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As the pandemic in the US slows, the fight against post-Covid syndrome is on

CNN logo CNN 6/21/2021 By Jen Christensen, CNN
a person standing in a room: APPLE VALLEY, CALIFORNIA - MARCH 30: (EDITORIAL USE ONLY) Registered nurse Jorge Silva Jr. (L) and Lucina Lopez, housekeeping environmental service, prepare an ICU room for a new patient after the previous patient was downgraded at Providence St. Mary Medical Center on March 30, 2021 in Apple Valley, California. At one point, the Intensive Care Unit (ICU) had been forced to expand from its 20 traditional ICU beds to a total of 60. The hospital was treating over 180 COVID-19 patients at the peak of the surge but has seen a sharp decline and is currently caring for just 12 coronavirus patients while also hosting a vaccination clinic at a nearby church. In addition, the hospital is now able to receive one visitor per patient, with restrictions and exceptions, during visiting hours. (Photo by Mario Tama/Getty Images) © Mario Tama/Getty Images APPLE VALLEY, CALIFORNIA - MARCH 30: (EDITORIAL USE ONLY) Registered nurse Jorge Silva Jr. (L) and Lucina Lopez, housekeeping environmental service, prepare an ICU room for a new patient after the previous patient was downgraded at Providence St. Mary Medical Center on March 30, 2021 in Apple Valley, California. At one point, the Intensive Care Unit (ICU) had been forced to expand from its 20 traditional ICU beds to a total of 60. The hospital was treating over 180 COVID-19 patients at the peak of the surge but has seen a sharp decline and is currently caring for just 12 coronavirus patients while also hosting a vaccination clinic at a nearby church. In addition, the hospital is now able to receive one visitor per patient, with restrictions and exceptions, during visiting hours. (Photo by Mario Tama/Getty Images)

Dr. Michael Saag normally cares for Covid-19 patients, but early in the pandemic, he became a patient. Now, he has joined the ranks with lingering symptoms from a condition doctors are still trying to understand.

a person lying on a bed: HOUSTON, TX - DECEMBER 21: (EDITORIAL USE ONLY) Medical staff member Tanna Ingraham holds the hand of a patient in the COVID-19 intensive care unit (ICU) at the United Memorial Medical Center on December 21, 2020 in Houston, Texas. According to reports, Texas has reached over 1,600,000 cases, including over 25,900 deaths. (Photo by Go Nakamura/Getty Images) © Go Nakamura/Getty Images HOUSTON, TX - DECEMBER 21: (EDITORIAL USE ONLY) Medical staff member Tanna Ingraham holds the hand of a patient in the COVID-19 intensive care unit (ICU) at the United Memorial Medical Center on December 21, 2020 in Houston, Texas. According to reports, Texas has reached over 1,600,000 cases, including over 25,900 deaths. (Photo by Go Nakamura/Getty Images)

In Saag's case, Covid-19 was never so bad he had to be hospitalized, but he spent 15 days isolated in his room, and he got better -- mostly.

His brain fog persisted. He was easily out of his breath. His heart raced. These symptoms lasted six weeks post-infection.

Saag felt good enough to go back to work at University of Alabama Birmingham, but even after other symptoms cleared up, he experienced hearing loss and now wears hearing aids.

"It's frustrating," he said ruing a US Centers for Disease Control and Prevention's Clinical Outreach and Communication Activity meeting Thursday.

Saag said he has met other patients with ongoing symptoms who are frustrated, too.

"They'd gone to their providers who said, this is in your head, or this is not something to be worried about, but it was pretty profound," Saag said.

a woman looking at her cell phone: Margelet Hamilton, a math professor at Tallahassee Community College, sings in the church choir and decided to get vaccinated during revival week. (Credit: Dave Ruff/CNN) © Dave Ruff/CNN Margelet Hamilton, a math professor at Tallahassee Community College, sings in the church choir and decided to get vaccinated during revival week. (Credit: Dave Ruff/CNN)

People sometimes called "long haulers" experience long Covid, post-Covid conditions, post-Covid syndrome -- there's no settled name. There's also no diagnostic test, no specific treatment, no pill to take. And while research is ongoing, there aren't large, peer-reviewed, gold-standard clinical trials yet either.

Some people get better on their own over time, or symptoms can be treated, but for others, recovery remains elusive.

This week, the American Medical Association adopted a policy to educate physicians and students on post-viral syndromes following Covid-19.

Also this week, the CDC also posted interim guidance meant to help doctors better evaluate patients with post-Covid conditions, even with so much uncertainty around them.

100 symptoms and little consistency

Post-Covid is an umbrella term that describes a variety of physical and mental problems that can follow four or more weeks after a Covid-19 infection, according to the CDC.

a person sitting in a room: BOSTON - DECEMBER 31: Registered nurse Janet Gilleran prepares to treat coronavirus patient Mike Mokler with Bamlanivimab, a monoclonal antibody, in the Respiratory Infection Clinic at Tufts Medical Center in Boston, MA on December 31, 2020. Mokler said after a coworker tested positive recently for the coronavirus he began feeling symptomatic himself and tested positive soon after. Staff members were setting up for the distribution of monoclonal antibodies, a treatment for COVID-19. (Photo by Craig F. Walker/The Boston Globe via Getty Images) © Craig F. Walker/The Boston Globe/Getty Images BOSTON - DECEMBER 31: Registered nurse Janet Gilleran prepares to treat coronavirus patient Mike Mokler with Bamlanivimab, a monoclonal antibody, in the Respiratory Infection Clinic at Tufts Medical Center in Boston, MA on December 31, 2020. Mokler said after a coworker tested positive recently for the coronavirus he began feeling symptomatic himself and tested positive soon after. Staff members were setting up for the distribution of monoclonal antibodies, a treatment for COVID-19. (Photo by Craig F. Walker/The Boston Globe via Getty Images)

There are potentially hundreds of symptoms, including shortness of breath, fatigue, headache, fever, anxiety, depression, pain, a loss of taste and smell, difficulty thinking, a racing heart and many others.

Symptoms are not consistent. Doctors can't predict what symptoms someone will have or who will get them, and symptoms can change over time, or disappear and then come back.

Sometimes, the fix seems relatively simple. Dr. Mitchell Miglis, an autonomic disorders specialist who works with post-Covid patients at Stanford Health Care said there are cases where he reminds people to watch their salt, or increase their fluids, or prescribes a beta blocker, and they eventually get better.

"We first try to control the symptoms and then use that as a bridge to get them more physically active and then treat all the components that we can," Miglis said.

But not all symptoms are that easy to address. "We don't really have a single treatment that addresses the underlying disease, because we still don't know what's causing the underlying disease," Miglis said.

Millions might be affected

It's not totally clear how many people have it either. In April, the National Institutes of Health Director Dr. Frances Collins told Congress preliminary research found about 10 to 30% of people who had Covid-19 may develop long-term health issues.

One white paper study from FAIR Health published Tuesday looked at private insurance records for nearly 2 million Covid-19 patients and concluded nearly a quarter, 23.2%, had at least one post-Covid condition 30 or more days after initial diagnosis. With more than 33 million Covid-19 cases counted in the United States since the start of the pandemic, there could be millions facing ongoing symptoms.

"That's probably an underestimate," said Leonard Jason, a professor of psychology who works on the issue of brain fog with post-Covid patients at DePaul University in Chicago. He wants doctors to watch out for these patients so they get appropriate care.

"There's probably a lot of people who have gotten this and not been identified. That's one issue, how do we even come up with the criteria of what it means to be a long hauler?" Jason said. "There's not a lot of consensus at this point, which is a problem."

Who are the long haulers?

The FAIR Health study that looked at insurance records between February and December 2020 found the post-Covid conditions were more common among patients with more severe Covid-19, but a "substantial" share of asymptomatic cases also had long-term symptoms. More research is needed, it said.

Most of the post-Covid conditions studied were more common in females, yet there were 12 symptoms more common among men.

"I've been struck by how many people have no underlying conditions, in fact, a couple marathon runners that are young in the 20s and 30s. They come back with post-Covid conditions that they have trouble sometimes just standing in the shower," Saag said about some of the patients he has treated.

What's being done

In February, the NIH launched an initiative to identify the cause, the prevention, and treatments for post-Covid condition. In December, Congress provided $1.15 billion in funding over four years to support the NIH research.

The American Medical Association policy adopted this week also called for advocacy for more funding for research, prevention, control and treatment.

For now, a person feeling long Covid symptoms may be able to receive care from their regular doctor, or one of the post-Covid care clinics that have opened around the country. During a call with clinicians this week, the CDC said most conditions can be identified and managed by a person's primary care doctor, in coordination with specialists and such clinics.

The post-Covid clinics see signs of hope

Mount Sinai's Center for Post-Covid Care in New York, one of the first such clinics to launch, has been busy. By February, doctors had already seen 1,600 patients. These days, David Purtino, a physical therapist who helps patients run the clinic, is feeling a new sense of hope.

"When I was speaking to the media three months ago, I would say everyone is improving, and we're encouraged by how their improving, but there's not a single person that's beyond Covid," said Purtino. "Now, after months and months of working and perfecting this, we have dozens of individuals that we've now discharged telling us they feel like they did before Covid. This is a new development."

For many patients it hasn't been easy. On average, he said, it's 100 days of therapy. "It's a long process, very slow, very incremental therapy, twice a week, and people need to make a lot of behavioral and life adjustments along the way to avoid symptoms triggers and exacerbations," Purtino said. "But you know, we feel pretty encouraged that we're finally getting some traction."

Not everyone takes that long to heal. Dr. Panagis Galiatsatos, a pulmonary and critical care medicine physician who treats patients at Johns Hopkins Post Covid-19 Care clinic said some people get better in about three months.

"I tell them it's like when you break a bone. If we take the cast off, it's not going to be ready to run right off the bat. You've got to rehab it, and it's going to be uncomfortable, but it will get better," Galiatsatos said.

Another category of patient develops symptoms that can be treated that are more pulmonary-specific, like asthma.

"Everything from brain to feet can be affected," Galiatsatos said. Some people also need mental health care.

"The last category of patients we see have symptoms that don't fit an actual disease process that we are aware of," Galiatsatos said. He tells them they'll figure it out together.

One patient he treated compared it to how good doctors treated AIDS in the '80s.

"Sometimes we have to do a little bit of outside the box thinking on how best to help," Galiatsatos said. "But I have confidence we can."

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