"It's such a lonely place to be in": Long COVID patients desperate for answers, relief as national COVID-19 emergency declaration ends
NEW YORK -- As the national COVID-19 emergency declaration ends Thursday, some people who contracted the virus are still suffering.
CBS2's Cindy Hsu spoke to people with long COVID who are desperate for answers and relief.
"People look at you and they're like, oh, you look fine, you know, and it's gonna, you're gonna be OK. And I'm going, 'Well, it's been three years and I still have it,'" said Darlene Tejeiro Dahl, who suffers from long COVID.
The post-virus condition can present with any combination of more than a dozen symptoms that appear after the patient tests negative. They can last from a few weeks to a few years.
Symptoms include:
- Brain fog,
- Exhaustion,
- Joint pain,
- Change in smell or taste,
- Gastrointestinal issues,
- Autoimmune issues,
- Headaches,
- Cough,
- Organ damage,
- Stress,
- Depression
- Sleep problems,
- Changes in menstrual cycles,
- Heart palpitations,
- Dizziness,
- Shortness of breath,
- Rashes,
- And hair falling out.
"My heart shooting up to 130 ... Dizziness, shortness of breath, hair falling out, rashes," Tejeiro Dahl said.
Tejeiro Dahl, who's an actress, says she's also experiencing brain fog, which Hsu saw firsthand.
"What was I... Ijust forgot what I was saying," Tejeiro Dahl said.
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"The patients that we're seeing and the patients we're trying to help are those patients who are having persistent symptoms affecting their function, their quality of life," said Dr. Jonathan Shammash, medical director for the Post-COVID Recovery Center at Hackensack University Medical Center.
Shammash has been treating Tejeiro Dahl.
"We're just trying to help them A, with their symptoms, and B, cope with the loss of their lives as they knew it," Shammash said.
He says there are no proven treatments for the many symptoms.
"This is an area, unfortunately, with limited data," he said.
But Shammash says there is experimentation with several different medications such as:
- Histamines,
- Omega-3 fatty acids,
- Naltrexone, which has been used to manage substance abuse,
- And Guanfacine, used to treat ADHD.
He adds more studies are needed.
- Related story: "COVID-somnia" and the impact of long COVID on sleep
There are many who are said to be suffering, with one report that states nearly 1 in 5 adults who have had COVID-19 still have long COVID, according to the National Center for Health Statistics.
For support, nearly 200,000 long haulers have turned to the Facebook group, Survivor Corps. Diana Güthe, who had one of the first confirmed cases of COVID, is the group's founder.
"I started Survivor Corps a way of mobilizing a movement where survivors like me could volunteer for scientific trials," she said.
It's been an important place for members to find emotional support and a vital hub for new information.
"We need the [National Institutes of Health] doing clinical trials on those treatments starting yesterday," Güthe said.
For now, though, Tejeiro Dahl says she deals with long COVID with little medical intervention.
"It's just so hard to deal with all the time. It's such a lonely place to be in because no one wants to hear about it anymore. Everyone's over, done with COVID," she said.
For more information on long COVID and how to seek treatment for it, check out the following resources: