Researchers and advocates are trying to change that.
Key points you should know:
- Long COVID, which has affected more than 400 million people around the world, is often underreported, particularly in low- and middle-income countries (LMICs).
- Some people with Long COVID are missed because of limited medical and public health resources, as well as a lack of guidance from governments and public health authorities.
- Other people with the disease choose not to come forward due to stigma, cultural norms, and socioeconomic barriers.
- Researchers and advocates are working together to raise awareness and encourage people to seek care so they can be properly diagnosed and counted.
Sourya Sidhhartha Dash, who is 42 and lives in Mumbai, India, was dismissed by many doctors when he began looking for Long COVID care in 2021. His persistent fatigue and spikes in heart rate were repeatedly written off as anxiety, deconditioning, or nothing at all.
Dash was undeterred. He’d read plenty of news stories and studies about Long COVID and had connected online with other people who’d developed the disease. He knew what he had. Still, it took almost 18 months of “relentless” self-advocacy to find a doctor who took his concerns seriously. “A lot of effort has gone into my journey,” he said.
Dash is lucky, relatively speaking. He got a diagnosis eventually, a milestone never reached by some of the 400 million other people around the world estimated to have been affected by Long COVID as of 2024. Research suggests many of those millions are slipping through the cracks. A 2025 study of 1.8 million London residents found that just 0.33% had a Long COVID diagnosis in their primary care records, despite previous government estimates that around 3% of the U.K. population has Long COVID.
And that’s in a wealthy country with a national health system. In low- and middle-income countries (LMICs), where Long COVID takes a disproportionately severe toll but has been called a “hidden public health crisis,” the problem seems to be even worse. Limited medical and public health resources, low awareness among providers, and socioeconomic barriers cause many Long COVID cases to go unreported in these settings, suggested a 2026 research review.
Globally, 36% of people with confirmed COVID-19 cases have been affected by Long COVID, a 2025 paper estimated. But uncertainty hides behind that number. In Africa, for example, it’s not even possible to confidently estimate Long COVID’s prevalence because so few studies have taken place there, the authors wrote.
“Forget about 2020. We are in 2026 and I personally know there are a lot of people who are suffering,” Dash said. “Even today in India,” he continued, “doctors do not recognize or want to talk about Long COVID.”
Global variation in Long COVID
Part of what makes Long COVID so challenging to diagnose, not only in LMICs but everywhere, is its diversity. Long COVID is not a single illness, but a disease state with more than 200 documented symptoms affecting nearly every major organ system. While major guidelines for the disease don’t require a diagnostic test and there are tests available for overlapping chronic diseases like dysautonomia, the varied presentations and lack of medical education on these overlapping diagnoses pose challenges for clinicians.
Symptoms even seem to differ by country, recent research suggests. Researchers behind LC-Optimize, a trial with sites in the U.S., the U.K., Canada, Brazil, and Zambia, have found geographic patterns in symptoms. In the U.S., the most commonly reported symptom cluster includes cognitive dysfunction and fatigue, compared to muscle and joint pain in Brazil and dizziness, headache, and joint pain in Zambia. “There is a tremendous amount of heterogeneity and it is related to symptom clusters, it is related to geography, it is related to variants of concern” that were circulating at various times and places, LC-Optimize investigator Douglas Fraser said during a webinar last spring.
An international study published in Frontiers in Human Neuroscience in January also found geographical differences in symptoms, though these differences may have been influenced by the study’s methods. Among people with neurological Long COVID who hadn’t been hospitalized, 86% in the U.S. reported cognitive dysfunction, compared to roughly 62% in Colombia and Nigeria and about 15% in India.
“We could see that there were similarities but also differences in those different geographic areas,” said study author Igor Koralnik, chief of neuroinfectious disease and global neurology at the Northwestern University Feinberg School of Medicine. “The main differences were about cognitive symptoms and mental health symptoms.”
Differences in viral strains or other biological factors may be partial explanations. But Koralnik has a different one: In countries where there are fewer healthcare providers and stronger stigmas around mental and cognitive health, people may not realize that their cognitive symptoms may be related to COVID-19 — or may choose not to discuss them.
“People don’t like to talk about it,” Koralnik said.
It’s also possible that limitations in the study’s design artificially widened gaps among countries, a commentary accompanying the paper noted. People in the study may have had varying levels of familiarity with Western phrases like “brain fog” used in assessments, potentially leading people outside the U.S. to underreport those symptoms. Plus, the American study participants predominantly sought specialized care for lingering neurological symptoms, while those in other countries were approached by researchers based on their medical histories.
Those who voluntarily searched for care may have had more intense symptoms, or at least more awareness of and motivation to treat them.
How stigma perpetuates Long COVID underreporting
Still, other studies have also found that people in wealthy countries are more likely to report chronic symptoms after COVID-19 than those in LMICs. Such findings suggest it’s not only health system failures that prevent people from receiving Long COVID diagnoses. Some people may not come forward for care at all.
That’s true around the globe, but people in LMICs may have uniquely significant obstacles to surmount. In Kenya, for example, a 2025 study found that some people are hesitant to seek Long COVID care because they do not want to be mistaken for having HIV. In India, meanwhile, some people stay quiet because they’re afraid of jeopardizing their careers, marriage prospects, or social standing, concluded a 2025 report by the Patient-Led Research Collaborative, on which Dash was a coauthor.
Mlindeni Gabela, who is 42 and developed Long COVID and myalgic encephalomyelitis (ME) after a 2020 case of COVID-19, sees many similar issues in South Africa, where he lives. “Some people have symptoms,” Gabela said, “but they don’t want to accept it” because admitting to a chronic illness means spending money they don’t have and dealing with the indignities of a healthcare system that routinely gaslights and dismisses people with Long COVID.
“Even my mother … doesn’t want to accept that she might suffer Long COVID because she saw what happened to me with my sickness,” said Gabela. He lost his job following his infection and now spends most of his time at home. “Everyone is so scared to be sick like me.”
Gabela said that’s a particularly prevalent fear among Black men in South Africa, many of whom subscribe to an “old-school culture way of being a man.” Many people in South Africa’s Black community feel that “even if you are sick, you need to be strong and work for your family,” he said. It’s very rare for men with Long COVID to visit South Africa’s public health clinics, Gabela said; if possible, they prefer to pay for private doctors to avoid attracting attention.
Even my mother … doesn’t want to accept that she might suffer Long COVID because she saw what happened to me with my sickness. … Everyone is so scared to be sick like me.
Mlindeni Gabela, Long COVID advocate in south africa
Encouraging awareness, acceptance, and diagnosis of Long COVID
Gabela, like advocates in many other countries, tries to chip away at these harmful cultural narratives by speaking publicly about his illness, not only in the media but also in community settings like churches and healthcare clinics where he can reach people directly.
In some cases, these grassroots efforts fill a void left by a lack of clear, consistent messaging from governments, medical societies, and health systems.
Some public education efforts do continue. In early 2026, for example, the World Health Organization’s European office published a campaign meant to dispel common myths about Long COVID, such as the idea that it’s equivalent to being “a bit tired.” Even that campaign, however, did not explicitly state that Long COVID can come with lifelong effects and that recovery remains rare, instead noting that cases have persisted for “up to five years.”
In an email to The Sick Times, a WHO representative said that language “should not be interpreted as a fixed upper limit for symptom duration. Rather, it was included to underscore that Long COVID can be a long‑lasting and potentially chronic condition for some individuals, countering the misconception that symptoms typically resolve within a short time frame.” The agency “continues to monitor emerging evidence as our understanding of Long COVID evolves,” the representative added.
Six years after the pandemic was first declared, such campaigns are few and far between, creating an information vacuum for patients and providers alike. “Most of the governments were excited, even by the middle of 2021, to say that COVID is over,” Dash said. “In that scenario, for a doctor to stick their neck out and say, ‘No, no, no, the impact of COVID is continuing,’ it’s difficult.”
Nisreen Alwan, a professor of public health at the U.K.’s University of Southampton who has been affected by Long COVID herself, is among the researchers trying to bridge the patient–health system divide.
Recognizing that Long COVID has many different symptoms, some of them not widely known, Alwan and her colleagues developed a free online evaluation tool, accessible across the world, that’s meant to help people figure out if their health problems could be related to Long COVID. The tool also offers suggestions for talking about Long COVID with healthcare providers and loved ones. “The tool was mainly to do two things: to try and encourage people to access care, but also to raise awareness about stigma,” Alwan said.
Alwan has also helped develop resources for healthcare providers that coach them about how to handle consultations with patients who may have Long COVID. Standard medical education does not provide robust training related to infection-associated chronic conditions like Long COVID and ME, a problem that ME advocates have fought for years to correct.
Other research teams are also trying to foster awareness among providers around the globe in hopes of improving patient experiences and keeping people from slipping through the cracks.
Project ECHO virtually connects healthcare providers from different countries to create networks of shared expertise. Its Long COVID–focused programming, produced in partnership with the nonprofit Schmidt Initiative for Long COVID (SILC), includes a series of multilingual webinars meant to help providers in LMICs learn about best practices in Long COVID diagnosis and management. SILC also coordinates weekly Zoom sessions that connect Long COVID specialists from nine locations to primary care providers in 82 countries.
Efforts to educate doctors are critical, Dash said. Patient awareness goes only so far; the healthcare system needs to rise to the challenge, too, or else people will have no motivation to come forward. “We are not treating [Long COVID] with as much seriousness as we should be treating it,” he said. “And when that doesn’t happen, then people don’t open up.”
We are not treating [Long COVID] with as much seriousness as we should be treating it. And when that doesn’t happen, then people don’t open up.
Sourya Sidhhartha Dash, Long COVID advocate in India
Jamie Ducharme is a freelance journalist specializing in health and science reporting. Her coverage of Long COVID won an award from the New York Press Club.
Editor’s note: The Sick Times has received support from the Schmidt Initiative for Long COVID. Our newsroom operates independently of financial supporters.
All articles by The Sick Times are available for other outlets to republish free of charge. We request that you credit us and link back to our website.
More international stories
- Long COVID is significantly underreported across the globe
- Austin recognizes Long COVID Awareness Day, events happen around the world
- Despite Long COVID’s ongoing impact, research in Colombia is limited
- “Medically neglected” and “structurally erased”: International network appeals for ME advocate Nevra Elis
