SAN DIEGO, Calif. — Throughout the pandemic, millions of people have felt relief after recovering from COVID-19, but for some, the feeling is short-lived as new symptoms appear or old ones linger.
Known as 'long COVID' or long hauler syndrome, patients are reporting a wide range of symptoms.
“I’ve had a lot of the long COVID symptoms. I’ve had some cardiac changes, I’ve had the rash, I’ve had shingles for six weeks, which kept moving and changing, it was very strange. I had nerve pain,” said Delainne Bond.
While she never got tested for COVID-19, Bond believes she contracted the virus last February. She and her husband came down with fevers after returning home from a conference.
But Bond didn’t initially correlate her unexplained medical conditions with the virus.
“Not at all. The back pain was a couple of months later, but who doesn’t have back pain? The shingles or the rash I got was in June, made no sense, but we thought it was shingles, I had it a year ago,” said Bond.
She ironically learned about long hauler syndrome through her efforts to support health care workers during the pandemic. A nurse herself, Bond created a Facebook support group for nurses. It became a place people turned to share their experiences and gather information.
“Someone reached out to me asking about long COVID, which I hadn’t really. It was was kind of new to me,” said Bond.
She decided to create another support group, COVID-19 Long Haulers Support, examining the phenomenon and sharing evidence-based research.
“Group members were joining, they would go into these long lists of symptoms: fatigue, the brain fog, the shooting pains, the pressure on the chest,” said Bond.
Recognizing symptoms similar to her own, Bond says her unexplained medical conditions began to make more sense.
With over 7,000 members, she says the group is helping long haulers feel heard.
“One of the major things that’s really bothering patients is when they’re being treated like it’s all in their head," said Bond.
Dr. Ian White, founder and chief scientific officer at NeoBiosis, says long haulers are experiencing post-viral syndrome, not uncommon after the body fights off a virus.
“But with COVID-19, many patients are experiencing mild symptoms, so that doesn’t explain why they need such a long recovery period," said White.
A long-neglected field of research, he says the pandemic is shining a light on post-viral syndrome.
“With all the viral diseases that we’ve seen, if we're talking about SARS, if we're talking about H1N1, we've never developed an efficient treatment for post-viral syndrome, and now may be the opportunity," said White.
He says if there's a silver lining, this often ignored patient population could finally get answers and treatment options.
“I think what we’re going to see in the next year or two is hundreds of thousands, if not millions of patients with long hauler symptoms, who are going to need treatment," White said.
NeoBiosis is using regenerative medicine to develop products to treat coronavirus long hauler syndrome. They were selected to work with the University of Florida Innovate Center, the world's leading biotech incubator.
“We use birth tissue that’s discarded, so it’s considered waste product," said White, "But it contains a huge number of growth factors and cells that are very, very potent at modulating the immune system and promoting tissue repair.”
With consent from the mother, he says tissue is harvested and can be generated into products for clinical use.
White says researchers now believe the virus can attack the vascular system, damaging blood vessels and vital organs.
“From my research experience, what I understand, is the vasculature and the nerves of the body have a very intimate relationship. And if you damage the vasculature with a viral infection, if you damage the metabolic potential of those cells, and they die, or they become diseased, that can affect the nerves they’re associated with," said White.
White believes amniotic fluid, a liquid developed in pregnancy, could help promote tissue repair and reduce inflammation, relieving long hauler symptoms.
"Go back in and utilize the body's own ability to repair and regenerate, using amniotic fluid," said White.
After studying regenerative medicine for 20 years, White says he left academia in hopes of developing products to treat a wide range of conditions. He says while NeoBiosis is a manufacturer, they also have a research and development arm in house.
“We are qualified. I have a Ph.D. from Cornell in regenerative medicine. There’s a lot of pretenders, a lot of bad actors. And they're jumping on the coattails of everybody, pretending to have treatments for COVID. We are here at the Innovate Center, with the resources of the University of Florida, trying to do good, trying to make a difference, and trying to do it the right way," said White.
The company is preparing to submit an Investigational New Drug (IND) application to the FDA.
White says clinical trials could begin this year, pending FDA approval to use their product in COVID-19 long hauler patients.
“The focus now is going to be on how do we treat those patients," said White. "Because they’re going to be removed from the workforce, a burden on health care and they're going to be sick for a very long time. So we need, we must focus on these patients.”
Bond says her support groups continue to grow as patients seek answers. She's continuing efforts to support nurses during the pandemic and says people can support health care workers in crisis through donations to the Nurse Advocacy Network.