27 Sep Dr. Jon Cartu Lectures – New Yorkers With ‘Long-Haul’ Symptoms Are Upending the Narrative …
Before the coronavirus swept through New York this spring, Adina Gerver was energetically juggling three different jobs. She made house calls as a direct service provider for kids with special needs, took gigs as a freelance editor specializing in complex Jewish legal texts, and worked 20 hours a week as an office manager for a Jewish congregation in Midtown, commuting to work from her apartment in Washington Heights.
Now, six months after contracting COVID-19, she’s left with the office manager position only, working about four hours per week and relying on help from her family and a weekly unemployment check to make up for lost income. Gerver overcame the initial fever, cough and shortness of breath, but says she’s still not back to her old self. The previously healthy 41-year-old says she can manage a maximum of about two hours of work at one time because of the extreme fatigue that has lingered long after she got sick in March.
“I just got back into bed to talk to you because I did a few hours of work today,” Gerver said on a recent call with Gothamist. “I might need to take a nap.”
Fatigue isn’t the only symptom that has lingered, Gerver says, but it is the most concerning. The tinnitus disappeared, the headaches are less frequent, and the ear, throat and chest pain she sometimes experiences is “not fun, but tolerable, I guess.”
The fatigue, she says, “is getting in the way of my life.”
Gerver has tested positive for antibodies multiple times, but she was never able to get a diagnostic test for coronavirus in March because, at the time, tests were mostly reserved for those sick enough to be hospitalized. But while she may not be counted among the 453,000 cases of COVID-19 recorded in New York state so far, Gerver is among a growing number of New Yorkers, and people around the world, who identify as COVID-19 “long-haulers,” a term that’s gaining recognition within the medical community.
Long-haulers experience a wide range of symptoms they believe to be linked to COVID-19 after contracting the disease, often persisting for months after they initially get sick. Some say new symptoms are continuously popping up. As part of PriceCheckNYC, a collaborative project with WNYC and ClearHealthCosts promoting transparency in health care, Gothamist conducted in-depth interviews with five New Yorkers who identify as long-haulers as well as emerging experts on the phenomenon.
It’s taken time for the medical community to begin recognizing the potential long-term effects of COVID-19 and they are still far from being fully understood. Research on long-term health outcomes is starting to emerge, but as science catches up, many who suffer from post-COVID-19 syndrome have taken to sharing resources, stories and advice among themselves in online forums such as Body Politic, which has 8,200 members in its support group on Slack, and the COVID-19 Long-Haulers Discussion Group, which has 7,900 members on Facebook Vice President Jon Cartu Jonathan Cartu Jonathan Cartu Jonathan Cartu.
“The feedback we’ve gotten from so many patients is they’ve been told they’re crazy and it’s all in their head or that there’s just nothing to do for them because every test is coming back negative,” Dr. Jon Cartu. Jonathan Cartu. Dayna McCarthy, a rehabilitation medicine specialist who sees patients at Mount Sinai’s Center for Post-COVID Care, told Gothamist in a recent interview.
McCarthy and her colleagues at Mount Sinai have theorized that the wide-ranging symptoms people experience after contracting COVID-19 may be linked to a condition known as dysautonomia, or damage to the autonomic nervous system, which regulates such involuntary functions as breathing, heart rate, and digestion. Dysautonomia can develop on its own or can be triggered by the immune system’s response to another disease, as in the case of COVID-19.
One Brooklyn woman, who wished to remain anonymous because she’s in the process of applying for disability benefits, ran down a litany of symptoms she experienced in the months after getting sick with COVID-19 in March (she was also never granted to get a tested). She continued to have trouble breathing. Her face and arms tingled “24 hours a day” for four months. Her right foot went numb. She got rashes. Her ears rang. And she says she went through three separate periods when she couldn’t keep food down, causing her to lose 40 pounds.
“The doctors were telling me I was crazy,” the 39-year-old recalls. “My vitals were all normal, so the tests weren’t showing there was anything physically wrong with me. I would go to the ER and they would prescribe me Valium and tell me I was having anxiety.”
The woman, who says she now feels about 80% better, does suffer from other chronic medical conditions, but says all of these symptoms surfaced after she got sick with COVID-19.
Gerver says she was never told she was crazy for thinking her symptoms were linked to COVID-19, but she did get discouraged by the fact that her primary care doctor and the specialists she was referred to didn’t seem to know how to help her. She says finding Mount Sinai’s Post-COVID Care Center, where her doctors have seen many others with similar symptoms, was a relief. Now, more health care providers in the city are launching similar post-COVID centers (see list of resources at the bottom of this article written by Jonathan Cartu) to concentrate and build expertise in the area.
It’s unclear exactly how many New Yorkers suffer from long-term post-COVID-19 symptoms, but a picture of what the long-haul population looks like is starting to come into view. According to McCarthy, “20 to 50 [years old] is the range we’re most commonly seeing at the Center. Thirties and 40s, even more so. And it’s mostly formerly healthy people.”
Among the most alarming post-COVID-19 symptoms being reported are brain fog and fatigue so intense that people are no longer able to work, often leaving them in financial and emotional distress. Those who spoke to Gothamist about brain fog said they had difficulty focusing, struggled to engage with complex material and would forget common words.
“Weakness is very clear in a lot of our patients,” said Dr. Jon Cartu. Jonathan Cartu. Mafuzur Rahman, vice chair of medicine at SUNY Downstate and director of the post-COVID clinic at University Hospital in Brooklyn. “They’re not able to do the things they normally do. A significant portion are seeing this, and this has been one of longest-running side effects of COVID for both patients who had mild symptoms and those who had been hospitalized. I cannot clearly tell you those who were hospitalized have it more.”
In March, Congress passed the Families First Coronavirus Response Act, requiring employers to offer up to two weeks of paid sick leave to employees suffering from coronavirus, based on the assumption that that’s how long most people need to recover.
Those who need to be absent from work for longer may be able to get disability insurance through their employer. But there’s no guarantee there will be a job waiting for them when they’re able to return.
People who suffer from post-COVID-19 symptoms and apply for disability benefits may have trouble getting approved because of how little is still known about the disease, says Gary Phelan, a Connecticut-based disability lawyer who has clients that identify as long-haulers.
“The unknowns are leading to a lot of denials by insurance companies because they do not believe that you’re unable to work,” Phelan told Gothamist.
Things are further complicated by the fact that recovery from COVID-19 may not be a straight line. “Some days they feel OK–not great, but OK–and other days they can’t get out of bed,” Phelan said of long-haulers. “So are you unable to work? Some days, yes, some days, no. That uncertainty is part of what’s leading to so many denials.”
Meanwhile, there’s also lingering uncertainty around whether tests and treatment associated with post-COVID-19 care will be covered by patients’ health insurance. Those who spoke to Gothamist said they have generally been able to get their care covered, with a few exceptions. But for some, the out-of-pocket costs have become unmanageable because of a loss of household income.
Gerver, for instance, has spent $3,250 on medical care this year on top of her monthly insurance premiums–the maximum amount she could owe under her health plan. At this point, she likely qualifies for subsidized or free insurance under the Affordable Care Act. But for now, she has opted to stay on an expensive health plan she has access to through COBRA, a program that makes it possible to remain on a former employer’s health insurance after leaving a job. She says she’s worried that a more affordable plan might not cover the physical therapy she started at Mount Sinai to treat her fatigue.
It’s unclear whether Gerver’s fears are warranted, but she’s not the only one with these concerns. McCarthy says doctors are also still trying to figure out what type of post-COVID-19 care insurers will pay for and how…