One of the main challenges the medical community faces when treating COVID-19 is the unpredictable nature of the disease and its symptoms in long-haulers, i.e., people for whom symptoms of the virus have become chronic, or ongoing.

In a “PBS News Hour” special, interviewer Stephanie Sy highlighted cases in which young, fit, healthy individuals—some even lifelong athletes—have had their lives turned upside-down by ongoing fallout from contracting the coronavirus.*

What symptoms are most common?

There is a wide range of symptoms that COVID-19 long-haulers are experiencing, which include:

• Ongoing acute shortness of breath 
• Loss of vision
• Dental issues 
• Vascular issues 
• Loss of mobility in their limbs

Firsthand patient experience

Diana Berrent, founder of Survivor Corps, an online community for COVID-19 survivors, appeared to be symptom-free for six to eight weeks. She thought she was completely recovered—then suddenly suffered severe gastrointestinal problems, extreme weight loss, and “COVID-onset glaucoma.”

Her 12-year-old son, who’d had a mild case of COVID-19, had also seemed to recover fully, until the day he was lying on the sofa watching TV and one of his adult teeth spontaneously fell out with no blood loss. When Berrent posted about the incident in the Survivor Corps group, she discovered that her son’s experience was by no means unusual in the community.

Doctors weigh in

Dr. William Li, a vascular biologist and CEO, president, and medical director at the Angiogenesis Foundation, said that the serious complications being caused by long COVID have vascular, autoimmune, inflammatory, and neurological components, and much is still unknown.

“This is a situation where doctors need to listen to patients who are bringing their symptoms to teach us, as a medical community, what’s actually happening,” said Li. “It’s the exact opposite of what normally happens, where doctors are telling the patients.”

New symptoms and frequency of vascular damage

New long COVID symptoms are being documented on an ongoing basis, so the terrain keeps changing. “Doctors have more questions than answers about this medical mystery,” said Sy. Her statement was echoed by a provider at a recent two-day virtual conference run by the National Institutes of Health (NIH). “We are flying a little bit blind here,” an anonymous male panel member said. “We’re not exactly sure what we’re looking for.”

According to Dr. Li, much of the damage they’re seeing is linked with vascular damage from the loss and restructuring of lung tissue caused by the disease. Some of the resulting complications have been continuous, and others have appeared suddenly. It’s important that patients continue to report new symptoms to their healthcare providers.

“There are tens of millions of people who are COVID survivors who might be carrying this vascular damage in their bodies with them going forward,” said Li, “and we can’t leave those people behind.”

*Sy, S. (2021, Jan. 13). Medical Community Scrambles to Understand COVID-19 ‘Long Haulers’. PBS News Hour. [Video Interview/Documentary with Transcript] https://www.pbs.org/newshour/show/medical-community-scrambles-to-understand-covid-19-long-haulers 

Much about the novel coronavirus, i.e., COVID-19, is still not fully understood. As research progresses and our knowledge of the virus increases, information can change rapidly. We strive to update all of our articles as quickly as possible, but there may occasionally be some lag between scientific developments and our revisions.