There’s a push for public health leaders in the U.S. to adopt a new definition for long COVID and its symptoms.

Without a clear definition, it’s difficult to diagnose and track cases or research possible treatments, according to a report from the National Academies of Sciences, Engineering and Medicine.

The National Academies engaged more than 1,300 people to develop a definition for long COVID, which it released this week.

It’s defined in the report as “an infection-associated chronic condition that occurs after COVID-19 infection and is present for at least 3 months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems.”

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The report also lists symptoms, including shortness of breath, persistent fatigue, memory changes, cardiovascular disease, blood clots, mood disorders and others.

“I’m really hoping that the change in this will give us some better options for treatments, help, even just guidance on the ways through it and where we can go and what our next steps are and things we can do,” said Jesse Atwood, a long COVID sufferer from Shakopee. “I really hope this will shed some more light on it and give an understanding of how it really does affect people.”

He contracted COVID in January 2022 amid a surge in cases due to the omicron variant. Atwood believes he got COVID while in the hospital, saying goodbye to his father, who was passing away from the illness.

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Atwood’s case of COVID was so severe he was also hospitalized.

“They didn’t think I was going to make it the first day I got there,” said Atwood.

It was the start of a long journey with the illness that persists now. Six months after he was discharged, he had several rounds of failed physical therapy, rehabilitation and occupational therapy.

“I couldn’t get the strength back that I had, I couldn’t get back to the endurance I used to have, it felt like being pushed down more and more,” said Atwood. “They said to me, ‘This is long COVID’.”

The 45-year-old father still deals with brain fog and he doesn’t have a sense of taste or smell. Some days, he can’t walk more than 50 feet without becoming exhausted and using an oxygen machine.

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His doctors are helping him manage his symptoms but they’ve told him there’s no cure. His care team said he’ll also never go back to a career doing HVAC because it is too physically demanding.

“It’s crushing,” said Atwood, who emphasizes long COVID is a legitimate diagnosis. “There are people who have lost almost everything and are just struggling to get back from it.”

According to the report, one of the primary goals of the definition is to create a better understanding of long COVID.

It recommends the federal government adopt the definition. The report references there’s a wide range of uses, from clinical care to insurance coverage and disability benefits, to school and workplace accommodations, to research.