Helping COVID Long-Haulers Get Back on Their Feet

Dr. Greg Vanichkachorn

Title: Medical director, COVID-19 Activity Rehabilitation Program, Mayo Clinic

Location: Rochester, Minnesota

In mid-2020, doctors began noticing a troubling pattern in some COVID-19 survivors — even those with mild infection. Profound, persistent fatigue and disrupted thinking abilities like memory and multitasking were affecting work and family life for patients, whose symptoms were often brushed off by employers and society overall. In June 2020, Vanichkachorn, an aerospace medicine specialist, occupational medicine specialist and family medicine physician, helped launch Mayo’s program, among the first in the country to evaluate and treat patients with post-COVID-19 syndrome.

As told to Lisa Esposito, as part of U.S. News & World Report’s “One Pandemic Question” series. Responses have been edited for length and clarity.

Q: What are the top challenges for COVID long-haulers?

If I had to really narrow it down to the single biggest challenge going forward: It’s for patients with post-COVID-19 syndrome to be understood by society, their loved ones and their employers.

Even now, a year out from seeing the first survivors with this, patients still come to me saying that they’ve been told: ‘It’s all in your head,’ or they should just get over it or they’re ‘crazy.’

I find that one of the most cathartic things for these patients is just listening to them and then telling them that what they’re experiencing — the fatigue, the trouble thinking — are symptoms we have seen in several hundred other patients at this point. That what they’re experiencing is not all in their head.

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Originally, our division was tasked with helping COVID-19 patients come out of the intensive care unit, get back on their feet and eventually get back to work. We first started seeing patients with trouble recovering in April or May of last year. Based on our definition, anyone who has symptoms longer than four weeks is experiencing what we call post-COVID syndrome.

Most of these patients in our clinic were never hospitalized for their original COVID-19 infection. Only about 25% needed hospital care. The majority were just able to take care of their infections at home and had very mild cases. Yet they’re still having complications.

Patients with these prolonged symptoms are really eager to get back to life, and they start trying to do their normal activities. But, unfortunately, when they do this, they have very profound fatigue. They’ll go for a walk and then have to take a nap for hours afterward. They’ll have fatigue, sometimes for days.

We’ve seen this in other conditions like chronic fatigue syndrome. During these downtimes, patients get more deconditioned and mentally stressed. There is also research showing that chemical changes occur, leading to possibly more damage, like immune problems or neurological dysfunction.

So they get into this cycle of going back and forth, and back and forth, with patients getting more deconditioned and more demoralized with each cycle.

The first thing we do when we meet a patient is an assessment to make sure that everything otherwise is going well, because COVID-19 doesn’t happen in a bubble. Other medical conditions can arise like blood clots or other infections that can take advantage of the immune system.

Once we rule out anything else serious is going on, the first phase is about helping a person get back in better physical condition. Our program really guides these patients, with the help of occupational and physical therapists, to recondition their bodies in an appropriate fashion without causing these flares.

After that, some patients get better right around the four-month mark, where they’re able to get back to life and work.

But some patients need a bit longer treatment and have lengthier recoveries. That’s when we enlist the help of some of our colleagues with expertise in chronic fatigue and fibromyalgia. Similar coping mechanisms, strategies and skillsets tend to help these patients as they continue their recovery — which can sometimes take up to a year after their actual infection.

We have seen some blood markers of inflammation that have been more consistently elevated than others in our research on long-COVID. So I think there’s an actual hyper-immune or hyper-inflammatory component that’s at play for these folks. Basically, it seems like the body is trying to fight an infection that is no longer there, causing damage to itself.

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Many individuals who came down with post-COVID syndrome were leading very active lives — almost Type-A personalities — prior to the infection. But since then, many have had difficulties with their jobs.

About 45% of patients in our clinic report having some troubles with their thinking, whether short-term memory or multitasking. Of all the symptoms, this is the one that really causes the most distress because it often interferes with work in a kind of silent way.

If someone comes into work and they have an oxygen canister because they need it to breathe, and they’re wheezing, it’s easy for coworkers and supervisors to realize: ‘OK, that person needs a little bit of extra understanding.’ But if everything looks outwardly fine, and this person is not performing, that’s where other employees and supervisors have not been very supportive.

Many patients with difficulty at work come to me with performance-improvement plans already in place. I’ll often just write them a letter for their work, saying: ‘This is the condition, we’re learning more about this and it’s real.’ I’m hoping that I’ll have to write those letters less as we go forward.

If you think you might have post-COVID syndrome, my advice is to definitely self-advocate. And if you run into barriers where you’re being brushed off and you don’t think your concerns have been heard, don’t be afraid to seek out care or a second opinion.

The primary concern I have is that patients need to be taken seriously and continue to get help as they move forward. Right now, we’ve got a lot of work left to go; there’s a lot of research that needs to be done. I just hope we don’t run out of steam behind this issue.

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This content was republished with permission from CNN.

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