Understanding the signs and symptoms of long COVID
Delaware’s COVID Public Health Emergency ends on May 11.
Many public officials, including President Joe Biden, say the pandemic is over. But in its wake, there’s an ongoing reminder of the damage it caused – long COVID, a disease that medical professionals are still trying to understand and treat.
Delaware Public Media’s Rachel Sawicki takes a closer look this week at the effects of long COVID and how it's being addressed.
“I was very healthy before I got COVID,” says long COVID patient Faith Newton. “I swam half a mile every other day, I walked two miles, I could bike 20 to 25 miles on the weekends, like I was in really good shape, so it was a shock that I got this sick.”
Newton is one of the over 28% of Delawareans that report long-COVID symptoms according to the National Center for Health Statistics. Delaware ranks 17th in the nation for patients experiencing long-COVID.
But Dr. Sarah Schenck, medical director of Virtualist Medicine for ChristianaCare's Center for Virtual Health, notes cases like Newton’s are only what is reported and it is likely that there is underreporting in every state.
“We have patients who weren't even aware they had COVID,” Schenck says. “Either they didn’t have access to a test or it was a false negative, and they go on to develop long-COVID symptoms. It doesn’t mean, just because they never had a positive COVID test that they can’t have long-COVID.”
Schenck defines long COVID as COVID patients who go on to develop new symptoms or have lingering symptoms at least 4 weeks after an acute infection.
Schenck says it is more likely for unvaccinated patients and those who had severe COVID and were hospitalized to develop long-COVID symptoms, but it can happen to anyone, even people who were asymptomatic, or didn’t know they had COVID in the first place.
“It’s like you got the flu 24/7. You can’t remember what you did 20 minutes ago. And you can’t remember simple things like 3 times 4 is 12, or you can’t recall certain words.”Faith Newton, long COVID patient
As for what long-COVID looks like in patients – what they know so far is it can affect any system in the body.
“So it can affect the lungs and cause respiratory issues like troubling breathing or cough, it can affect the brain and that’s how it causes brain fog, trouble thinking o processing, trouble finding words, trouble with short-term memory, trouble with multitasking, that’s actually a complaint that we hear not uncommonly in our clinic, patients who are used to always multitasking really have trouble with that,” Schenck says.
What they’re learning now is how long COVID affects those systems. Schenck says the most common symptoms are fatigue, brain fog, and exercise tolerance.
“Going up and down a flight of stairs may cause issues with breathing or the heart beating fast or feeling kind of dizzy,” she says.
She adds that issues with smell and taste, sleep disorders, depression, and anxiety are also on the long list of signs.
Newton is experiencing just about every symptom that Schenck lists, plus hair and weight loss.
She started developing those symptoms in May 2022 and has been sick ever since – despite completing her initial vaccine series and receiving two booster shots.
She’s no stranger to these symptoms. Her son has Myalgic Encephalomyelitis – more widely known as Chronic Fatigue Syndrome and called ME/CFS – which is closely related with long-COVID symptoms.
When she first got sick, Newton says fatigue was her worst symptom. She slept nearly 18 hours every day, and it hasn’t gotten much better. She also has severe brain fog.
“It’s like you got the flu 24/7,” Newton says. “You can’t remember what you did 20 minutes ago. And you can’t remember simple things like 3 times 4 is 12, or you can’t recall certain words.”
She has also drastically changed her diet to dairy-free, gluten-free, and low-histamine.
“You put leftovers in the refrigerator and they grow histamines,” Newton says. “And in my case, I get the doggone hives the next day.”
She visits the COVID clinic at Johns Hopkins Hospital in Baltimore and is currently seeking a second opinion at Philadelphia’s Thomas Jefferson University Hospital on her stomach issues. She’s losing about 2 pounds a week and is severely dehydrated, so she sits at ChristianaCare’s infusion center twice a week for four to five hours a day to replace those lost fluids.
Newton is a professor of education at Delaware State University, and often teaches virtually, which she says is still stressful.
“Everything that I do costs energy,” Newton says. “Then I have to recover that energy somehow. And then I can’t overuse that energy. It has upended my entire life. It has been unbelievable.”
She is part of a long-haulers support group at Johns Hopkins and a group for people with ME/CFS who have also accepted people with long-COVID who have developed ME/CFS symptoms. She says a lot of people join these groups to seek guidance on how to deal with their symptoms.
“And a lot of people, they don’t know what to do with the depression and anxiety, and don’t know it’s a side effect of long-COVID, and for whatever reason, their doctors are not educating them on that,” Newton says. “Our group will tell them they need to go see their doctor and see if they need to be on some kind of anti-anxiety or anti-depressant.”
“The public health officials are kind of posturing towards, ‘the pandemic is over.' That’s very much not in alignment with what I’m experiencing with the need out there that people have after they get a COVID infection.”Andrew Wylam, President of Pandemic Patients
Charonda Johnson can attest that support groups are essential for people with long-COVID. She’s the Strategic Partnerhsip manager for COVID Survivors for Change, a national nonprofit that started as a support group for people who lost friends and family to COVID, but over time developed into a resource for people with long-COVID.
“Unfortunately, I don't think most of America is talking about this, or is even really concerned or aware that this could potentially affect lots of people,” Johnson says. “And in particular, lots of people that have long-covid.”
Johnson’s father caught COVID leading worship in church in July 2020, and was dead in less than a month. She connected with Survivors for Change to share her story, and has since dedicated herself to advocacy and awareness.
“We try to kind of unify in, ‘how do we support people who are affected by long COVID?’” she says. “Because there is no calvary coming to save them. We are the Calvary.”
Johnson emphasizes that support groups should not replace real medical professionals and their advice, but they do provide a sounding board for those struggling.
Andrew Wylam is the President of Pandemic Patients, a nonprofit patient advocacy organization founded in May 2021. Wylam has a background in law and has a pandemic legal assistance network that provides pro bono legal services to people affected by COVID. Wylam says they’ve taken a close focus on the intersection between long COVID, disability, and employment.
“That is the real epicenter of where this issue is continuing to explode in this country, where people get COVID and they may recover or they may stay sick, whatever path they go on, but at some point, they find that their symptoms are so disabling that they have to stop working or they find that they can’t work anymore the way that they are used to,” Wylam says.
In 2021, the Department of Health and Human Services and the Department of Justice put out guidance as to when long-COVID is a disability – typically, when symptoms become so severe that they limit one or more of your major life activities.
“If someone says, ‘Oh I have long COVID and I’m tired,’ or ‘I have some brain fog,’ it’s like, that’s on the spectrum of maybe not disabling under the law,” Wylam says. “But when you get to the point where someone has difficulty breathing or difficulty walking or difficulty driving because they have severe nausea and vertigo, that is what can push them over the line towards being a disability under federal law.”
According to a survey by the FDA that Pandemic Patients is helping to collect data for, post-exertional symptom exacerbation is extremely common – when someone can push themselves in the moment but will later crash, and are often bed-bound for days, and experience cognitive impairment like focus and communication.
But Wylam says employers are sometimes skeptical – there is no test for long-COVID.
“The public health officials are kind of posturing towards, ‘the pandemic is over,’” Wylam says. “That’s very much not in alignment with what I’m experiencing with the need out there that people have after they get a COVID infection.”
Johnson says that’s where support groups can also help – identifying those who still have needs and who are getting left behind when the health emergency is declared over.
She says more than 1.1 million people have died and that 81% of Americans know someone who has been hospitalized or died from COVID.
“And we tried to put those numbers in terms that people could really think about,” Johnson says. “What that looks like, that means 1000 people died every single day. That’s one person dying every 80 seconds in America.”
Johnson herself is dealing with long-COVID now. She says at first, she didn’t realize that things like vision and balance issues were symptoms of long-COVID, until someone else revealed they were having the same issues.
“We don’t know what the long-term effects are five, 10, 20 years out, it hasn’t been around long enough for us to know that. So I think that is on the horizon.”Dr. Sarah Schenck, medical director of Virtualist Medicine for ChristianaCare's Center for Virtual Health
“People who had long-COVID specifically, it wasn’t my doctors, it was other patients who had long-COVID who were telling me ‘these are the things you need to do to advocate for yourself,’” she says.
Schenck says the biggest question still unanswered is just how long is long-COVID?
“We don’t know what the long-term effects are five, 10, 20 years out, it hasn’t been around long enough for us to know that,” Schenck says. “So I think that is on the horizon.”
She says the clinical team at ChristianaCare’s Symptom Monitoring and Virtual Care Program try to treat the root of the symptoms, but there is no one answer to every patient’s problems.
And while they’ve treated more than 500 patients so far, she is sure there are more out there.
“I think it’s a lot of patients, but I think there’s a lot more out there that probably don’t know about this clinic,” Schenck says. “They don’t know how to find us, so I think we could be helping even more.”
And for those who get treatment - Schenck offers a glimmer of hope.
“Most of our patients get better,” she says.
An outcome Newton believes is in her future.
“I am a very positive person,” Newton says. “I will get well, it’s just a matter of finding the right clinician who knows how to deal with the issues that I have.”