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As COVID health emergency ends, long haulers fear being forgotten

The CDC estimates 1 in 5 Americans who have had COVID have at least one lingering symptom. One woman shares how her life has changed with long COVID.
As COVID health emergency ends, long haulers fear being forgotten
Posted at 8:07 AM, May 10, 2023

Many people have already moved beyond the pandemic. But as the COVID-19 public health emergency ends Thursday, those with long COVID, like Marjorie Roberts, may never be able to leave the virus behind.

Roberts caught the virus in March 2020. She still has symptoms today.

"I'm still dealing with what we call brain fog. I still have the COVID crashes. That's when you just don't know — all of a sudden, you just start feeling like blah," she says in her home outside Atlanta.

It's estimated 1 in 5 Americans who have had COVID-19 have at least one lingering symptom, according to the CDC.

SEE MORE: Millions still struggling with long-term COVID symptoms

Roberts still needs to test her blood pressure and oxygen levels at home.

Not only did COVID-19 damage her lungs, but her medical records show lesions on her liver and one of her kidneys.

Since catching the virus, she also lost several teeth, a symptom the National Institutes of Health found can be associated with COVID-19. 

Roberts has multiple doctor's appointments every month. She's offered support to others living with long COVID as a patient representative with the RECOVER initiative. The effort is using more than $1 billion from Congress to better understand and treat long COVID.

The Department of Health and Human Services says the end of the public health emergency won't impact research into long COVID, and clinical trials to find treatments will begin in the weeks to come. An HHS spokesperson said that was "a record pace" for setting up a clinical trial, since most take five years.

SEE MORE: Long COVID: What we know after 3 years in

For all the ways Roberts says long COVID has impacted her life, doctors still don't know the reason why.

"They really don't know," she says. "They're trying to figure it out, but they don't know. There is a lot that they don't know."

Roberts says COVID's impact on her body and mind forced her to retire last year from her work as a certified life coach. Her doctor of business administration degree is still on her wall.

"I was on top of the world," she said. "I was Dr. Marjorie Elizabeth Roberts."

She worries people will forget about those living with COVID, like her.

"Find your peace and talk about it. Don't be ashamed. Talk about it, because you can't heal what you don't reveal," she says to others who know what it's like to live with long COVID.

Scars, in her case, she believes will never heal.

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