Barbra Williams Cosentino
Ever since he contracted the coronavirus in mid-March, Jake Elsas, 53, has spent every waking moment feeling like he’s had the worst sleep of his life. The kind of sleep “where a person fitfully rolls around for hours and, once in temporary slumber, has nothing but anxiety dreams and nightmares. Tired and groggy and lethargic, the cobwebs in my head become an impermeable blanket. And that’s on a good day,” said Elsas, who lives in Atlanta.
On a not -so-good day, he experiences a complete meltdown. Elsas says the exhausting crash (also known as a flare or post-exertional malaise) is “brutal and terrifying.” He’s the executive director of a nonprofit art and history center.
On top of brain fog, Elsas suffers from what he describes as a “perfect storm of coughing, sweating and debilitating fatigue,” now accompanied by ringing in his ears, or tinnitus.
And he is one of the lucky ones. As sick as he was with COVID-19 , Elsas was never hospitalized, never on a ventilator, had no fever and had no trouble breathing, even at his worst.
Yet six months after falling ill, he still feels terrible.
Elsas is one of the so-called “long haulers,” also known as having “long COVID” or “post-COVID syndrome.” They experience persistent symptoms long after recovering from the acute phase, which often was relatively mild. Their recovery is erratic, with continuing and even new symptoms that fluctuate in intensity.
The Centers for Disease Control and Prevention (CDC) found that about a third of people with milder bouts of COVID-19 who hadn’t been hospitalized had prolonged illness and persistent symptoms for weeks after contracting the coronavirus. On his nightly cable show, CNN’s Chris Cuomo often talks of his own experience as a long hauler.
The COVID-19 “Long-Hauler” Symptoms Survey Report, conducted by Natalie Lampert at Indiana University School of Medicine, surveyed more than 1,500 people from the online support group Survivor Corps. The most common symptoms were severe fatigue, muscle or body aches and respiratory issues, including shortness of breath or chronic cough. Many also reported fever, chills, hair loss, racing heart, palpitations and other symptoms.
A May 2020 patient-led survey of 640 long haulers, done by the Body Politic COVID-19 Support Group, found that at the time of the survey, more than 90% had not yet fully recovered. Most of the respondents had not required hospitalization. The support group was started by journalist Fiona Lowenstein, a long hauler who contracted the virus in March at age 26.
A follow-up three months later found that the majority of individuals had symptoms 20 to 25 weeks after the initial illness. There was a surprising preponderance of neurological issues, with many experiencing “brain fog,” memory problems, headaches, insomnia and depression/anxiety.
Dr. Joan Bosco, a primary care physician at the Center for Post-COVID Care at Mount Sinai in New York City , found that in the patients she treated during a two-month period, fatigue was the number one presenting symptom, followed by shortness of breath, cognitive impairment, neuropathy (numbness/tingling), anxiety, nightmares and alterations in taste/smell.
Bosco notes that in the patients she has seen, “Age hasn’t seemed to factor into who will develop residual symptoms. I have seen previously healthy 20-year-olds who still can’t get out of bed, and 70-year-olds who are back to their regular workout routines.”
David Putrino, a neuroscientist at Mount Sinai Hospital, studied 1,400 long haulers and found the majority are women, with an average age of 44.