Last month, the National Institutes of Health announced a $1 billion four-year study to research so-called “long COVID.”
Dr. Anthony Fauci said in a White House press briefing last month: “The symptoms of this include fatigue, shortness of breath, sleep disorders, fevers, GI symptoms, anxiety and depression, and what some have been referring to as brain fog. And they may persist for months, and can range from mild annoying to actually quite incapacitating.”
Dr. Fauci cited other research from the University of Washington that looked at the long-term effects of COVID-19. It found that 30% of the patients enrolled in that study reported persistent symptoms as long as nine months after contracting the disease.
KCRW talks about the study and impacts of long-haul coronavirus cases with University of Washington epidemiologist Dr. Denise McCulloch; long-haul COVID-19 patient and Body Politic founder Fiona Lowenstein; and health care administrator and long-haul COVID-19 patient Cliff Morrison.
Morrison spoke to KCRW last year about his long-haul experience. He says he’s still experiencing remnants of the illness today, and doesn’t remember much of the time period between April to June 2020 when he was seriously ill and out of work.
“I didn't realize until after I'd come back to work in June that I didn't have a memory of that time. And now when people jog my memory or say they spoke to me or that we had interacted, some things come back, but some things don't. It's been an extremely challenging year for me,” Morrison says.
He adds that he’s learning to live with this. “I'm learning to go slowly, to not be in a rush. To be careful about bending over because I get dizzy and feel like I'm gonna pass out when I feel that I have shortness of breath.”
The variety in long-haul symptoms
Lowenstein says she contracted the virus on March 13 and was hospitalized sooner after. At 26 years old with no major pre-existing conditions, she says she was shocked at the severity of the symptoms, and new ones cropped up once she left the hospital. They included extreme fatigue and debilitating flu symptoms during her menstrual cycle.
“I started to actually develop new symptoms when I got home. First it was GI [gastrointestinal] issues, and I thought, ‘Is this food poisoning from the hospital?’ Then I started to develop very intense sinus pain and a runny nose and a sore throat, which I hadn't had before,” she says. “These symptoms went on and on. I had dermatological issues, brain fog and short term memory loss, rashes and hives.”
She points out that she received treatment due to her financial privilege and ability to stop working for three months. She acknowledges that others aren’t as lucky to take that time off.
“I think it's important, obviously, that we make clear that being diagnosed with a long-term illness or disability is not a death sentence, that there's a lot of ableism in our society that plays into feeling like it's impossible to to live with such a condition. And that has a lot to do with the way our society is structured,” she says. “And the disability benefits system in its current form has not been accessible to most long COVID patients, because it requires that you prove that your condition is going to impair your ability to work for 12 months or more. Most of us have only been sick for about 12 months.”
Lowenstein says she’s met other patients who have been diagnosed with chronic fatigue syndrome, myalgic encephalomyelitis, and dysautonomia. Another patient she met is in her 30s and is going blind.
Age doesn’t matter — long-term symptoms can occur in anyone
McCulloch says what was surprising to her team is that long-term symptoms appear in healthy, young people just like it did in older individuals. They also appeared among people who were hospitalized and those who were not.
“So I think we were really struck by how common this is and how it can occur in people whose initial illness was not that severe,” she says.
So far, it’s unclear what type of treatment might work to best address long-haul COVID-19 patients, but McCulloch says it might have to be personalized to each individual.
It’s also unclear whether age has any impact on recovery times for long-haul patients, she adds.
The next major public health crisis?
In a New York Times op-ed, Lowenstein says long-term COVID-19 cases might be the next major health crisis as the patient population continues to grow. That’s due in part to how debilitating symptoms can be.
“It impacts your friendships and your ability to sustain relationships, while in both physical and social isolation. It impacts your ability to make money and support your family. It impacts your future. I mean, we're talking about young people who got sick and aren't getting better. I know a lot of folks who have had to completely pivot their careers.”
According to McCulloch, there’s no evidence that proves whether or not the vaccine can ease long-term symptoms. She says that is something a future cohort of long-haul patients will be asked.