Published in NJ.com
By Elizabeth Llorente | NJ Advance Media for NJ.com
Alicia Thompson-Overby never got better.
Eight months have passed since the first symptoms appeared. Fever. Chills. Severe headache. The Somerset woman was 33 weeks pregnant and just days from her first scheduled COVID-19 vaccine dose when she tested positive for the coronavirus.
Thompson-Overby’s life would soon be unrecognizable.
The speech-language pathologist was admitted to Robert Wood Johnson University Hospital, battling pneumonia and a rapid heart rate for nine days as a machine helped her breathe. In the middle of it, she gave birth to her son, Cairo, who was seven weeks premature.
A week after her discharge from the New Brunswick hospital, a harrowing set of new symptoms emerged. Extreme fatigue. Shortness of breath. Muscle and joint pain. There were also occasional headaches, sensitivity to light, memory problems and difficulty coming up with words.
The textbook case of long COVID remains so crippling, Thompson-Overby, 32, has been unable to work. Her schedule is now consumed by a whirlwind of appointments with pulmonary specialists, a neurologist, a cardiologist, a sleep specialist, a nephrologist and physical and occupational therapists.
“I was surprised that even though I did not have any pre-existing health conditions, the virus still impacted me in a severe, life-changing way,” she said, sounding exasperated.
Health experts around New Jersey are sounding the alarm over long COVID — the collection of vague and mysterious symptoms that often upend patients’ lives long after a coronavirus infection, costing many their jobs and robbing them of their quality of life.
While the nation tries to move past the pandemic after two wrenching years and 1 million American deaths, public health officials worry long-hauler syndrome remains neglected even as new cases soar and existing ones like Thompson-Overby’s persist for months and even years.
A growing chorus of experts has labeled the often debilitating condition “the pandemic after the pandemic,” a crisis all its own that will linger long after the coronavirus fades into endemicity. They wonder who will treat all the long-haulers even as they search for a diagnostic test, proven treatments and the true scope of the chronic syndrome.
“There’s an iceberg ahead that we don’t see,” said Dr. Edward McManus, an infectious disease consultant at Saint Clare’s Health, a Morris County-based health system. “It’s underappreciated that there are some things — like long COVID — that are short of hospitalization and death that could be awful. Getting long COVID can be very compromising.”
Yet long-hauler syndrome remains in the shadow of the pandemic, despite unraveling the lives of as many as one third of the people who contract COVID-19.
That means potentially 600,000 New Jersey residents and roughly 24 million Americans have developed symptoms such as brain fog, fatigue, anxiety, rapid heartbeat and shortness of breath, which can range from draining but manageable to life-altering.
“It’s a very disabling illness,” McManus said.
Health officials worry those numbers are actually an undercount. Some patients’ symptoms go misdiagnosed. Other cases are heedlessly dismissed by health providers. And still others continue to go unrecorded because of the spike in at-home tests and a lack of medical care in underserved communities.
Meanwhile, only 40% of long COVID patients have gotten better, some experts say.
It is a major public health threat — with no end in sight.
“There isn’t enough information about it. Nobody is really talking enough about it,” McManus said. “Primary care physicians may not be diagnosing it because they haven’t seen it before. It’s a new diagnosis.”
Like many people, Thompson-Overby had not heard of long COVID until it overwhelmed her. She had been in good health before contracting the coronavirus and decided to get vaccinated in her third trimester after discussing the matter repeatedly with her doctor.
Thompson-Overby has been so incapacitated, her husband Vance — who like Cairo, tested negative for the coronavirus — had to take an extended leave from work to care for her, the baby and their 3-year-old daughter Zaria. The family believes Zaria — who was asymptomatic — was infected in school and brought the virus home, testing positive after her mom fell ill.
“Long COVID symptoms have affected my life in many ways,” said Thompson-Overby, who is now fully vaccinated.
A Medical Riddle
Even Dr. Sabiha Hussain thought her patients would be better by now.
Long COVID took over many of their lives in the first months of the pandemic. And it still won’t let them go.
“Some patients in our program are two years out from their infection and are still having symptoms,” said Hussain, who leads the Robert Wood Johnson University Hospital Post-COVID Recovery Program, established in January 2021. “When we started this, we thought after two years, people would have a resolution of their symptoms.”
It’s just one of a multitude of mysteries surrounding long COVID, also known as long-hauler syndrome, post-acute COVID and post-acute sequelae of SARS CoV-2 infection (PASC).
It’s a medical riddle that has left even infectious disease experts probing for answers.
There are no official figures detailing just how many New Jersey residents are suffering from the little-understood condition. Not from the state. Or the federal government.
There is no test for long COVID. There are no proven treatments. Experts don’t know what causes it or even have a uniform definition universally recognized by experts.
Meanwhile, long-hauler cases are mounting, experts say, as those infected in December and January during the omicron wave are now exhibiting symptoms.
The winter surge of the highly transmissible variant sent COVID-19 case rates to the highest levels of the pandemic. Omicron drove up the segment of adults who have been infected with the virus to nearly 60% by the end of February from 34% in early December, according to the Centers for Disease Control and Prevention.
That could mean an avalanche of new long COVID cases in the weeks to come.
About 90 new patients were being treated at the RWJ Barnabas Health Medical Group’s Post COVID-19 CARE Program between January and March — nearly double the number seen during the same period in 2021.
“It’s a huge difference,” said Dr. Vanessa Trespalacios, who launched the program in October 2020 at Cooperman Barnabas Medical Center in Livingston. It has served about 400 adults. “We’re only now coming out from that omicron phase. I’m concerned about what we might see.”
The condition’s crippling effects on so many Americans prompted its inclusion last year as a disability under the Americans with Disabilities Act.
“We don’t appreciate how significant that class of illness, being defined as long COVID, will be” on both individuals and society at-large, McManus said.
It makes the lack of reliable data on the syndrome all the more concerning.
“Honestly, we don’t even have great estimates of who has COVID” itself, said Stephanie Silvera, an infectious disease specialist at Montclair State University. “A lot of testing at home is not being reported, and there are those who aren’t going for testing because they can’t be bothered. This problem will get worse before it gets better, and I’m talking about both COVID and long COVID.
“We’re just starting to transition from looking at COVID as an acute condition to understanding that it is a chronic condition.”
Long COVID experts fear the state and national health systems aren’t prepared for an onslaught of very sick patients requiring multidisciplinary care.
“If what we worry about regarding long COVID comes true, what care are they going to get? Where are they going to go for treatment?” McManus said. “Long COVID illness is so multidimensional, you may need to see several specialists. It’s going to be difficult to corral.”
The New Jersey Department of Health is “looking into the most effective ways of collecting long COVID data,” spokeswoman Donna Leusner told NJ Advance Media.
The state plans to partner with hospitals to establish long COVID clinics and obtain “a better picture of what the clinical manifestations are,” Health Commissioner Judith Persichilli testified May 3 in front of the state Senate Budget and Appropriations Committee.
Her department has also partnered with other health agencies — the CDC, New York State, New York City, Maine and Wisconsin — to study the phenomenon, asking COVID-19 patients diagnosed in 2020 to describe their symptoms in an electronic survey.
“The Department has received 1,100 responses and is working with CDC to submit results for publication,” Dr. Edward Lifshitz, the state’s communicable disease service medical director, told NJ Advance Media in a statement. “Learning more about long COVID is a part of our ongoing efforts to understand the impact of COVID-19 on individual and public health, both in the short and long-term.”
The federal government has taken steps to address long COVID amid criticism that it ignored the crisis to prioritize vaccines and treatments, such as monoclonal antibodies and antiviral pills.
In April, President Joe Biden ordered a sweeping federal initiative to provide best practices for treating the condition, insurance coverage for those affected by it and assurance that those debilitated by long COVID have a right to accommodations in the workplace.
Just four weeks earlier, former Democratic vice presidential nominee and current Virginia Sen. Tim Kaine — who contracted the coronavirus in 2020 and continues to suffer from long COVID — introduced the CARE for Long COVID Act. It calls for centralizing patient data and improving the national health care system’s response to the syndrome.
”There’s sufficient evidence to show that this is a potentially significant problem,” Silvera said, “and that we need to develop health care systems that can help people with a condition that really manifests across a broad spectrum of organs. We’re seeing an impact on the heart, kidneys and liver.”
Everyone’s at Risk
But health officials see no end in sight as the need for long COVID services accelerates.
New Jersey has more than a dozen treatment programs catering to a growing pool of patients.
“They run the full gamut,” said Dr. Angela Skrzynski, head of Virtua Health’s Care After Covid program, which has served more than 600 people since it launched in May 2021. “People can have an asymptomatic infection, or mild or severe. They might have been hospitalized, on a ventilator. No matter what, you’re at risk for having long COVID.”
The syndrome often bewilders those who had uneventful initial bouts with the coronavirus.
“A lot of them will say, in a surprised manner, ‘I’m having all these symptoms now, but my symptoms during COVID were so mild,’” Skrzynski said.
Both adults and children are susceptible — several programs have added pediatric post-COVID clinics. Hussain and Skrzynski have noticed women outnumber men in their adult programs.
While the cause of long COVID remains unknown, theories abound. Some believe remnants of the coronavirus linger in the body, causing disruptive inflammation. Others point to abnormal immune system responses, and still others think micro blood clots and nerve damage could be the cause.
Hussain, whose program at RWJ has served some 300 people, said about 40% of long COVID patients get better.
“Time helps some of the healing happen,” she said.
But the federal government warns the U.S. may see as many as 100 million new COVID-19 cases this fall and winter, meaning millions of potential long-hauler cases.
Long COVID patients often require several specialists, including mental health therapists since anxiety and depression are common symptoms.
Many with brain fog have improved through occupational therapy, learning new ways to approach “their day and manage their time,” Hussain said.
While many long-haulers find themselves in the grip of debilitating symptoms, their caregivers themselves are often overwhelmed.
“We have a lot of people whose families are disrupted, who many times can’t remember what they last said or did,” Hussain said. “Their caregivers are facing something they don’t know how to deal with.”
And some cases go unrecognized or treated for weeks or months, particularly if they develop what Hussain calls “soft symptoms.”
“They can be subtle. They can’t concentrate. They feel fatigue,” she said. “It’s not like having severe COVID, where you know the day, even the hour, you started feeling sick, when it hit you. Long COVID can be much more insidious.”
Just one more reason it remains in the shadows.