This story is from The Pulse, a weekly health and science podcast.
Psychologist Leonard Jason knew the COVID long-haulers were coming long before anyone even had a name for them.
“When we began hearing about individuals getting sick with this particular virus, we just assumed that there would be a certain percentage of individuals who did not recover,” he said. “And they ended up calling them ‘long-haulers.’”
Jason directs the Center for Community Research at DePaul University in Chicago. He said it was no surprise that some subset of those infected with the new coronavirus just stayed sick because that kind of thing has always happened.
“So if you look at all the different viruses that have occurred … from the Spanish flu (of) 1918 to Ebola, … to SIRS, a certain percentage of people don’t recover,” Jason said. “That’s what we’re interested in: why is it that some people don’t recover from a wide different host of viruses that have occurred over the last hundred years?”
Jason works with a community suffering from a disease many experts believe has a viral trigger. It’s a baffling condition with a wide range of symptoms.
A relentless tiredness
“The fatigue is profound,” said Kim Carlson of Minneapolis. “It’s like wearing a suit of armor and the floor is a magnet.”
Justin Blonstein of California described a “brain fog, where it’s tough to put thoughts together.”
And Ann McDonald of St. Louis said, “It’s like being held to your bed with invisible straps, day in and day out.
They all were diagnosed with chronic fatigue syndrome, which is characterized by a relentless tiredness. The disease is also commonly known as myalgic encephalomyelitis, or ME/CFS.
“Having ME/CFS is like straining to walk through the deep end of the pool when you’re simply trying to get from your bed to the bathroom,” said McDonald.
“One of the most difficult aspects of daily life is monitoring how much gas I have in my tank as far as my energy reserves and trying not to over do it,” Carlson said.
If someone with this condition is too active for too long, they’ll crash hard and find themselves bed-bound. Carlson said she wears a Fitbit to keep track of how few steps she takes.
ME/CFS has long been linked to the Epstein Barr virus, which causes mononucleosis. But there’s no concrete test for ME/CFS, and there are dozens of other suspected causes. That speaks to maybe one of the toughest parts of having the disease — not being taken seriously.
“Being dismissed from doctors is soul-crushing,” McDonald said. Blonstein said doctors mostly greet him with “shoulder shrugs.”
That disbelief is how Jason, a psychologist, got involved with this community. When physicians don’t know what to do for a patient, they’ll sometimes suggest therapy.
Back in the day, instead of calling it chronic fatigue syndrome or myalgic encephalomyelitis, this condition was sometimes called “yuppie flu,” as in made-up nonsense.
“It’s easy for, you know, the health care worker to say, ‘Maybe you’re just depressed, maybe, you know, you just need to sleep better and you’ll get over this,’” Jason said. “‘And why not just take this antidepressant?’”
Under the radar
That attitude is part of the reason the condition got so little official attention.
“In 1991, myself and Judy Richmond, who’s a sociologist at the University of Illinois, Chicago, we sort of marveled at the fact that there were so few people identified with this illness by the CDC at the time,” Jason said.
The Centers for Disease Control and Prevention thought there were maybe 20,000 people with it in the United States. But at the time, one major ME/CFS support organization had more active members than that.
“And also 3,000 to 4,000 people every month were calling the CDC … trying to get information about this type of fatiguing illness,” Jason said. “So we thought that their estimate of less than 20,000 people was an underestimate.”
Which is a bit of an understatement.
He and his colleagues wanted to get a sense of the true prevalence. They screened a random sample of thousands of people from diverse ethnic and socioeconomic backgrounds, mostly over the phone. From that work, they estimated the true number to be 1 million to 1.5 million. Women were two to four times more likely to be diagnosed.
“And by the way, it turns out that individuals of color, black and individuals who are Latinx, actually are (at) higher rates,” Jason said.
Medical science doesn’t really understand this disease yet, but that doesn’t make it any less real for those who have it.
“You’ve got multiple different reasons for a person seeming to get sick. In some cases, they can’t find any reason,” Jason said. “They just slowly got worse over time, and then it’s harder to attribute it to something specific.”
Jason and his colleagues think some kind of attack on the brain is what causes ME/CFS.
In the case of viral infection, they think it could be linked to what’s known as a cytokine storm. You may have heard of it in COVID-19 patients — it’s basically an overreaction of the immune system that can start to damage and destroy tissues, causing harmful swelling, sometimes in the brain.
But it may also be that ME/CFS, or at least some cases of it, is caused by something else, something that isn’t on anyone’s radar.
“Unexplained illnesses, as these things are unfortunately, really consume a lot of health care dollars,” Jason said. “And I don’t know if you know, about 80% of lower back pain is unexplained. So a lot of people go to physicians — something like 20 to 25% of visits are for things like pain and fatigue — and many cases (are) unexplained.”
Hard-to-explain medical problems, he said, can often become easy-to-dismiss medical problems. That’s especially true when the weird cases trickle in here and there.
These people were invisible to the larger health care community, for one, because their symptoms were so strange and varied. And two, because there wasn’t one big cause that could tie all these patients together.
Now, with the pandemic, millions of people are getting the same virus, thousands of them are staying sick — and it’s happening all at once. Jason thinks that makes for a more clear pattern, one that’s hard to ignore.
“With COVID-19, you can see a very different case where … people had this particular illness and they got sick after it,” Jason said. “Well, with ME/CFS, you didn’t have everybody have, like, a virus like COVID that basically had an insult to their system of which they didn’t recover.”
The pandemic and its sudden onslaught of long-haulers unable to smell, or out of breath for months on end, may force a change.
They’ve ignited renewed investment in viral research that could end up helping those with ME/CFS. But Jason said the sheer visibility of long-haulers is invaluable.
“I think the fact, there’s so many thousands, hundreds of thousands of people who are sick, and who have had, you know, stellar careers and … they want to basically figure out what’s wrong,” Jason said. “You have that whole group that is … basically trying to get their voice heard. They won’t be silenced.”