COVID-19 'long-haulers' don't want to be forgotten as the U.S. goes 'back to normal'

More than two years into the pandemic, those living with "long COVID," medically known as post-acute sequelae of SARS-CoV-2, remain sick and forced to grapple with a "new normal." Even people who had a “mild” version of COVID-19 and weren’t hospitalized are still experiencing symptoms.

It has remained a perplexing problem for the medical community — and an exasperating one for millions of Americans who are left in limbo, their personal and professional identities stolen from them, not feeling like the same people they were pre-COVID.

According to federal estimates, between 7.7 million and 23 million people in the U.S. may already have long COVID. A nonprofit research and advocacy group called the Solve Long Covid Initiative also found that due to long COVID, there has been an estimated $386 billion in lost wages, savings and medical bills.

What is long COVID?

Prominent public health groups like the World Health Organization and the U.S. Centers for Disease Control and Prevention have different definitions for long COVID.

“I think about long COVID as symptoms that didn't exist before somebody had COVID, and then came into being when they were sick with COVID, or shortly thereafter, and have persisted for usually a few months,” Dr. Michael Peluso, an assistant professor of medicine at the University of California, San Francisco, told Yahoo News.

What are the symptoms of long COVID?

There can be more than 200 symptoms spanning 10 organ systems associated with long COVID, according to a 2021 study published in the Lancet’s eClinical Medicine Journal.

Peluso thinks about the myriad symptoms from head to toe. “Some people experience neurological symptoms like headaches or trouble concentrating. Other people experience heart and lung symptoms, like shortness of breath, cough, chest pain. Other people experience gastrointestinal symptoms like nausea or diarrhea.”

Then there are other pain-based symptoms that don’t necessarily show up in a lab or on imaging tests. “Medicine is really good at measuring things that are really wrong. In my opinion, a lot of the symptoms that people experience with long COVID could actually be quite subtle,” Peluso said. “These symptoms aren't just there and kind of easily ignored. They often really affect how people live their lives.”

Do we know what causes long COVID?

At this point, no. But there are a lot of different ideas about who could be at risk, he said.

Who is at most risk for developing long COVID?

Anyone who has had COVID is at risk of developing long COVID. But there are certain risk factors that could make a person more likely to develop lasting symptoms, according to Peluso:

• Women are more likely than men to develop long COVID.

• People who were sicker during the early COVID infection (including people who needed to be hospitalized and those who didn’t but were still very sick at home).

• The number of symptoms a person has during the first few weeks of COVID can indicate whether they develop persistent symptoms.

• Underlying medical problems can increase a person’s chance for developing long COVID (such as diabetes and obesity).

And then there are biological factors that might come into play, according to Peluso. (He notes that the science is changing quickly and this is not a complete list.)

• General inflammation post-COVID: “People's immune systems get really revved up. And it's possible that some of that inflammation persists for a long time after somebody has COVID,” he said.

• Inflammation compartmentalized in certain organs: “The COVID virus gets into all of our different organ systems. And pieces of the virus can be found in their brain and their lungs, GI tract, all over,” said Peluso. “It's a seed there that the immune system can then go after. And so a person might develop inflammation in those specific tissues.”

• Clotting: “People who are quite sick with acute COVID in the first few weeks often develop blood clots. And there's some thought that people who are even less sick can still have these micro clots in their different organs and tissues,” he said. “It's possible that it sets off a cascade of events that causes long COVID symptoms.”

• Autoimmunity: “When a person is sick with COVID, they develop antibodies against the COVID virus. But they also develop all of these other antibodies because their immune system is kind of going haywire,” according to Peluso. “It's possible that some of those antibodies, instead of attacking the virus, might attack a person's own self tissues and cause persistent symptoms.”

• Reactivation of other viruses: Other viruses we get early in our lives can stick around, usually not doing much. “There's some recent data that suggests that people who go on to develop long COVID have reactivation of the Epstein-Barr virus early on in their infection,” said Peluso. (Epstein-Barr virus is one of the most common human viruses that can cause infectious mononucleosis, or “mono.”) “It's hard to know whether that's actually causing long COVID because that happens often in people who are just sick.”

• The realities of long COVID

Long COVID has been a “traumatic change” for Mary Snipes of Kansas. An otherwise healthy woman in her early 50s, she was previously active in her community, campaigning against gun violence ever since she lost her son, Felix, to a shooting in 2018. Snipes caught COVID-19 in December 2020 and nearly died of the virus after being hospitalized for two weeks. “I remember the doctors and nurses asking me, 'Should we resuscitate?' And I started crying because I had never been asked that before,” she recalled.

Snipes never ended up on a ventilator, but was sent home with oxygen. More than a year later, she still remains on oxygen and experiences a multitude of symptoms, from joint pain and forgetfulness to hair loss. Snipes said this is the first time she has ever had a whole team of doctors. “I basically feel sometimes that I'm a lab rat, that I'm being used [for] research, because nobody knows what to expect.”

For Joe Farina in upstate New York, long COVID has stolen his identity. In March 2020, he was about to turn 50, in excellent health as a competitive athlete and former boxer and as a worker in the hospitality industry. Then he caught COVID. It first appeared as a bad cold, but within a week he had to be hospitalized. Farina was never intubated, but recalled, “It was really one of the most terrifying experiences I've ever been through.” He has since suffered from lasting cardiac and neurological issues and takes several medications to manage all of it.

Two years in with long COVID, Ed Hornick, a Yahoo News editorial senior manager in New York, has done his own research, coordinated his own care and has still had to adjust his definition of what “better” means for him.

Weeks before Hornick experienced the telltale signs of COVID-19 in January 2020 in London, he was on a trip to Iceland and had the energy and oxygen capability to traipse all across the country and hike waterfalls. But weeks later, he was hospitalized and diagnosed with an upper respiratory infection and heart inflammation, only to find out later that it was COVID-19.

To this day, he said he still struggles to walk up and down the stairs and experiences electric shocks in his legs and tremors in his left hand. Hornick said one of the most frustrating things is that with long COVID, “there's no treatment, there's no cure, there's no ‘thing’ you can do to get rid of it.” Hornick faces a brutal reality in wondering, “Maybe my better is being at 70% instead of my previous life where I was at 100%, and it's having to adjust and having to get used to this new life that you have.”

“My life as I know it has been taken away,” said Marjorie Roberts. She contracted COVID-19 in March 2020 while managing a hospital gift shop in Atlanta. Before she caught COVID, she and her husband were preparing for semi-retirement. Roberts was planning on starting her business and enjoyed traveling. “Now, not only have I lost myself, I can't work.”

Like many long-haulers, Roberts said she experiences debilitating symptoms called COVID crashes where oxygen levels can drop, and dizziness or intense headaches can occur. And Roberts, who said she’s always smiling, had to have several teeth pulled due to the virus. She now works with a support group called COVID Survivors for Change, a nonpartisan nationwide community of people who have been directly affected by the illness, helping other survivors cope with trauma and loss.

And for Cathrine Solomon Williams, an outpatient nurse in New York City, she is one of many who experienced trauma and loss in 2020. She contracted COVID in March of that year, as did both her parents. While Williams was under quarantine, she lost them both within a span of two weeks. “So I think that was the worst part about this, is that I'm a nurse and I couldn't do anything to help them.”

Williams’s symptoms were unrelenting two months after her diagnosis. But like many long-haulers, Williams couldn’t afford to stay home and had to return to work while still suffering from extreme fatigue.

“People are losing their homes. They're having trouble paying for medication. They're having trouble putting food on the table, just the most basic necessities,” said Chris Kocher, executive director of COVID Survivors for Change. “[This] is why it's so important that we need additional government support right now for these folks.”

Where do COVID long-haulers go from here?

Peluso says that in terms of long COVID care, one of the first considerations is to talk to your primary care doctor to rule out any other easily identifiable conditions that could be treated and to ensure there isn’t another explanation for the symptoms a person is experiencing.

While long COVID clinics have been launched in the U.S., prolonged waits persist, and many of them require a laboratory-confirmed COVID diagnosis. This can be impossible for some who were sick in the spring of 2020, before tests were widely available, and never received their official positive COVID-19 result.

On April 5, the White House launched a national plan to be developed by the Department of Health and Human Services to expand research, care and disability services for people suffering with long COVID. The National Institutes of Health was also provided with $1.15 billion in federal funding to launch an effort called RECOVER to study this condition. (The University of California, San Francisco, the institution where Peluso works, is one of several taking part in the national study.) But it’s getting off to a slow start — as of March 2022, the NIH had recruited only 3% of the patients required for the study.

Meanwhile, Sen. Tim Kaine, D-Va., a long-hauler himself, introduced legislation in early March that would provide resources for people with long COVID and improve research.

Despite all these efforts, there’s still a lack of treatments that have been proven to help COVID-19 long-haulers. They remain frustrated, they’re losing hope, and they don’t want to be forgotten as the U.S. unmasks and moves on to restore some form of normalcy.

“The reality is, for millions of Americans, moving on is not an option. This is something that we need to stand up and support them on,” said Kocher.

“Long-haulers aren’t prepared to fight,” Farina said. “We need help.”