getting the infection, I'm making up these numbers, so please don't take these as real numbers, but let's say that the risk of getting long COVID with your first infection is say 20%, Your risk of getting long COVID with your second infection might be 10%, but your overall lifetime risk of getting long COVID is higher with your second infection.
Does that make sense?
The 20 and the 10 combined.
So, so, so you have a 30.
Yeah.
Right.
It's kind of hard to wrap your head around because it's the difference between the per-infection risk versus the cumulative infections risk.
Now, it could be that most people who are already, there could be a susceptibility thing, right?
You could be, if you're someone who is susceptible for some reason to developing this, for whatever reason that we don't know yet, it might be that the first time you get it is when you get it, and the reason that fewer people get it with the second infection is they weren't in that susceptible class, right?
Or it could be you build up damage over time.
Each time you get it, you get more damage.
The damage builds up.
And it could be that both are true.
And then we throw in the other curveball.
It could vary with the variance.
I am very cautious about both of those studies.
I think it's reasonable to say that The risk for the second infection is lower than the risk for the first infection in the sense of comparing first to second infection, but the cumulative risk is greater.
I think there's enough evidence to say that's likely, but I don't think we know enough yet.
I don't think we've had enough time.
I don't think we've gone through enough variants, and so I'm really holding back on that.
Are you guys familiar with the statistical thing called Simpson's Paradox?
No.
Just a quick little mini thing to educate your listeners.
The Simpsons Paradox is a statistical phenomenon where the patterns of the whole large group might be different than the patterns when you break the groups down.
So you get actual opposite things.
So for example, you could do a survey of 5 million people and find out that out of the whole, people like spicy food for breakfast.
But you break that down and you find out that that, you know, maybe you're mostly talking to people in Texas or who have an Indian cultural heritage or, you know, if you're looking at toddlers, you're not going to find a lot of spicy food for breakfast lovers, right?
So what you find looking at the aggregate might fall apart when you break it into pieces.
And I think that's one of the things we have to consider here.
Yeah, that's important.
And the thing about that, too, is I'm glad we're having this conversation is that when that study was first being talked about, there was there were a lot of headlines.
Right.
And there was there was a lot of like leaping to like, oh, we know this new thing now that is calamitous.
Yeah, there were.
Yeah.
Well, and I don't want to downplay it because I still I still wear a mask.
My husband is, you know, is a higher risk than other people.
I have my own risk factors.
We still mask.
My kids still mask.
I live in Texas and my kids still mask to school.
We're like, you know, unicorns out here.
Brave unicorns, yeah.
So, you know, it is important to continue protecting yourself and to take disease seriously, but I also think you need some perspective.
You know, there's still a lot we don't know.
Let's talk about demographics.
Are there populations more impacted than others according to gender, race, income, access to care or insurance?
Definitely.
Women more likely than men, probably about one and a half times more likely.
What I don't know is whether that's about reporting, because women are more willing to report symptoms and men are notoriously less willing to, but we see that in other diseases too.
We see that with lupus and other autoimmune diseases, so the chances are that's a real finding, not a reporting.
The ethnic group that is at the highest risk is Hispanic Latino, and then followed by white, followed by black, followed by Asian.
Lower income are more likely than a higher income and that could be a factor of lower baseline health because of poor access to health care.
It could be lower ability to treat the illness when they have it.
It could also be just a higher risk because they're around it more.
There's lots of different reasons for that risk.
People who are unable to rest are more likely to develop it when they have the infection or immediately after it.
And if you think about, you know, people who are in jobs where they don't have that option, you know, it's also, interestingly, apparently it's slightly, very, very small difference, but more common in rural areas and smaller cities than in sort of the central large metro areas.
That's a weird finding to me and I wonder if that finding has more to do with income or access to care.
There are also health-related factors like people with pre-existing conditions or who are unvaccinated or higher body weight.
But in terms of the other demographics, the highest age group might surprise people.
The highest age group is actually 35 to 39.
And it's not, you know, followed by the 40s, followed by the 60s.
You would think... Wow!
Yeah, no, you would think... Now, it could be, not to be crass, it could be that the people who are older just die, right?
Yeah, yeah.
Because the rate's higher.
So that could be the reason for that.
But with insurance, there's not really clear... I wasn't able to find any data on insurance, but chances are that it's probably higher among people with poorer insurance, simply because they have less access to care.
The age category also might speak to reporting trends or access or sort of informational issues around like, well, you know, this age group is more likely to use self-reporting tools or be more attuned or maybe educated.
Yeah.
One of the topics you reported on this past September was the breakthrough identification
of blood proteins associated with clotting that may explain the cognitive symptoms often
referred to as brain fog and often dismissed, as well as shortness of breath.
Interesting little overlap there.
Tell us about this and if it might be a significant step towards some kind of diagnostic blood test.
Yeah.
Basically, there were two blood proteins.
One of them is called fibrinogen and one of them is called D-dimer.
Basically, both of them are associated with clotting.
When they looked at these, they found that if you have higher fibrinogen levels when you have the acute infection, it was measured at the acute infection, not later, you were 50% more likely to have brain fog.
But, and that is helpful in that, you know, if we develop, you know, it can become part of a bigger hole in maybe creating a predictive tool, but only 10% of people With high fibrinogen went on to develop that brain fog and about seven and a half percent with high D-dimer.
However, when they compared people who had high fibrinogen or high D-dimer and did not have COVID, they found that the only association was those who had high D-dimer.
In other words, if you had high fibrinogen with or without COVID, you were more likely to have cognitive issues.
Whereas the D-dimer, you were only going to have cognitive issues if you had COVID.
It's very preliminary.
Chances are what this does is two things.
One, it starts to help us see the pathophysiology of the disease, like maybe how it might, you know, some of the contributors to it.
And that is helpful.
Another thing it might do is this information combined with more information we can hopefully get later might help develop a predictive tool so that, you know, you can see how at risk is this person of developing long COVID later when they have COVID.
There's another study in Nature that found several immune-related lab results and some hormone-related, they found lower cortisol levels.
And that one, that was by a researcher who's also done a lot of work in this area, that found like a 94% accuracy in identifying long COVID, but it was only 275 people.
It was a relatively small study.
So, you know, and that kind of thing would need, you know, further research to confirm it or whatnot.
So, There's progress on it.
The thing that's frustrating is that that progress, and we'll probably get to this here in just a minute, is primarily in identification, not in treatment, which is what we really need.
Okay.
Well, on that note, the NIH has launched something called the Recover Study, and it's funded to the tune of around $1.5 billion, although I saw something recently that they'd pumped more money into it.
They've been recruiting participants nationwide, I think 24,000 as of July, which is the last date I saw a figure for and it's still growing.
Their website says they're striving for diversity of participants.
They've been consulting with patient advocacy groups.
It looks like they're planning on several parallel studies that focus on treating different phenotypes or clusters of symptoms.
And I noticed that the initiative started in 2021, but it appears to be ramping up as of the last six months.
Do you know anything about this study or others that may be similar?
One of the best sources on this, Betsy Laudagette, is a journalist who's done a lot of work on long COVID in general.
She actually started The Sick Times, which is another long COVID publication that I highly recommend.
She wrote a great piece in Stat about this because in early 20, or about halfway through 2023, about The majority of that, the initial 1.15 billion that was put into that, most of it had been spent, and it had been spent on observational trials, basically identifying, watching, understanding, but not on clinical trials, not on trials to actually test, you know, treatments that could help people.
So only about 15% of that, you know, 1.15 billion went to clinical trials, which in research terms is not very much.
It was about 171 million.
They did, like you said, the NIH, just about a week and a half ago, actually, just pumped in another $515 million.
That's good news, and they are testing some things, but they're not testing very much.
They're testing PAX a little bit, a couple drugs for sleep disorders, a couple drugs for autoimmune disorders.
There's not a lot in the hopper for testing treatments, and there's a lot of frustration about that within the long COVID community.
So I don't know if that's because of a difference in priorities.
I don't know if it's, you know, oh, we have to know more about the disease in order to treat it, or if they just don't know which treatments to use.
But I know that there are a lot more drugs that other researchers want to test that they can't get funding for.
You know, there is that.
But they have found some, that immune study I mentioned, the one, it was done by Akiko Iwasaki, that immune system, like, differences that was found, that was from that study, which is useful.
So I mean, it has found some good things, but I, there's a lot of frustration and disappointment from it as well.
Okay, so speaking of patients, before we ask this next question, I wanted to share something personal with our listeners and with you.
My mother has, and God help me to pronounce this, myalgic encephalomyelitis.
Is that about right?
Usually referred to as chronic fatigue syndrome or by the acronyms ME or CFS or ME CFS.
She also has something called POTS.
Which means she experiences intense anxiety and elevated heart rate from certain quite ordinary movements, as well as mass cell activation syndrome or MCAS, which I've kind of learned from her is like my worst seasonal allergy day sort of turned up to 11.
We're going to talk about why these types of conditions are relevant for long COVID in a minute.
But I just want to say I've really watched her struggle with this over the years.
And in some ways, she's been fortunate because she's had long periods of remission in between extended periods of being quite debilitated.
It's probably been its worst for the last few years.
But in addition to the helplessness, the loss, the exhaustion, the loneliness she's had to deal with, She's also routinely been dismissed and she's had her life altering symptoms minimized by doctors, by friends, by family, and you know, by myself.
So case in point, she's been a vegetarian most of her life and for a long time, I just thought she needed to eat some eggs and meat, you know, or work through her trauma.
Maybe this is coming from some psychosomatic place.
Maybe she needed a consistent exercise routine.
I really would try to motivate her to do that over the years.
It's been several decades now.
But I've since learned that people with ME deal with this double devastation of a chronic, often unrecognized and largely untreatable illness, along with being mischaracterized as exaggerating, playing the victim, or basically being hypochondriac.
So I asked her to leave me a message about the one thing she wishes everyone would understand about ME CFS, and I thought I'd just play it right now.
It's often a life sentence with very little possibility of parole.
It's bleak and it's unsupported by medical people and it's very misunderstood by lay people.
The other thing I'd like people to know is that they actually can help.
It's an incredibly lonely situation for people and friends often disappear because they don't know what to say, they don't know what to do.
But I'd like to suggest that people become curious.
Ask questions.
If you know someone who has any of these conditions, ask what their life is like.
Ask.
How you can help, offer support, engage other friends to create some sort of social network.
Don't abandon people.
It's a terribly lonely, lonely place to be.
Well, I mean, I think on behalf of, you know, all of the podcast listeners, Elaine, thank you so much for sharing that.
That's really incredible advice.
And you're a long way away from where I am in Toronto, but I'm definitely curious in your life, and maybe we'll hang out.
I really like that she encouraged that in a way that was open, because I think a lot of people want to ask questions, but they're scared to.
And then other people want to pretend like it doesn't exist.
They don't want to hear about it because hearing about it acknowledges that they might be at
risk for it and they don't want to face that reality and you've got those sort of dueling
approaches.
You know, the other thing that I hear in her precision and lucidity is just the years of
direct experience.
And it really reminds me and I imagine that so many people who are suffering from, you
the so-called contested illness like this, you know, are like the...
People in the outlands somewhere, rural folks, often indigenous people who are on the front lines of climate change.
They don't have the satellite photographs, they don't have the archival data for how their ecosystem is changing, but they know about how they feel.
They know about fish stocks and ice melt rates from year to year.
They can tell you firsthand what's happening in very clear terms, but not in the context of an institution or peer review.
I guess, Tara, we're pivoting now into how this condition is understood and held by our society.
And I think this is a good place to pivot, which is a question about how the long COVID community is learning from, you know, these chronic disease canaries in the coal mine, like people who have been suffering with MECFS for a very long time.
I'm going to actually talk about, before I talk about what the long COVID community is learning from them, I want to talk about what doctors and the public and scientists are learning first, because the long COVID's arrival is what allowed ME CFS people to be heard at a greater level than they had
heard before. They'd been screaming all along. It wasn't their fault. They weren't being heard.
They were being, you know, they were, they were saying, look at me, look at me, look at me,
listen to me. And some scientists were listening, but most weren't. They were dismissed like, like,
you know, as what happened with your mom, you know. And I think what happened with long COVID is
when a whole bunch of people experience these symptoms in a very short period of time with a very
clear underlying cause, the acute infection, we couldn't ignore it. Right.
And yet we still are, right?
So it's, on the one hand, like you couldn't possibly ignore this.
There's just, you know, like I said, those three cities combined, 8.7 million people currently, There's just too many people living with it, and yet they still are facing that.
So on the one hand, it finally forced a lot of doctors and scientists to take other conditions that people have been screaming about seriously.
You know, oh, maybe those people weren't crazy, right?
And it's It is allowed the long COVID community to give a boost to those, you know, to those individuals.
Now, at the same time, yes, the long COVID community is learning from the ME CFS community.
And I think the biggest thing they're learning is that you have to do a lot of your own research.
And that's those are like some, those are some scary words.
I know we're going to come back to that.
But I mean, that's the problem is you do you really do have to do a lot of your own research, you have to educate your own doctors.
And that can lead to problems, right?
I find myself educating my own doctors about things sometimes, but I have a strong background in research and a lot of people don't.
So, it's a sort of a double-edged sword there because doctors obviously did not learn about this in med school.
They don't have time to take like a four-week hiatus and do like a mini course on it, okay?
So, you know, I have a little bit of understanding for why doctors might not understand this.
But I have less understanding for the doctors that don't have any curiosity about it, as your mom was encouraging them to have.
And there are a lot of doctors who don't have that curiosity.
And there are a lot of doctors who are not well practiced at listening to patients, much less believing them, right?
And then those are different things.
You got to listen to them, and then you got to believe them.
And those are, you know, that's that's two different steps there.
And I've had, as a woman, I've had many of those experiences myself.
We know that women experience that more.
But I do think that the, you know, the long COVID community is learning from ME CFS people, if not just doing their own research, also how to organize and advocate for themselves.
And the combined voices are making a difference.
I don't know.
Well, not that I don't know.
I know that we would not have had that recover study if not for the patients advocating for themselves.
That recover study would not exist without the patient saying, give us a damn study.
We need you to fucking study this stuff.
Right?
And I'm using those words intentionally because that's, you know, that they needed to make themselves heard.
And imagine how hard that is to do when you're already living with this condition.
Right?
Yeah.
So using the tiny amount of energy you have to advocate for yourself and research and organize.
Yeah.
Exactly.
Yeah, along those lines, a key aspect of that paper we referenced before that was looking at the specific blood protein elevations, in the paper there was this recommendation to doctors to not dismiss patient reports of symptoms like brain fog and you reported on that too.
I have never seen anything like that in a medical paper before.
I was blown away when I saw that.
I was really happy to see it, but I was also blown away.
I have never seen anything like that in a paper, in a paper that reported on blood proteins, right?
If it was like a social science paper or a paper looking, but this was a paper simply looking at blood proteins and they have like two paragraphs saying, yo, don't gaslight patients.
And I know gaslighting is the word we're going to discuss here.
Yeah, I mean, because some patients will refer to the kind of dismissal that the paper is advising against as medical gaslighting.
And it's, you know, a really important term that I think cuts to the heart of our concerns here on the podcast because it is being used primarily to describe medical avoidance and neglect.
The cumulative feeling that patients are not being taken seriously.
And we know that this impacts women more than men.
We know that This term also is transitive with other discourses of abuse and accountability.
So, women whose Me Too stories were denied or minimized were gaslighted, for instance.
And some of the influencers that we follow, like Kelly Brogan and Christiane Northrup and others, really lean into that meaning when it comes to their criticism of the medical industry.
So the problem is that the term implies nefarious intent, that doctors like abusive partners that are intentionally trying not only to deceive clients, but to make them feel insane to the point of suicide, that that's what's going on.
That's the story of the old film noir.
For a lot of people, that specific meaning around intentionality has been lost, but for those who are vulnerable to that worry, that concern or paranoia that leads to conspiracism, that meaning might still be there.
And so, we just wondered if you had any thoughts on that, Tara.
Yeah, I do think it's an appropriate term to use when you specifically say medical gaslighting, because that has now become its own thing.
But it is important to distinguish between that kind of gaslighting and the kind of gaslighting that was in the original movie Gaslight, right?
The Ingrid Bergman film.
In that one, it was very intentional.
It was an abusive partner who wanted to drive her to suicide, right?
And we initially saw gaslighting used in domestic abuse situations.
Yeah.
But it has broadened.
And you will see psychologists who get frustrated with that.
But I, you know, the horse is out of the barn, right?
Yeah.
So I think you just need to be really cautious about how you're using the work.
You will, I wrote a story about gaslighting at work with employers.
And one of the things that I discovered in talking with experts on that was that you can gaslight and not realize you're gaslighting.
So in the movie, it's intentional, right?
And with partners that are abusive, it's intentional.
But when you go out a little bit broader and you use it in different contexts, I think we have now accepted in our cultural lexicon that you can gaslight someone without intentionally gaslighting them.
So it might feel nefarious, but it isn't always nefarious.
I think it most often comes from arrogance, right?
I think it's, you know, arrogance or ignorance and frustration.
The doctor doesn't know what to do, and so they just miss them because, I've never seen this before, I don't know what it's about, you know?
I think that's part of it.
So, I don't think, I acknowledge the danger that can be inherent in using the term, but I don't think we have a better term, and at least it's a cultural shorthand to use, but we need to be careful with how we use it.
And so, You know, there's different variations there.
It is frustrating that being gaslit, it does, it can, lead people down to a path of conspiratorial thinking.
There's someone in my life that I care about, that is very intelligent, who, when after their pregnancy, They developed these really horrible sort of scaly skin peeling things.
They went to doctor after doctor after doctor and they ended up wanting to do one of those like allergy skin prick tests that are like by a naturopath or an acupuncturist or I don't know what.
And I tried, you know, it was like an internet test and I was trying to advise them against it.
Three years after that happened, I was at a dermatology conference and I saw what they had on the screen and it blew my mind.
And I was like, Oh my God, that's it.
And I immediately messaged this person and was like, look, look, it's what you have.
There were doctors who knew about it, but it was just such a small, unknown thing.
And it was very specialized.
And they did go down that path because they couldn't find anyone to listen to them.
You know, and it's, it's frustrating.
I think we are seeing a lot more humility among doctors in the training that's happening today, but there's a lot of doctors who are working that were trained years and years ago under a sort of a different paradigm, right?
More of the, I am the doctor and you are the patient.
I think of it, I used to teach high school and I could, I would see this among my colleagues as teachers.
There were the teachers who taught like I did, which was, I respect my teacher, I respect my students.
And my students respect me and it's a two-way street, right?
But there were the old school teachers that were like, nah, I'm the teacher.
You're the student.
You do as I say, because I'm the teacher and you're the student.
And that's the end of the story.
I don't need to respect you.
I just, you know, you just need to respect me.
And I think that's that, that paternalistic, that, Paradigm is what it used to be, and we still have a lot.
No, there's a lot.
I don't want to paint with a broad brush.
I have had wonderful doctors that are in like their 70s who are humble and listening, you know, so it's just I'm talking more about sort of the training that they underwent in the past.
Yeah, and those doctors in their 70s are just people who kept learning interpersonally as well as keeping up with the science.
They actually developed as human beings, right?
So that was cool.
Yeah, they may have also just been nicer people to start with.
I think we have to have a little bit of empathy and compassion for the fact that when someone seeks answers and they go to authority figures or figures with expertise for those answers and they don't get them, they're going to look somewhere else.
Absolutely.
And if there's somewhere else that's going to give them answers, even if they're the wrong answers, What else are they going to listen to?
And that's why people, that kind of exploitation, oh, nothing gets me angrier, right?
Yeah.
I mean, especially if those answers are wrapped up in, yes, I feel your pain.
Yes, I see you.
Yes, your experience is valid.
I mean, I think that medical gaslighting is a perfectly reasonable term.
I understand why people use it.
It reminds me of another psychological term that you don't hear as often, which is mystification,
which is that, which is basically just telling someone, no, what you want or what you say
you feel or what you're thinking is actually not like you're, you're actually wrong about
that.
You don't really feel that way.
You don't really want that thing.
You're not really having that experience, right?
It's, it's the invalidation instead of being like, well, I, I haven't seen this before.
I actually don't know what's going on with you.
And so I guess we're going to keep trying to explore and I'm so sorry that I'm not able
to give you answers, right?
I mean, one thing you've warned about in your writing is how people with newly emergent chronic illnesses that are maybe not well understood or well treated are particularly vulnerable to charlatans, to snake oil that is often as high priced as it is lacking in supporting evidence.
And, you know, what's tricky about this, I think, is it can generate false hope.
It can rob people of their money and time.
It can make them turn away from avenues, you know, science-based avenues that potentially might bear fruit down the line.
And besides being likely and effective for that reason, it can be kind of dangerous.
So, how do you think about this line between really listening to the lived experience of patients, which we were just emphasizing, and encouraging people to do their own research in a way, right?
While at the same time encouraging skepticism about You know, what might drive unwarranted faith in quack treatments when medical science is not providing satisfaction?
First of all, I'll say that I don't think there's a line.
I think it's a spectrum, right?
I think science and medicine like life, they're not black and white.
They're full of grays.
Lots of grays can also be perilous, right?
I mean, it's true, you know, once upon a time scientists believed that miasmas spread disease before we understood germ theory.
So, you know, science does get things wrong.
That's what science is.
I think a lot of people think of science as this body of knowledge as opposed to an iterative process through which we stumble forward, you know, two steps forward, one step back and eventually find out the truth.
I think there's a lot of, you know, the way we teach science is part of that.
But to answer your question, I actually have spent a number of years writing a newsletter for an organization called DES Action USA, and it's for people who were affected by DES.
DES stands for diethylstilbestrol, and it was a very potent estrogen that was given to women who were pregnant between about the 50s to 70s, basically.
It's actually the largest pharmaceutical disaster in US history, and yet a lot of people haven't heard about it.
It's our thalidomide.
And what happened was these women were given this drug allegedly to prevent miscarriage and premature birth, but there was not actually good evidence that it did prevent miscarriage or premature birth.
And what we found out in, I think it was 1973, was that the girls who were born to women who took this during pregnancy had a much higher risk of something called clear cell adenocarcinoma, which is a cancer of the cervix and vagina.
The women who, once this was discovered, it took a long time, first of all, to just get the drug off the market, right?
The drug is actually still on the market because it's used for other conditions, but to get people to stop...
To stop prescribing it for pregnant women.
We've also learned other things in the years since.
There's other higher risks that are associated with having prenatal DES exposure.
And there's risks for men as well.
And they're finding that there's, as with many other endocrine hormone issues, there's multiple generations that can be involved.
The grandchildren do have slightly higher risks in certain things.
And people can research this on their own.
I don't want to go into all the details.
But the reason I mention this is that in my years, Of working on the newsletter for DES Action USA.
I am talking with women who are now, they're all postmenopausal.
They range in their ages from like their late 50s to their 60s.
Their moms are in their 80s and 90s.
These are women who were harmed by pharmaceutical companies.
No question.
There is zero doubt that they were harmed.
There were lawsuits.
They won the lawsuits.
Lots of money was involved here.
There's no question about that.
I will come across a DES daughter, that's what they're called, or DES son, but more often a DES daughter, who thinks that the HPV vaccine is dangerous because it can cause infertility, which is a really common misconception about the HPV vaccine.
And I will tell you that I respond to that DES daughter very differently than I might my sister or my friend or my co-worker or whatever.
Because they have been harmed by pharmaceutical companies.
They have been.
They have a reason to hate pharma.
They have a reason to think pharma is evil, right?
And so I have to somehow validate their experience.
Their experience is real and I listen to them.
At the same time, I have to Help them, usually through sort of Socratic questioning, help them understand their own susceptibility because of that to cognitive biases and logical fallacies that all of us are susceptible to.
All of us.
None of us are immune to those things, right?
And so I think you can validate their experience without validating outright the path of pseudoscience they might be going down at that moment.
My question about that is, in terms of the journalist source dyad you're having interview a conversation, that sounds like a fantastic best practice.
Would you extrapolate that out to Psycoms and say, oh, in general, when you're speaking on this issue, you should really imagine the DES person out there who's listening to what you have to say.
I do think you need to.
I think you need to acknowledge that they could be part of your audience.
Now, that doesn't give carte blanche for them to say, okay, you should never do, you know, you shouldn't vaccinate or try this snake oil that's going to cure XYZ.
It doesn't mean that they have carte blanche to say that and you have to let them say that, right?
I want to be cautious about that.
It's just, you're using empathy, compassion, humility, To acknowledge that there is harm that has been done in the past and there are uncertainties out there.
It's just maintaining that balance between that and saying, okay, this path you're going down, let's really look at what you have there.
I know that science hasn't always found the best answers.
But is there actually evidence that this other thing you're looking for has an answer that's better than science?
And I think you can do that without invalidating their experience, essentially.
It's not easy to do.
What I'm suggesting, I'll be honest, it reminds me of talking to people who support Trump and trying to talk to them about the fact that the border is not actually about to collapse and take over the world or something, right?
So, you know, it's that same kind of cognitive bias that happens in political discussions.
It's not easy, and I'm not going to tell you I don't bang my head against the wall.
I do, right?
I do walk away from conversations.
I do sometimes scream and yell.
I mean, I'm human.
But you have to, you know, you have to acknowledge that your experience is so different from their experience, and that experience is still real, and what they feel about that experience is real.
And if you put yourself in those shoes, what would you be doing at that moment, right?
What would you be doing if you didn't grow up with whatever education you had that enabled you to think critically about things the way that you do?
Yeah, I mean, I would imagine that, because I have a similar experience, that what you're saying, what you're describing is certainly not by any stretch of the imagination guaranteed to work, but doing it any other way is guaranteed not to work.
Exactly.
Exactly.
Yes.
I mean, it's, you're going to fail a lot.
You're going to fail more than you're going to succeed with everyone.
And another thing I think is important about these conversations is that you're often, you're not going to win the argument right then.
And it shouldn't be an argument you're trying to win.
What you should be trying to do is plant a seed.
Yep.
You want to help them find their own way.
They want to find their own way.
And I have another brief story.
There is an individual that I spoke to years ago, probably in, oh gosh, 2014 or something.
She had never been vaccinated.
Her four kids were not vaccinated.
Her mother was an herbalist.
And she was anti-vaccine, but not in the I-go-out-in-the-streets-and-picket-signs kind of anti-vaccine.
She was the quiet anti-vaccine.
Like, I just don't vaccinate.
I don't talk about it.
It's not anyone else's business kind of anti-vaccine.
And she asked me some questions about it and I started talking to her.
I spent an hour on the phone with her.
I was walking through Walmart while doing it.
It was funny.
And I talked to her about how I asked her, you know, what is it about the vaccine, the vaccines that you don't like?
And she said that she thought we should heal ourselves naturally.
And I said, well, did you realize that one of the things that vaccines do is use the natural defenses we already have?
That's how they work.
And she said, what do you mean?
She hadn't realized.
And I described the measles vaccine, for example, as A fire alarm system, right, where it trains you to know what to do so that when the real fire comes, your body knows what to do.
And she was really surprised.
And by the end of the conversation, she said, well, do you think I should get the vaccine for my kids?
And I felt like I was, you know, it was that Star Wars thing.
It's a trap!
She didn't mean it as a trap.
It was a question.
But it is kind of a cognitive trap, even if she didn't realize it.
Because my answer was, I'm not telling you to go vaccinate your kids.
I'm telling you to learn more about this that you can ultimately think about this and make a decision.
Now, I tell you all this because fast forward, guess who got our whole family vaccinated against COVID?
Now, on the flip side, she also developed long COVID.
Not so nice.
But I mean, she did, you know, and I don't, I think she actually caught up her kids and some other stuff.
I'm not really sure.
But I, the point is you can, you can plant these seeds, right?
The flip side of that is that the Kelly Brogans of the world can also plant seeds and they're very good at it.
Yeah, you know, along these same lines of how to skillfully weave together,
you know, these different types of discourse, right?
How to thoughtfully, with a great deal of consideration, look at both empirical science and social science.
There's this fascinating new research project out of Yale called the Listen Study.
And it seems to me what's unique about it is that they're including listening, as the name suggests, to patient voices.
And drawing from newer research, as well as the work of the Patient-Led Research Collaborative, which has been around, you know, since the beginning of people talking about long COVID.
They also have these live stream town hall meetings where they're, again, really listening to what people have to say.
And there's a range of topics that people want to talk about, as you might imagine.
What do you know about this study?
Is there anything in particular that we think listeners should be informed about or might find interesting?
I actually hadn't been aware of it until you guys brought it to my attention, so I was glad that you did.
It reminded me of other efforts that have happened.
One of the earliest of these efforts that I learned about early on and at start was the Patient-Centered Outcomes Research Institute, PCORI.
What that means is they're focusing on patient-centered outcomes, what the patient's experience is I think that patient-centered outcomes should be included in every single clinical trial.
I don't think a clinical trial should be approved for moving ahead ethically unless one of the endpoints, not necessarily the primary endpoint, but one of the endpoints is a patient-centered outcome.
I think that's essential because if you're not asking the patient about direct experiences that they have had with whatever it is you're doing, then what are you doing?
You know, that matters.
I have colleagues who are writing about this.
A colleague of mine, Charlotte Huff, wrote a great story at Undark about the need to listen to cancer patients about the side effects of their treatments because we're not hearing what that is.
I mentioned before that we wouldn't have the RECOVER study in the first place if it weren't for the Long COVID community.
A lot of that's because of the patient-led research collaborative for Long COVID that started up.
I am glad to see this happening, and I'm glad to see that they opened it up.
I think you guys mentioned this when you gave me some preview documents and I looked at it.
They even discussed the quote-unquote post-vaccine syndrome, right?
The evidence for that is not very strong, but I'm glad that they are listening to that because I actually have my own issues with how we've dealt with the negative effects that can occur, even if very rarely, from the COVID vaccines.
I don't know if you guys did any looking back at some of my work, but one of the pieces I was proudest of was a piece I did at National Geographic about the fact that the compensation programs that exist in the United States For vaccine injuries, the very, very rare ones that happen, they do happen, and we have a compensation program, and yet, the people who are experiencing them from COVID vaccines are not getting that compensation.
And I mean, even the people who experienced, you know, the blood clots from the J&J vaccine, absolutely undeniable, it was caused by the vaccine, it was life-threatening, very, very, very rare, but it happened, and they haven't been compensated, and guess what?
Some of those people are now anti-vaxxers, and I don't blame them, you know?
Is it not the case that there's a separate kind of dispensation for that, that it's not included under the... That's the problem.
Yeah.
That's the problem.
Yeah.
There's the vaccine... We could go down a big rabbit hole here, but the bottom line is there's the Vaccine Injury Compensation Program and there's the Countermeasure Injury Compensation Program.
The former is a good system that is overburdened and does need an overhaul, but is a good system and has lots of money.
The CICP, the Countermeasure Program, does not have much money at all, is not a good system, was not designed for something that might have the number, like for example, people who lost time from work or school because of myocarditis, for example, which that's a pretty large population and it wasn't you know, the myocarditis that people have experienced
from the vaccine is not life threatening, as in some cases, the COVID impacts on the heart can be.
But it's, you know, there are athletes out there who lost a college scholarship
because they had developed myocarditis and they couldn't continue.
So, you know, it's still, it should be taken very seriously.
And I believe compensation is still due there and they're not seeing compensation.
That's a real problem.
And that's a real problem.
At the top of the show, we flagged on our intro that we've got kind of two approaches,
two angles that we're going to be pursuing as time goes on when we look at long COVID.
And, you know, our project begins and conspirituality explodes with the emergence of the virus.
And so, long COVID and the media and the politics and misinformation surrounding it is already kind of our beat.
But, you know, Julian, you and I have sort of different approaches here, and definitely in our conversations beforehand, we've been looking at different angles.
And maybe we can get Tara to weigh in on them.
We are doing a long COVID episode Because why?
Well, I mean, for me, initially, the emergent phenomenon of long COVID, as well as the growing body of social science and medical research data, underlines several important details, which is, you know, one of which is, no, this is not just a bad flu.
And yes, as it turns out, vaccination, for the most part, does offer important protections that extend beyond the unrealistic demands of perfect prevention of any infection, which a lot of, you know, anti-vax people will No true Scotsman!
Yeah, exactly.
The actual overall health dangers of COVID are much more significant than extremely rare adverse reactions to vaccines, even though we don't want to downplay those or, you know, dismiss them either.
In terms of the subcultures that we have studied over the last four years, I would predict that we're probably going to see many more cases of long COVID in red states, which had poor quarantine compliance during the first waves and had very low vaccination rates.
We're also probably going to see more conspiratorial and apocalyptic metaphysical misinformation that denies the emerging science for why these people are getting sick.
And that's also going to be part of how this thing is evolving, I would imagine.
And of course, socially and politically, all of this suffering will be disproportionately loaded onto those with pre-existing vulnerabilities, marginalized identities, or lack of material resources.
So Tara, all of that checks out, do you think?
Yeah, I agree with everything that Julian said.
I think everything he said is true.
And some of that we're already seeing.
There are people out there suffering from long COVID who are not suffering from long COVID.
Meaning, and I don't mean they don't have long COVID.
I mean, they don't think they have long COVID because you know, they never had COVID because COVID doesn't exist.
Right.
Yep.
You know, and that's, that is happening right now.
There are people who are living with the symptoms of long COVID who don't even seem cognizant of the fact that the symptoms they're experiencing were because they had this COVID infection.
Yeah, and I also see how people with long COVID are, will most likely be the same kind of, you know, targets as people who still wear masks, for example, like you and your family.
Yes.
Right.
That somehow this is, this is evidence of, of being cult programmed into like the fear mind virus or something.
Well, and you're already seeing that.
I mean, you see there's already sort of an us and them.
You see it on social media.
You saw it early on on Twitter, because a lot of the most vocal people who are frustrated at what I will call and what others have called the COVID minimalists or the COVID denialists, The people who are most frustrated at them, a lot of them are from the long COVID community.
And one thing that's interesting, I want to distinguish between the COVID denialists and the COVID minimizers because they're not the same.
The COVID denialists tend to be your more anti-vaccine pseudoscience people.
The COVID minimizers, a lot of them are in public health.
A lot of them are well-respected.
And they are also a problem.
They're the ones saying, yes, it was serious, but it's okay now.
We all take risks in our lives.
We all have to live.
Depression from isolation is a worse concern.
And they're not Outright wrong.
It's true that, you know, it's, we're not saying everyone should, you know, should hole up in their houses and never go anywhere.
But you know what?
People with long COVID right now have to hole up in their houses and not go anywhere because you're telling everybody else not to do that.
So it's, there's gotta be a balance and there's not a balance right now.
You know?
Yeah.
I am more worried actually about the minimizers who are sort of socially validated and have institutional positioners.
I am too.
I am too.
They're getting published in medical journals.
Yeah, and that really brings me to my more, a little bit forward or speculative interest in this, which is seeing long COVID as kind of an unfolding test case for institutional distrust or repair, possibly.
That, you know, this is a territory of medical suffering and mystery that impacts more women than men.
It will test the already frayed capacity for institutional trust.
And we know that trust in institutions provides a kind of resilience against conspiracy theories.
We know that the community that you're interacting with and that you're facilitating, you know,
publications with, and we'll talk about that in a moment, is extremely online, often confined
to their home, super motivated to find answers.
Does this sound like a population we're already familiar with?
And they have to adopt activist strategies for being heard.
And they will be influenced by other communities like MECFS, as we've said, and those communities will have varying levels of cynicism, Or grievance or skill in navigating care in the systems that we live with.
And these interactions and spaces can have really positive results, but things can also go off in a very alt-med, resentful, conspiratorial, and supplement-addled direction.
And so, I just think in general, this seems to be a proving ground for the viability and attractiveness of the conspiritualist claim that Medicine just in general is corrupt, cold-hearted, and profit-driven.
And that's, I think, what I worry most about.
I worry about that as well.
And I think, I'll probably come back to this later, I think a big part of that is That American culture gets exported to the rest of the world so much more effectively than any other culture.
And our culture also is the only major, um, high income and exporting our culture culture that has a for-profit healthcare system.
And I think that a for, I think a for-profit healthcare system is, I said there was no such thing as black and white, right?
Well, I'm going to go back on that.
Cause I, this is black and white for me.
Yep.
A for-profit healthcare system is unethical and immoral.
Full stop.
Full stop.
I'm not gonna, you know, no apologies there.
A capitalist version of a for-profit healthcare, it doesn't mean you can't have, I mean, lots of capitalist countries have non-for-profit healthcare systems, right?
I'm not anti-capitalism here.
I'm saying that a for-profit healthcare system does not serve patients.
And I think that That combined with everything you just said, Matthew, is part of why we're seeing that.
And then that gets exported, right?
Because these minimizers and these conspiratorialists and these denialists, they're not just in the United States.
In fact, some of the most vocal ones were in Germany and the UK, in fact.
A lot of what we saw here in the US was actually imported from the UK and Germany.
Including the money, by the way, a lot of the money, you know, the follow the money stuff that was going on, a lot of that money came from Europe as well.
So I'm not saying that, but you know, the fact that a lot of pharmaceutical companies are based in the United States, and I tell people when I write about vaccines, that I write about the evidence, but I'm not going to defend pharma to you ever, right?
Because I can give you a litany of abuses of pharma companies.
But what I do is I look at the evidence and I can say this company has done 15 immoral things and oh, by the way, this vaccine they made is really good and it works.
Yes, that might feel contradictory, but that's the reality, right?
You have to accept contradiction sometimes.
So, I do think that Long COVID has that potential, and I think one of the things that will help that are the initiatives like the Listen Project, right?
Because people in the Long COVID community need partners, and they've gotten partners with the MECFS community.
But they're also getting partners with researchers and you're seeing a lot of interaction between researchers and long COVID.
That's not something we've seen before with other conditions like this.
You didn't see that with ME-CFS early on.
You're starting to very, very, very slowly, but you did not see that for years.
You certainly didn't see it with Post Lyme disease sequelae, I will say.
I don't want to say chronic Lyme because there are definitely some, it gets tricky in there, but yeah, it's a very low term.
But there's no question that people can have long-term effects after having a Lyme infection.
And I think that the neglect of that for a long time allowed the festering of misinformation within that because people weren't getting the treatment.
With long COVID, you know, researchers, whether because of curiosity, whether because they've learned their lesson, whatever the reasons, they are partnering with these communities.
And that means that there's two-way education going on.
It means that patients are learning what the scientific process is and how it works and how things are assessed.
And I think that's a really positive development.
So, I have more hope With the long COVID sort of giant social experiment, then the failed non-experiments because they weren't experiments because we ignored them of past conditions.
It doesn't mean I have, you know, Pollyanna hope.
I mean, we can still fuck this up.
But I think there are, and I've also noticed a lot of self-policing in some of the long COVID groups.
The groups themselves want to be taken seriously.
I actually did a different story for National Geographic on tinnitus, or tinnitus, depending on how you pronounce it, and the potential link between developing tinnitus and a COVID vaccine, which is unproven and uncertain, but there's enough evidence to really be curious about it.
And frankly, the CDC is not pursuing it like they should be, in my opinion, based on looking at the evidence.
And those groups, when they formed, they were real cautious to weed out the anti-vaccine people.
They weren't necessarily anti-vaccine.
They were asking whether or not they should get another vaccine, but you know what?
Gregory Poland, who is one of the most respected vaccine voices in the field, who's the editor of Vaccine Journal, okay, who organizes the International Vaccine Conference every year, developed tinnitus after the after his COVID vaccine and was himself wondering,
should I get another vaccine or not?
Should I get the booster or not?
He did get the booster because he determined that the risk of the disease was greater,
but the self-policing is gonna help.
Well, it's really great that you actually know that story because it means that he disclosed it
and that is a level of transparency that's really essential.
Now, we're going to finish by asking about your project on Medium, but I just wanted to shout out to thank you for talking about the ideological export, because that is a real thing here in Canada.
Daniel Smith is running the province of Alberta on the template of Ron DeSantis.
And all of the for-profit minimization slash denialism is being sort of absorbed into this very low resistance environment in which public health services have consistently been degraded anyway.
So thank you for saying that.
That's absolutely true.
But yeah, let's ask Julian about the long COVID connection.
Yeah, so we've come the long way around from where we started to finally actually say that in August of last year, you created this project on Medium.
It's called Long COVID Connection.
You wrote there that even though Long COVID has been more quickly recognized in research than other long-term post-viral or post-bacterial syndromes, it was still enigmatic when you started in terms of many people not understanding or perhaps believing that it's real.
So, I just want to hear what your goal was in creating Long COVID Connection and how it's going.
Yeah, it's been hard.
Very, very hard.
I wanted it to have a mix of patient stories and experiences.
And researchers and or people experienced with backgrounds and research or journalists writing about some of the research that's there.
I have not been able to get as much of the latter.
I've gotten more of the former, which is okay, but I wish I could get more of the latter.
Part of that's because Medium itself is a platform that doesn't, you know, I can't pay anybody.
They can earn money by using sort of the partner program, but I can't offer money.
And so that's part of the reason I'm not able to get that.
But it's, it's been going, it's been picking up a little bit more recently, but it's been very hard going.
And part of that has been the people who are able to write for me are themselves living with long COVID.
So it's not like I can say, Hey, can you write me an article a week?
Like, you know, I can't do that.
Yeah, they're on what's known as Crip Time in disability studies, right?
Yep, yep.
Yeah, the world is rushing by, asking them to get back to work.
You want their stories, but you don't want to participate in that rat wheel process when they actually need to rest.
Exactly.
Yeah.
Well, Tara Haley, it's been fantastic having you here on Conspiratuality.
I imagine we will stay in touch with you and we might talk more when the story has continued evolving.
Yeah, thanks very much for having me.
This has been fun.
Thank you, Tara.
Thank you for listening to another episode of Conspirituality.
