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'COVID-19 Long Haulers' search for answers while doctors do the same

Posted at 9:04 PM, Dec 27, 2020
and last updated 2020-12-27 23:25:49-05

SALT LAKE CITY — In March, Lisa O’Brien began to feel sick. As it was early in the pandemic, she didn’t immediately get tested for COVID-19. More than two weeks later, while still feeling sick, she was tested. It came back negative, but unfortunately, now doctors tell her it came back negative because she waited so long to be tested.

“My doctor, after I got a blood clot in my lung in week 12, was like, ‘Yeah, you probably had COVID,’” she said.

That ‘probably’ answer quickly turned to ‘definitely’ when she entered a study and started seeking help from doctors in New York City who started seeing many COVID-19 patients who weren’t getting better.

During this time, Utah wasn’t seeing many COVID-19 cases and several doctors hadn’t heard of people experiencing long-term symptoms of COVID-19, which made things difficult for O’Brien.

“I just thought, 'I have to create a local group here and find everyone here so I can prove that it’s an issue,'” she said.

The "Utah COVID-19 Long Haulers" Facebook page was created by O’Brien, and it has slowly grown to over 1,000 people.

There are people of all ages and symptoms. Tanner Olson went from a young, healthy marathon runner to a COVID-19 long-hauler diagnosed with a chronic illness.

“You think you are making progress one day and then right back to having a rough or awful day the next day,” he said.

READ: U of U donating to help COVID-19 long-haulers research

Almost 10 months since the symptoms began, O’Brien said some things are finally starting to get better. She still is experiencing insomnia, extreme fatigue and cognitive issues, as well as others. No one knows if her symptoms will ever go away or get worse.

“I will see posts that are like, ‘As soon as you get the vaccine, what’s the first thing you’re going to do?’ or ‘When COVID goes away, what’s the first thing you are going to do?’ and people are like, ‘I’m going to go here or here and travel and do this and this,’ and I’m like, ‘I am still going to be trying to find answers,’” she said.

READ: 'COVID-19 Long Haulers' group helps Utahns cope with pandemic

There isn’t much research on people experiencing long-term impacts from COVID-19, but it is beginning to be widely discussed, even recently by Dr. Anthony Fauci.

Dr. Lucinda Bateman, the medical director for the Bateman Horne Center in Salt Lake City, said their team is working to learn more about "Long COVID" symptoms through patients, social media, medical literature, finding out what is being studied and more.

“The problem with COVID-19 is we haven’t had a long enough time to see the progression of illness, and we don’t know if the 10, 20, 30 percent of people who aren’t better from COVID-19 in three months, we don’t know what to tell them. We don’t know if they will be better in a year or in two years," Bateman said.

The Bateman Horne Center is a non-profit that specializes in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia (FM) and many post-viral illnesses.

Being knowledgeable about looking for signs of Long COVID could possibly help with patients’ outcomes, Dr. Bateman said.

“We also think that providing supportive care might improve prognosis. That recognizing the issues that are going on, instead of letting it affect people and make them sick and limit their ability to go to work and do things, there are some identifiable portions of post-viral syndromes that will be amenable to treatment. Not only will that make the patients feel better, have fewer symptoms and maybe function better, but we think it might actually improve their prognosis and improve their chance that they may completely recover,” she said.

Some people worry the symptoms are in their head because various medical (non-COVID) tests are coming back negative, Dr. Brayden Yellman with the Bateman Horne Center said.

“Just because we don’t have a lab test or a specific imagining test that we can do to give you a yea or nay on post-COVID doesn’t mean this is in your head. This is real,” he said.

People who are experiencing long-term impacts from COVID-19 should monitor their symptoms closely and go to their doctor with a list of symptoms, how they felt and when, plus any sort of health data they can provide, Dr. Bateman said.

“You just need to communicate what your symptoms are and keep communicating and let your doctors learn with you,” she said.

This could be an opportunity to study patients with post-viral illnesses beyond just COVID-19, Dr. Bateman said.

“COVID-19 presents a very unique opportunity to study people from the time they are sick all along through the different steps as they develop chronic illness. So, this is going to give us some very valuable information for dealing with other post-viral syndromes,” Dr. Bateman said.

READ: Utah lawmakers dedicate millions to make sure COVID-19 vaccine is free

The Bateman Horne Center provided some resources for FOX 13 News to share.

The following resources are not intended to serve as, or replace, the medical care provided by the healthcare team(s) serving those with Long COVID.

These resources have been developed for those with ME/CFS, FM and related conditions. However, they may aid those experiencing Long COVID symptoms as they work with their care team on assessment and ongoing management options.

Medical Provider Resources

While the following two videos are geared towards medical professionals, patients and their families have found them to be an insightful tool to share with their providers when assessing/managing OI.

Long COVID Patient Resources