What to know about long COVID, from doctors who’ve treated it

For a growing cohort of people across the country, being infected with COVID-19 has resulted in more than just a two-week absence from work.

dr Bradley Sanville, a pulmonary and critical care physician at the UC Davis Post-COVID-19 clinic, says some people have been “extremely debilitated.”

“They can’t do anything, they have to quit their jobs, their lives are entirely turned around,” he said.

Sanville treats people who are experiencing persistent symptoms of COVID-19 at least four weeks after acute infection, a condition the US Centers for Disease Control is calling long COVID-19.

Reduced sense of smell, physical and mental fatigue, consistent recurring migraines, reduced ability to concentrate and shortness of breath are some of the most common symptoms. According to a new CDC report1 in 5 adults infected by COVID-19 may develop long COVID. Several studies estimated at least 1 in 4 adults infected by the virus experienced symptoms that lasted for months.

Research on long COVID is still developing, meaning physicians and patients alike must cobble together multidisciplinary and experimental solutions to combat symptoms. But the illness also creates a challenge that could reverberate for years throughout healthcare systems — a broad group of people seeking medical care for a condition for which little is known, all at the same time.

Below are answers to questions about what resources are available in the Sacramento region, what other symptoms for long COVID are, how to navigate recovery and more.

What are some potential long COVID symptoms?

dr Monica Verduzco-Gutierrez is the chair of rehabilitation medicine at the University of Texas Health Science Center, and is part of the university’s post-COVID clinic.

“If you have seen one patient with long COVID, you’ve seen one patient with long COVID,” she said. “There’s probably 200 different symptoms that patients can have.”

She’s a brain injury medicine specialist and said a lot of long COVID symptoms are similar to those that other patients with brain injuries have: brain fog, concentration issues, headaches, dizziness, fatigue, even loss of memory. But she’s also seen patients experience tinnitus, chronic pain, nonstop burning in their chest, numbness and pain in their limbs, increased joint pain, back pain, neck pain, hair loss, loss of smell and loss of taste.

Verduzco-Gutierrez added that “brain fog” is a misnomer.

“People are totally forgetting things, they can’t remember the easiest of simple words that you would have learned when you were in kindergarten,” she said.

Sacramento Native American Health Center medical director Dr. Hakeem Adenyi said that aside from witnessing patients with concentration issues and the aforementioned “brain fog,” he’s seen patients who haven’t been able to get back to their regular activities due to fatigue and shortness of breath.

“A lot of patients have been talking about just the sheer amount of fatigue — not being able to get through the normal activities they would be able to do prior to having COVID,” he said. “[Not just] exercise and things of that nature … also some of the more simple things in their lives.”

If you suspect you have long COVID, what should you do?

First, Sanville urges people to get basic screening and labs to rule out any other illnesses that COVID-19 may have unmasked.

“If you’re not going through the normal steps that you would for those symptoms, you may be missing more obvious, better understood entities that we already know about,” he said.

Finding a physician who trusts your assessment of yourself is crucial, said Dr. Hakeem Adenyi, the medical director of the Sacramento Native American Health Center.

To physicians, he has one main piece of advice: Validate patients’ concerns.

“It’s really important to acknowledge people’s symptoms and really give them an opportunity [to be heard],” he said. “People do know their bodies. They can recognize that there’s been a significant change.”

Given that research around long COVID is still evolving, he works with patients to figure out what symptoms are the most concerning to them and what functions they’re hoping to get back in order to figure out what specialist they might need to see.

Some questions that those who suspect long COVID could consider bringing up to a healthcare provider, according to Adenyi:

  • I’m having issues in terms of concentration. Can we do further imaging to determine what’s going on with that?
  • I’m having shortness of breath. Can you check my oxygen saturation to determine if I need supplemental oxygen?

Verduzco-Gutierrez emphasized rest.

“You want to be able to rest your body and get better, right at the beginning within the first couple of months and not overdo it so you don’t have symptoms that are lasting for years,” she said.

But she acknowledged that may not be possible for many.

“Some patients, they’ve said it’s a full-time job just trying to feel better and do their breathing exercises and not do too much and learn how to pace themselves,” she said. “This is something covered under the ADA [Americans with Disabilities Act]. So there should be reasonable accommodations made … as much as you possibly can, have flexible work hours, slow return-to-work programs, letting that be the norm as well.”

What are physicians still learning about long COVID?

While having persistent symptoms after a viral infection isn’t new to medicine, Sanville said, the prevalence at which that’s happened with COVID-19 “seems to be more than we’ve ever experienced.”

“It’s hard to predict and understand outside to evaluate on an individual patient basis, really knowing, ‘How do you treat the population as a whole?’” he said. “There’s just such a broad variety in symptoms.”

Adenyi at the Sacramento Native American Health Center says he’s been continuing his own medical education to better understand how he can support those with long COVID, to pass that education onto patients who suspect they have the condition.

“[I’ve been] looking at what some of their [the UC Davis Post-COVID-19 clinic] practices have been and trying to implement some of the practices within our four walls to support our patients,” he said.

He added that he hasn’t seen a one-size-fits-all cure for the condition.

“I think others would likely tell you this — there is no magic bullet,” he said. “It’s just a matter of continuing to support people through the process and recognizing that people are going to go through it at different points.”

Still, Sanville added that he has seen people improve over time, even if that pace is slow.

What factors increase the likelihood of long COVID?

Sanville said most of the patients he sees while working at the UC Davis Post-COVID-19 Clinic aren’t those who have experienced a more severe initial COVID-19 infection.

“The majority of patients we see actually suffered from just mild, stay-at-home level illness,” he said. “It’s not the norm to have had … a very severe pneumonia requiring hospital stay.”

Verduzco-Gutierrez added that several of her patients who experience long COVID are those who kept pushing themselves with exercise or work when first infected.

“They actually crash and burn and have worsening symptoms … longer-term symptoms,” she said. “As we know, if you have symptoms for more than two or three months, you’re more likely to have them for a year.”

Additionally, preliminary studies have indicated that higher viral load during the initial infection, auto-antibodies and type 2 diabetes increase likelihood that someone develops long COVID.

What do physicians wish you knew about long COVID?

“A lot of people, they’re over COVID, and COVID is not over,” Verduzco-Gutierrez said, adding that she’s still stressing COVID precautions. “I think that family members, friends, need to also validate their family members’ symptoms and know that this is real [and] respect their decisions to still want to be safe.”

For UC Davis pulmonologist Sanville, showing how debilitating long COVID might be is one reason he’s trying to avoid an initial infection.

“I’d advise anybody that you don’t want to be getting something that could rather easily give you kind of a massive change in your quality of life,” he said. “It seems like an innocuous infection to a lot of people [but] it could have wide-ranging long-term effects that are entirely unpredictable.”

What resources are available for those who think they may have or do have long COVID?

According to a list compiled by people with long COVIDthe UC Davis Post-COVID-19 clinic is the only one in the Sacramento region and Central Valley.

The Stockton nonprofit Little Manila Rising’s Equity for COVID and Health Outcomes team piloted a long COVID focus group on June 8; Organizers say they are considering plans for another focus group at a later date, and those interested can stay updated by following the nonprofit’s Instagram @littlemanilastockton.

And the National Institute of Health is organizing a set of nationwide trials, which Verduzco-Gutierrez recommends those with long COVID try to get involved with through finding a study near them.

“This will get patients some work-up regardless of their ability to pay, and then they’ll be first in line when we do medication trials or other kinds of trials,” she said.

There are also emotional support groups available for those navigating long COVID symptoms. Body Politic, a group led by patients with long COVID, put together a handout for providers and patients compiling several patient-led and moderated Facebook groups. Those include groups specifically for Black COVID-19 survivors, families affected by long COVID other people interested in organizing around long COVID education and support.

Community and additional information about the virus can also be found with patients sharing their experiences with long COVID by searching #LongCOVID on Twitter.

The Sacramento Native American Health Center also facilitates three support groups for those affected by COVID: one for healthcare providers, one about re-aclimating to life as the pandemic continues and one for those grieving.

For more information or to join the groups, you can call SNAHC at 916-341-0576 or email them at covidsu[email protected]

Additionally, long COVID is now considered a disability under the Americans with Disability Act, meaning you can apply for disability benefits if your symptoms are significantly impairing one or more aspects of your daily life.

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