Why is Long COVID so underreported worldwide?
Hosts Miles Griffis and Betsy Ladyzhets speak with health journalist Jamie Ducharme about why Long COVID is dramatically underreported globally, and hear from South African advocate Mlindeni Gabela about fighting for diagnosis and breaking stigma in his community.
Subscribe to Still Here wherever you get your podcasts, and leave us a review telling us what you think of this episode.
Spotify
Apple Podcasts
PocketCasts
Amazon Music
iHeartRadio
RSSLinks mentioned:
- Read Jamie’s story, Long COVID is significantly underreported across the globe.
- Follow Mlindeni’s work on Instagram, ME Long COVID Unite SA
Jump to a specific part of the transcript:
Intro
[00:00:00]
Melanie Marich: Welcome to Still Here, A Long COVID News and Commentary podcast from The Sick Times.
In this episode, how are Long COVID cases going underreported around the world?
Jamie Ducharme: Nobody’s doing a perfect job, to say the least. There’s a lot of room for improvement everywhere.
Miles Griffis: I am Miles Griffis.
Betsy Ladyzhets: And I’m Betsy Ladyzhets. We are 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 the [00:00:30] Long COVID crisis.
Betsy Ladyzhets: But here at The Sick Times, we are bringing you the latest news and commentary that matters to the Long COVID community
Miles Griffis: without pandemic, denial, minimizing, or gaslighting.
Melanie Marich: 400 million. That’s one estimate of how many people around the world have been impacted by Long COVID. It’s from a 2024 study from Nature Medicine. This number is an estimate, and it’s likely that it’s changed in [00:01:00] the last two years, but it’s a pretty stark number to sit with. You’d think that with 400 million people around the world experiencing this disease, we’d hear about it more, but that’s part of the problem.
Only a small portion of those 400 million people have received a formal diagnosis, and there’s lots of reasons for that.
To learn more about why, we spoke to Jamie Ducharme. She’s a health and science reporter who wrote a piece for The Sick Times about how Long COVID is going significantly under [00:01:30] reported around the world. She spoke to people about their experiences and dug into the numbers to ask how and why this is happening.
Jamie spoke to Miles and Betsy about her reporting. Here’s that conversation.
Interview with Jamie Ducharme
Miles Griffis: Jamie, so yeah, a number we cite a lot, and I think that is cited a lot in Long COVID reporting, states that they’re an estimated 400 million people affected by Long COVID, but these official [00:02:00] numbers don’t quite stack up to that, and it’s been two years since that came out.
Can you tell us a little bit more about, uh, why that might be?
Jamie Ducharme: Yeah, so the 400 million number that is thrown around all the time is really an estimate based on what we know about Long COVID prevalence, who it affects how often, but it’s not necessarily drawn from actual diagnostic records.
That doesn’t mean that 400 million people around the world have actually formally been diagnosed with Long COVID.
There are numerous barriers to care that [00:02:30] can prevent people from getting an official diagnosis. Um, some people it takes years to get diagnosed. Some never get diagnosed at all. Um, so many, many people fall through the cracks and are not officially counted in tallies of Long COVID.
Miles Griffis: Okay. Yeah. So one stat that I found really uh, just compelling in your story, and I think speaks to a lot of the under-diagnosis, um, just around the world, uh, came from a UK study where they looked at, you know, the people who have been diagnosed with [00:03:00] Long COVID compared to sort of what we think the, the estimates are.
Would you mind talking a little bit about that study and what it, it found?
Jamie Ducharme: Yes, so this was a really fascinating study. It looked at more than a million patients, um, or I should say more than a million people all living in London, and found that only about 0.33% of that sample actually had a diagnosis of Long COVID in their primary healthcare records. And that’s really striking because previous government estimates from the UK have [00:03:30] have estimated that somewhere around 3% of the UK population is living with Long COVID.
So that suggests that many people are going undiagnosed, not only in a wealthy country, but in a country that has a nationalized healthcare system where you would hope that, you know, if anywhere is getting this right, you would hope that it would be the UK and even there, Long COVID is hugely underdiagnosed, which suggests that the problem is probably even worse
pretty much everywhere else in the world.
Betsy Ladyzhets: Yeah, I mean we also [00:04:00] published a story last year about, uh, a lot of Long COVID clinics in the UK closing because of like changes in funding from the NHS. So even, even in a country that you would expect to be relatively better resource for this sort of stuff, it’s like Long COVID is not the priority.
Jamie Ducharme: Yeah. Nobody’s doing a perfect job, to say
the least. There’s a lot of room for improvement everywhere.
Betsy Ladyzhets: Yeah, so in in your story, you know, you cite a few papers that have kind of different estimates and [00:04:30] also show how. The relationship between an initial SARS-CoV2 infection and developing Long COVID can maybe differ by region or by country. So could you talk a little bit more about what we kind of know from the research so far and why there might be regional differences?
Jamie Ducharme: Yeah, there have been many
studies that try to pin down exactly how many people who have COVID-19 go on to then develop Long COVID. Um, and they’ve come to quite a few different answers. So, recent data out of the us, um, specifically [00:05:00] out of the US CDC suggests that somewhere around. 7% of people in the US are currently living with Long COVID, but then there was a paper published last year that reviewed many other previously published studies that estimated somewhere around 36% of people globally, or I should say 36% of people around the world who have had COVID-19, have some experience with Long COVID symptoms.
So clearly there’s a wide range. Um, part of the difficulty in estimating true global prevalence is that studies are conducted [00:05:30] primarily in, in wealthy countries. Many low and middle income countries just are under researched. We don’t have a good understanding of how Long COVID affects people there, and that makes it very difficult to come to reliable estimates of global prevalence.
one thing that I would just mention is that Long COVID is so diverse as, as we all know, it’s not one disease. It’s something that has more than [00:06:00] 200 symptoms can affect virtually every organ system in the body. It can look very, very different from one person to the next. And that’s challenging in so many ways.
It can make it difficult for physicians or other healthcare professionals to identify it correctly. It can make it hard for people to self-identify and even realize that what they’re dealing with could be Long COVID. Um, and it can make it really difficult, uh, to kind of connect patients because if one person’s having a really different [00:06:30] experience than another, maybe they’re not as.
Um, as likely to, to seek out each other’s experiences for moral support. So I think it’s just really important to keep in mind that this is a super diverse condition. It’s very complex. Um, but everybody, wherever they might fall on the spectrum of symptoms or severity deserves good healthcare.
Miles Griffis: So you spoke with a lot of [00:07:00] people, um, in these low and middle income countries. Can you tell us a little bit about, uh, their experiences in either getting diagnosed with Long COVID or, uh, seeing it on the ground in their countries?
Jamie Ducharme: Absolutely. I spoke with a man Surya Dash, who lives in India, and he told me that it took 18 months of really relentless self-advocacy and self effort to get aLong COVID diagnosis. And that’s remarkable for anyone with any health condition, but for somebody with Long COVID, for whom every [00:07:30] doctor’s appointment can be hugely taxing, it’s just really striking that it took 18 months of repeated appointments to get a clinician to take him seriously.
I mean, people told him he had anxiety, that he was out of shape, that it was all in his head, and it took more than a year for somebody to finally say, yes, we agree. You have Long COVID. Let’s try to get you some care.
And unfortunately that is far from an exception. A lot of people in countries around the world, wealthy, low income, whatever, have that [00:08:00] experience, but it is particularly prevalent in low and middle income countries where health systems may not have as many resources.
There may not be as many providers. Period. Um, and there may not be as many providers who have a good working understanding of Long COVID and can accurately identify when it is present and help people, you know, get connected to resources that can help ’em.
Betsy Ladyzhets: Yeah, no, I think your story really demonstrates how, like this is an issue everywhere, but. [00:08:30] even more so in these countries where there’s very little awareness or medical education or just like public understanding of Long COVID. another thing that you talk about the piece based on one recent paper is there might be differences in Long COVID symptoms, uh, between regions or between countries.
So I’m curious if you could talk about that a little bit more.
Jamie Ducharme: Yeah, there have been a few studies in recent years that look at what Long COVID actually looks like in different places around the world.
Um, one of
those which [00:09:00] I discussed in the story, is a study that found huge differences in the percentage of Long COVID patients. In, um, the US and in other wealthy countries who report cognitive dysfunction relative to those in lower income countries.
So I believe the numbers were 86% of the Long COVID patients in the us. Included in the study said they’ve experienced, um, cognitive dysfunction compared to about 15% in India, which obviously that’s a huge difference. Very striking. The researchers behind the [00:09:30] paper said. Possibly there’s, you know, some biological component or some effect of being infected by different, um, viral variants.
But more likely it’s cultural. It’s the fact that people in the US you know, feel empowered to say when they’re experiencing cognitive health problems and feel confident that they can find a provider to address that, whereas somebody in India might feel. You know, so much stigma or so much cultural resistance that they don’t even want to come forward, or they don’t think that [00:10:00] if they do come forward, they’ll find anybody to help them.
there were a few limitations to that study. Um, a big one being that the patients in the US were people who had presented for Long COVID care and specifically neurological Long COVID care. So that obviously suggests that they were aware of their symptoms, they were motivated to treat them, et cetera.
people in some of the other countries included in the study such as Columbia, Nigeria, India, were people who had been recruited from the community based on their medical records, [00:10:30] but who had not necessarily, you know, self presented for neurological care.
So there could be some important differences just in the people who participated in the study as well as in some of the tools that were used. Um, to assess ’em. So even something like using the phrase brain fog, which is common in western countries, but less so elsewhere, could skew the results of who says they have those symptoms.
Miles Griffis: Jamie, so you were talking a little bit about some of these barriers and one of those big [00:11:00] barriers is, uh, stigma. What sort of did you see when you talked with folks about this? We see so much stigma, um, in the us. Um, what’s it like in other places around the world and what sort of factors contribute to people not talking about or seeking diagnoses for Long COVID?
Jamie Ducharme: Stigma, as you said, is a, a factor everywhere, but especially in some low and middle income countries where there might be kind of unique cultural factors that, [00:11:30] that we don’t see as much in countries like the us. So one really interesting study that I found is out of Kenya, um, and reported that there people may choose not to come forward for Long COVID care because they’re afraid of being mistaken as having HIV.
Um, in India, there’s a report cited in the study, or excuse me, cited in the story that found that people choose not to come forward because they think it will jeopardize their chances of getting married.
So there are a variety of ways that stigma can show up. Um, and it, it’s a really sad [00:12:00] situation because it’s not just that people.
You know, aren’t getting the care that they need, it’s that they’re not even choosing to pursue that care, which I think is a huge sign that we as a global health community, need to do better at serving people when they do come forward.
Betsy Ladyzhets: Yeah. And in the story you also talk about some advocates as well as researchers who are trying to bring more awareness to Long COVID and trying to address this huge global concern of people knowing [00:12:30] about it or not feeling, uh, comfortable coming forward or seeking healthcare. What are some of the, those kind of examples that you found or those resources or efforts that you would want to share?
Jamie Ducharme: Yeah, I think one of the most encouraging things is that there are a lot of people who are aware of this problem and actively working to solve it. Um, so there are a number of programs, project Echo being one, um, that work to connect providers.
All across the world to share best practices and lessons that they’ve learned and expertise on Long [00:13:00] COVID diagnosis and care.
Um, so that when patients do come forward, doctors do a better job of diagnosing them correctly and hopefully treating them. One really interesting tool that I highlighted in the story, um, comes from researchers in the uk. And it, it’s from researchers in the uk, but available online everywhere. And it’s a free tool that people can use to kind of plug in the symptoms that they’re dealing with and assess whether those might be related to Long COVID.
And then the interesting [00:13:30] part is that once they do that assessment, the tool also kind of helps. Guide them through, if this is Long COVID, here’s how you might wanna talk about it with your physician, or Here’s how you might wanna tell your friends and family. And that’s really important because it’s addressing kind of both problems at once.
It’s helping people recognize that what they’re dealing with might be Long COVID and coaching them through, you know, how to deal with some of that stigma and, and get the care that they [00:14:00] need.
Um, I found a lot of really great examples of people with Long COVID taking matters into their own hands and kind of creating digital communities, um, where they can trade not only.
You know, moral support and kind of validation that what they’re experiencing is real, but also tips on how to manage symptoms or how to talk to their doctors in ways that are, you know, get them to pay attention and are effective. And so I think that’s really encouraging as well. I mean, people should not have to take on that role for themselves.
You would hope that health systems and governments are [00:14:30] doing this work. Um, but it is nice to see that it, that at least those communities are making a real difference in people’s lives.
Mlindeni Gabela’s story
Melanie Marich: To get another perspective on this conversation, we reached out to someone. Jamie interviewed Mlindeni Gabela from the Western Cape of South Africa.
Mlindeni Gabela: I remember the first time when I, I was still at work when I got sick. First time when I got having COVID
I was the first [00:15:00] one who came out and talk about it.
Melanie Marich: Mlindeni caught COVID in March, 2020. By the time he got sick, three other people at his company had already tested positive for COVID, but Mlindeni was the first to disclose his status. According to him, other people chose to hide their COVID infections.
Mlindeni Gabela: Even if when I came, I came back. Then I remember when I’ve been going to the clinic, when the doctor of the [00:15:30] company, um, she assumed that I have Long COVID. When I explained to my colleagues about Long COVID, I tried to Google what is Long COVID.
Then they just said, you have a white, uh, illness that’s not for black people. Like we in South Africa, there’s sicknesses, like we rationalize the sicknesses, like when we have certain, uh, disease [00:16:00] or illness, then they, they’ll say, it is for black, this is for white people, but that’s not true.
Melanie Marich: Race plays a major role in the public health conversation in South Africa as it does around the world. Marginalization impacts who seeks care, how they seek it, and whether or not they get it from Mlindeni. He’s experienced a lot of stigma as a black man from within his own community.
Mlindeni Gabela: I always said as a man, it’s difficult [00:16:30] when you come, you come out with that and some people will just say, you need to be, keep quiet because you’ll embarrass your family or you make your kids to be a life laughing stock at school that your Father’s weak is, is is always wanting to talk about, um.
This illness, like he is, he needs help or he needs, he is begging people to help him. Then those are the things that [00:17:00] I’ve been told of the people they’ve been saying to me. But because I know what I wanted to achieve or what I wanted to, to, to achieve in, in, in, in our country or in our black community.
Because people are dying because of the stigma. They don’t want to come out. Then, as I said in one of the articles the other day, that [00:17:30] is taboo to to be sick as a black man because you need to be masculine. You need to be strong.
Melanie Marich: These days, Mlindeni is an organizer and a Long COVID ambassador working to spread awareness and break stigma for the disease.
Mlindeni Gabela: I try to get, um, to do awareness in churches, to do talk with community leaders, organization, disabled organizations, [00:18:00] but sometimes it fails because there’s a lot that is needed and. Beside that, if you don’t have funds to do things, it, it, it, it makes you feel like you, it’s taking long because whenever you want to, to work, giving people who wants to volunteer, they not getting, uh, motivated to be appreciated for, for the [00:18:30] work that they’re doing.
But it’s a, it’s something that. I want to do it whether there’s manual or not, but being struggling with, with, with, with transportation petrol and there’s a places where you can’t just use a public transport ’cause there’s too much crime.
Then crime is too much and because of poverty [00:19:00] and a lot of people are not working, then it’s, it’s hard for me to, to, to, to motivate people. And telling them that some medication you need to buy from the pharmacy, some other things that they can help you, you need to buy it from, uh, from the, from the pharmacies.
That is expensive. That is why people they try to ignore, even if they just know that they’re sick, [00:19:30] they don’t want to lose work, they don’t want to stay at home. They’d rather die at work Than to focus on helping themself with their health. Then it’s what we are struggling with because people are pushing themselves going to work.
Melanie Marich: There’s a lot of odds stacked against Mlindeni and other people with Long COVID. In South Africa, admitting to having a chronic illness like Long COVID means spending money you might not have [00:20:00] in a healthcare system ill-equipped to help you.
Mlindeni Gabela: I want the world to know in South Africa the experience that I have with Long COVID, it’s like has taken all my life, has stole my life, stole my papers, even though now being sick, I found the papers, purples, but [00:20:30] everything that I used to do. It takes all things. It is so disheartening that there are a lot of things that I can do.
Sometimes it gets emotional. Even if I’m with my kids, I can’t be playful with my kid. That needs to, to. To be careful of what I’m doing. Even if we can go to the zoo and going walking around [00:21:00] the zoo, then I need to rest in between.
We struggle whether you black or white, we struggling. We we facing same thing. People are losing houses, people are losing cars. People are losing things that they work hard for. People are selling stuff to survive. That’s one of the painful things, the stories that we. We shared last year on sick Onik pride.
It was so [00:21:30] scary and sometimes I feel my story much better than the other one. But we still facing the same thing, the same pain, the same depression, same mental break breakdown. We we struggling.
Melanie Marich: To read more about Mlindeni and others like him, check out the story on our website. Link will be in the show notes.
Outro
Betsy Ladyzhets: That’s all for this week’s episode.
Miles Griffis: In the meantime, we’ll continue reporting the information that [00:22:00] 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 Mechanical Orchestra’s rendition of Which Side. Are You on Originally by Florence Reese. I’m Melanie Marich and I produce this episode. Our engagement editor is Heather Hogan. Sophie Dimitriou designed our podcast cover Art. [00:22:30] And Miles Griffis and Betsy Ladyzhets are your co-hosts and The Sick Times co-founders.
Thanks for listening.
More podcast episodes
- “People are dying because of the stigma”: Long COVID’s global underreporting problem
- “The Way Disabled People Love Each Other”: In conversation with Leah Lakshmi Piepzna-Samarsinha
- What is the federal government currently doing about Long COVID?
- Long COVID Awareness Day 2026: Inside the growing organizing efforts to recognize the disease
