As the coronavirus pandemic rages on, researchers continue to unearth new information about COVID-19.  Yet many details are still murky, especially concerning recovery for people stricken by the virus.  Conventional wisdom has it that convalescents, who are a part of the vast majority that do not suffer the lethal extremities of the virus, recover and are no longer infectious after about two weeks.  However, this is not the full picture.

According to the C.D.C., as many as one in three COVID-19 patients who aren’t hospitalized experience long term illness—including fevers, extreme fatigue, and even sudden-onset diabetes—months after initial infection.  One such patient is Diana Berrent, a working mom from Port Washington.

In mid-March this year, Ms. Berrent was one of the first people in Port Washington to test positive for the coronavirus.  Ms. Berrent struggled at first to obtain a coronavirus test and make sense of the broad array of virus-related medical information.  To help disseminate the early information she gleaned during this experience, she chronicled each day of her coronavirus infection in a New York Post column entitled “Coronavirus Diary.”

Wishing to further leverage her daunting early encounter with the coronavirus to help others, in late March Ms. Berrent founded the Survivor Corps, a nationwide grassroots movement that connects COVID-19 patients and mobilizes them to participate in medical research efforts.  Months have now passed since its advent, and the organization has undergone meteoric growth; as of Sept. 6, it has amassed over 100,000 members who congregate on the Survivor Corps Facebook group to commiserate over their shared experiences. 

However, a different circumstance has been devilishly slow to change: Ms. Berrent has still yet to see a full abatement of her COVID-19 symptoms, which has been the case for hundreds of thousands of other Americans.  In late August on CNN’s The Lead with Jake Tapper, Ms. Berrent enumerated multiple burdensome symptoms that had lingered from her coronavirus infection months ago in March. 

“I am still having terrible gastrointestinal issues, massive headaches, what feels like a deep ear infection (but isn’t), and vision problems,” she said.  

On Sept. 3, Ms. Berrent confirmed in an update on CNN’s Cuomo Prime Time that her symptoms still persist.  

She added, though, that her experience “pales in comparison to what many Survivor Corps members are experiencing: neurological issues, tachycardia, things as dramatic as COVID-onset diabetes and lupus.”

What’s more is that most people lack a keen awareness of people with abiding COVID symptoms, or “Long Haulers.”  

“I never really thought about what the recovery of COVID survivors was like,” said junior Lela Pines.  

Since little is known about the long term impact of the virus, many people, including doctors, dismiss the symptoms under the pretext of unrelated diagnoses such as anxiety, when really patients are suffering physiological ramifications from the coronavirus.

“As a country we are tracking infections, hospitalizations, and morbidity, but most people who have COVID are actively told to stay home and not seek medical help unless they literally cannot breathe, in which case they should go to the E.R.  We are not tracking the experiences of those left to recover at home. Survivor Corps has thus tracked the experiences of these non-hospitalized COVID patients.  What we have started to see is that people were not recovering in the amount of time that you would expect,” said Ms. Berrent.  

In response to the lack of adequate information on the topic, the Survivor Corps commissioned a study with Indiana University on COVID-19 “Long Hauler” symptoms.  The research used only polling to identify a total of 98 long term COVID symptoms, including many not previously listed by the C.D.C., such as difficulty focusing, problems with sleeping or memory, vision issues, and hair loss.

Nevertheless, knowledge about “Long Haulers” is still staggeringly scant.  As awareness builds, we will hopefully see post-COVID care centers spring up around the country and doctors become more cognizant of long term symptoms.  In the meantime, people who suffer enduring coronavirus symptoms can do little but turn to each other for support and consolation, which is precisely what Diana Berrent’s Survivor Corps seeks to facilitate.