A year into pandemic, long-haulers continue to feel COVID-19 effects

DUVALL, Wash. – It’s estimated that two million Americans could be living with long-term COVID-19 symptoms, otherwise referred to as ‘long-haulers.’

Their symptoms range from mild, like smell or taste loss, to extreme fatigue or additional disorders.

In March 2020, Diana Berrent from New York was isolating after a COVID-19 diagnoses. She said she was one of the first in her community to get a positive test.

As she spent over two weeks, alone, she wondered how she could contribute to virus research.

“I started Survivor Corps before there was such a thing as long term COVID, we thought that either you lived or you died,” she said.

While Berrent had a mild case, to this day she said she still deals with lingering symptoms.

Since founding Survivor Corps, the organization has garnered national attention and gained a following from medical experts, COVID-19 survivor and citizen scientists.

“I wanted to set up a new relationship between patients and doctors and scientists where we could share our experiences in real time and let them analyze everything,” she said.

The group has also helped long-haulers like Duvall mother Robin Jackson, who also dealt with a mild case of COVID-19 that left her forever changed.

“I woke up one morning completely paralyzed. I had to be taken by ambulance to the hospital and there was no explanation for what happened,” Jackson said.

A year after her case, Robin still has fatigue and brain fog. She was also diagnosed with POTS or Postural Orthostatic Tachycardia Syndrome, a blood circulation disorder.

READ MORE: Researchers point to autonomic nervous system disorder for COVID-19 long-haulers

Recently, she had a port line put in to get weekly saline infusions to help her symptoms.

“It was the only thing so far in my treatment plan that has really helped me. I have adjusted to my new normal if that’s the right way to say it,” Robin said she’s nowhere near her old self.

Soon, Robin will seek treatment at the Post COVID Rehabilitation and Recovery Clinic at Harborview Medical Center, with professionals from UW Medicine.

These post-COVID-19 clinics have popped up across the globe to help long-haulers.

Diana said they’ve advocated heavily for these centers, as long as they address a whole gamut of patient concerns.

“We need an efficient system and that doesn’t burden the healthcare system to the point of cracking and doesn’t burden the patient,” she said.

Robin continues to improve, and choses to focus on the present. She said helping others through Facebook groups and advocacy work keeps her going.

“This is me this is the cards I’ve been dealt. I can’t have the poor me attitude, I have to fight I have to fight to either get better or used to what is now,” Robin said.

As for Survivor Corps, they continue to work with scientists to unravel the mysteries of COVID-19 long-haulers. Recently, they surveyed over 800 people who had the virus and got vaccinated. Diana explained 41 percent reported improvement in their long-term symptoms. A Yale Virologist has since picked up the data and plans to conduct research to see if there’s any connection.

Additionally, Survivor Corps also has a link for current COVID-19 patients to receive monoclonal antibodies if they qualify; you can check here.