In the winter of 1948, people living in the Icelandic town of Akureyri became “mysteriously” sick after infections with an unknown pathogen. Their symptoms included fatigue, muscle pains, fever, memory loss, trouble sleeping, and increased heart rates — and symptoms got worse after “the slightest exertion,” according to a 1950 paper describing the outbreak. While scientists initially attributed the cases to polio, as some people suffered from paralysis, they later realized this was a new disease. A follow-up study, in 1956, found that symptoms “may persist for a long time.”
Scientists tried to understand this illness, calling it “Akureyri Disease” or “Iceland Disease.” But they were unable to identify a specific cause of infection or determine how a pathogen might have led to such varied symptoms. And this wasn’t the only “mysterious outbreak”: similar symptoms afflicted many other communities. One paper, describing cases near Washington, D.C. in 1953, notes that scientists had reported similar outbreaks “with increasing frequency” from countries around the world, but still fails to identify a cause.
This story likely sounds familiar to the millions of people now sick with Long Covid. Like the people in these historical records — and, almost certainly, like many others before scientists started noticing — pwLC have faced disbelief by doctors, incorrect diagnoses, and uncertainty about how an infectious disease could lead to long-term physical changes. Many pwLC have also learned, as I have as a reporter covering this disease, about the long history of infection-associated chronic conditions. Some cases, doctors later attribute to specific infections, like Lyme disease or Epstein-Barr virus, while others are harder to pin down, leading patients to diagnoses like ME/CFS.1
The story sounds familiar, but Long Covid is different: this time, the number of sick people is too big to ignore. People with Long Covid are making their voices heard everywhere from their doctors’ offices to the steps of the White House. Those of us who’ve been listening hear the calls to action — to research, to better healthcare, to collective support — and we hear a warning. If we don’t act now, this crisis will keep expanding.
More people will keep getting Covid-19 and Long Covid, yes. And also: Long Covid might be the biggest outbreak of chronic disease following infections that humanity has seen so far, but it likely won’t be the last one. Health experts have been warning us — since long before COVID came on the scene — that the warming planet would accelerate the spread of new infectious diseases. As the climate continues to change, pathogens will jump more readily from animals to humans and will travel more easily around the world, especially as geopolitical crises (which are also, often, tied to climate) intensify.
In past pitches and grant applications, I’ve made lists of the other infectious diseases to spread globally in recent years that carry potential long-term ramifications for the people they infect: from Ebola to mpox to the seasonal flu. It’s not hard to guess that the next pandemic we face may have similar consequences, even if it doesn’t reach the same scale as Covid-19. If our medical and public health institutions fail to understand how these diseases work and come up with solutions now, they are doomed to repeat their mistakes of the last three years when future pathogens hit.
When people ask me why I, as someone who doesn’t have Long Covid, am so dedicated to reporting on this crisis, I think about the long game. I see Long Covid and diseases like it as the biggest health issue of this decade, if not of this century. For the last three years, I’ve been on the frontlines of covering the acute pandemic: volunteering for the COVID Tracking Project, writing a data newsletter that was more reliable than the CDC’s, and investigating wrongdoing at government institutions from New York City’s health agency to the National Institutes of Health. It’s an easy choice for me to stay on the frontlines as the chronic pandemic continues.
I’m also dedicated to this topic because I’ve been listening to pwLC and to people with other infection-associated chronic conditions like ME/CFS, POTS, and MCAS.2 Many of them knew this current crisis was coming, and they know future crises are likely. But they also see an immense opportunity, a silver lining in the tragedy: Long Covid is too big to ignore.
This disease’s unmistakable mark on the workforce, on the healthcare system, and on so many other facets of society has already led to action, in the form of research grants and healthcare investments in far greater magnitude than diseases like Long Covid have been able to access before. Millions of pwLC are speaking up, leading research studies and calls for support. I’m inspired by the patient-led movement, though I try not to be too idealistic; I know real change will take years, billions of dollars, and significant shifts in how our healthcare and public health systems treat chronic diseases.
The Long Covid field isn’t new: diseases like this one have likely existed for as long as viruses and microbes have infected us. But it also is new: millions of people have documented symptoms after infections with one, specific pathogen, now one of the best-studied pathogens in the history of biology. If we can bring these two areas of inquiry together — learning from the past research, focusing on how SARS-CoV-2 specifically causes chronic symptoms — maybe we can find out how infection-associated chronic conditions happen. Maybe we can learn how to prevent them, treat them, cure them.
Miles and I decided on this title, The Sick Times, because we didn’t want to just cover Long Covid. We will cover all the chronic, complex, post-viral, post-pathogen, “mysterious” diseases of the past and future. We will cover these diseases through the context of science and health, of course, but also address their economic and cultural contexts, accountability for powerful institutions, day-to-day problems for people dealing with symptoms, and so much more.
If we’re successful, the world will be more prepared for the next chronic pandemic.
In solidarity,
Betsy Ladyzhets
- Thank you to Suzanne Vernon, research director at the Bateman Horne Center, who sent me the historical papers I’ve cited in this essay. ↩︎
- In addition, I feel connected to pwLC because I identify as disabled, due to a chronic condition I’ve had since childhood. But that’s a topic for another essay. ↩︎
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