CINCINNATI —

Millions of Americans who previously fought COVID-19 continue to deal with lingering symptoms. Local doctors tell WLWT more than 50 percent of people who contract COVID-19, known as long haulers, deal with lingering symptoms.

Hinda Stockstill, 34, of Pleasant Ridge is one of them. She contracted the virus in December 2020 and was later diagnosed with post-acute COVID-19 syndrome.

"I've been dealing with COVID and lingering symptoms for 11 months now," she said. "I'm glad to see some normalcy returning. I'm glad to see people are having social interactions because I think that's good for our mental health; however, for me I feel like every day has been in some ways Groundhog Day. I just wake up to the same issues every day."

WLWT first spoke with Stockstill in April. At the time she was suffering from a long list of issues including hair loss, frequent fevers and chills, brain dog, numbness in her limbs, neuropathy and fatigue.

"Thankfully due to physical therapy at TriHealth, I can run now for about 10 minutes, walk for 30 minutes, I can clean my house, I can brush my teeth. I can work 40 hours a week," she said. "I'm still losing hair at large amounts. I had to cut it. The pain and the tingling in my hands is improving."

She is back to full-time hours although she had to find a new job, one that she could work remotely. She is now working in medical staffing, helping fill vacancies in local hospitals.

Stockstill said one of the most frustrating parts of her disease is that she continues developing new symptoms, most recently, insomnia and reactivated Epstein Barr, the virus that causes mononucleosis.

She learned that at the Cleveland Clinic where she has been accepted into its reCOVer Clinic for long haulers.

"I never knew I had Epstein Barr virus. I had at some point probably as a child and it never bothered me, but COVID reactivated an old virus," she said. "They're still trying to figure out the brain fog so I have to go back for some neurological studies and some things going on with my stomach."

Stockstill said her family, friends and strangers she's befriended in online support groups are keeping her going. She said she knows two people from those groups who took their own lives due to lingering symptoms, and she encourages any long haulers to seek medical treatment and emotional support.

"We have good days and we have a lot of bad days where we feel really sick, and so some days I just have to cry and I have to get counseling," she said. "It's definitely made me appreciate life. It's a horrible experience, but it's made me stronger and made me realize what's really important to me."

LOS ANGELES, Calif. — In March 2020, Diana Berrent shared her coronavirus journey with the world, documenting her 18-day quarantine with daily videos.

"No one thinks that they're going to be the first one on their block to get the plague, but you know, life happens fast," said Berrent. "I realized I was going to be among the first survivors."

Able to recover at home, Berrent channeled her gratitude into finding ways to help others.

"I am going to be participant 001 at Columbia Presbyterian's effort to recruit survivors to donate their blood and plasma to gather the antibodies and hopefully save the lives of people who are dying," she shared with followers online, in March 2020.

Berrent says she got completely obsessed with the idea of convalescent plasma. During quarantine, she launched Survivor Corps, a grassroots movement mobilizing COVID-19 survivors to donate plasma and support research.

"As a survivor, I had built this internal hazmat suit that I could share with other people, and it was incredibly powerful," said Berrent.

While grateful to support science and help patients, Berrent would later describe this badge of honor as a ticking time bomb. Her COVID-19 symptoms lingered weeks after recovering, and new ones appeared.

"By the middle of April, we knew. Surviving COVID did not mean recovering from COVID," she said.

Her network for survivors became a refuge for long COVID sufferers, thousands of people living with debilitating symptoms after recovering from the virus.

"It's not brain fog; it's cognitive dysfunction," Berrent says. "The people who suffered the fatigue describe it like literally being hit by a bus and then rolled over by a train."

With help from a small team, her nonprofit has garnered nearly 180,000 members online.

"It took a small group of suburban moms who were Zoom schooling on the side to bring everyone together," said Berrent. "I like to think of ourselves as the Moms Demand Action of COVID."

Taking survivors' stories to the scientific community, they now have a seat at the table.

"We act as a subject matter expert to the White House Task Force, to the CDC, to the NIH. I sit on the NIH's RECOVER committee," said Berrent. "I sit on more steering committees than I can count."

Their advocacy has helped launch research studies at institutions like Yale.

But while Congress approved more than $1 billion to study long-hauler COVID, patient advocates are calling for more urgency to get it in the hands of researchers.

"There are scientists throughout the U.S. who are trying to do research," said Berrent. "And they're saying we can't do anything because we are waiting for the NIH to distribute funds."

Last month, the agency announced plans to build a national study population. More than 100 researchers will get funding for the large-scale effort.

"We're there to give them signals, to give them signs of what's going on. Of what people are suffering from. But they need to do the real science," said Berrent. "People are losing hope, and that's not an ok place to be at this stage."

After twenty months, their network of survivors seeking refuge continues to grow.

"We have a long way to go," said Berrent. "What keeps me going is we're making tremendous progress. People are listening to us. We are changing the discourse."

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.

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HEARTBREAKING. DOCTORS ARE LEARNING MORE AND MORE ABOUT COVID-19 EVERY Y.DA GUY: AND AS WVTM 13’S CHIP SCARBOROUGH REPORTS, THEY’RE SEEING ANOTHER POTENTIALLY LIFEHA-CNGING EFFECT OF ETH VIRUS. >> COVID-19 HAS LEFT A NUMBER OF PEOPLE WITH LINGERING SYMPMSTO LIKE FATIGUE OR LOSS OF TASTE AND SMELL. AND NOW, DOCTORS SAY THEY’RE SEEING SOME PEOPLE WITH HEARING LOSS AS A RESULT OF THE VIRUS. >> IF YOU’RE HAVINORG EXPERIENCING HEARING LOSS OR RINGING IN YOUR EARS, THAT WE ALSO CALL TINNITUS, THAT’S A REASON TO GET EVALUATED. >> DOCTORS SAY WHAT’S NOT CLEAR RIGHT NOW IS IF THAT HEARING LOSS IS JUST TEMPORARY OR PERMANENT. >> I MEAN SOME OF THE OTHER THINGS THAT WE SEE, PEOPLE WHO HAVE A LOSS OF SMELL AND TASTE. EVEN THOSE PEOPLE THAT EXPERIENCE A LONGER DURATION, IT APPEARS TO COME BA.CK HEARING IS A LITTLE BIT DIFFERENT, SO WE’LL JUST HAVE TO WAIT AND SEE. I CAN TELL YOU WITH OTHER VIRAL INFECTIONS, YOU KNOW, A SIGNIFICANT NUMBER OF PEOPLE HAVE PERMANENT HRIEANG LS.OS REPORT:ER ONE THING THAT’S SHOWN TO HELP SOME COVID PATIENTS DEALING WITH OTHER LINGERING SYMPTOMS IS THE VACCINE. DOCTORS SAY ANY NGLO-HAULERS WHO ARE ON THE FENCE SHOULD GET VACCINATED. >> ABOUT 60% OF PEOPLE HAVE REPORTED THAT THEIR MPSYTOMS IMPROVE ORES ROLVE ENTIRELY AFTER GETTING VACCINATED. OF THE REMAINING 40%, ABOUT 25% REPORT NO CHANGE AND ABOUT5% 1 REPORT A LITTLE WORSENG.IN REPORTER: ALL AN UNFORTUNATE REMIND OF THE POTENTIALLY LIFE-LONG IMPACTS COVID-19AN C HAVE ON THE HUMAN BODY. IN BIRMINGHAM, CHIP SCARBOROUGH, WV

Some COVID-19 long-haulers are experiencing loss of hearing

Updated: 7:06 AM EDT Jun 24, 2021

Doctors are seeing a potentially life-changing effect of the virus in some patients.COVID-19 has left some survivors with lingering symptoms like fatigue or loss of taste and smell. Now doctors say they're seeing some people suffering from hearing loss as a result of the virus.Doctors aren't sure yet if hearing loss is temporary or permanent.Watch the video above to learn more.

BIRMINGHAM, Ala. —

Doctors are seeing a potentially life-changing effect of the virus in some patients.

COVID-19 has left some survivors with lingering symptoms like fatigue or loss of taste and smell. Now doctors say they're seeing some people suffering from hearing loss as a result of the virus.

Doctors aren't sure yet if hearing loss is temporary or permanent.

Watch the video above to learn more.