A Mayo doctor warns lawmakers of long-haul COVID's health, economic toll

A woman walks on a treadmill as another holds a clipboard.
Anna Marie Rieffert walks on a treadmill at the University of Minnesota Hospital as physical therapist Cassie Anderson takes notes on how Rieffert is feeling during the exercise in Minneapolis in June 2021. Rieffert contracted COVID-19 in October 2020 and has been struggling with long-term effects of the disease ever since.
Evan Frost | MPR News 2021 file

With the omicron surge behind us, health experts and public health officials are turning their attention to solving the pandemic’s next set of challenges. That includes preparing for both the health and economic needs of long-haul COVID patients.

They could number some 7.4 million Americans, with 2.2 million unable to return to work. That’s according to a presentation that Mayo Clinic occupational medicine specialist Dr. Greg Vanichkachorn gave to the Minnesota House Health Finance and Policy Committee earlier this month.

He warned lawmakers to prepare for workplace disruptions and more people needing disability aid. He also urged them to support greater collaboration across health systems to improve research and access to care for long-haul COVID.

Dr. Vanichkachorn joined MPR News host Tom Crann to talk about long-haul COVID last week. Hear their conversation using the audio player above or read a transcript of their conversation below. It has been lightly edited for clarity and length.

What are the symptoms of long COVID?

When most people recover from COVID-19, they're going to get better in the first two to three weeks. Some individuals take a little bit longer — sometimes four to five weeks. But individuals with a long-haul COVID tend to have symptoms that extend three months or more out from their infection.

The symptoms that we see are quite diverse, but the most common is fatigue, and it is quite alarming and profound. We all get tired from having infections like get the flu, but for patients with long-haul COVID, they'll do something as simple as taking out the trash and end up needing to take a nap for three to four hours after that. Or they went for a walk and then had worsening symptoms for days afterwards.

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And while most people focus on the shortness of breath and the fatigue as symptoms of long-haul COVID, there's a whole wide variety of other symptoms that we frequently see such as trouble with thinking, headaches, dizziness, rapid heart rate, anxiety or depressed mood.

How prevalent are long-haul COVID cases?

The estimates have been pretty much all over the place. The most recent research studies have estimated that approximately 50 percent of patients could expect to have some ongoing symptoms at six months. I do think that's probably a little bit of an overestimate.

We often are quoted as saying 10 percent is what we expect in our patients here at Mayo Clinic. But what I can definitely tell you is that this condition is not rare.

Is it more prevalent among the unvaccinated?

Right now, we don't have a lot of good indications that the vaccine has made a difference in the prevalence of long-haul COVID. That being said, we have looked at some of our patient populations and compared them, and we do see that individuals who have been vaccinated tend to have a faster recovery if they're going to experience long-haul COVID. And that's something that's been repeated in research elsewhere.

We also have noticed that patients are coming to get care sooner now than they did earlier in the pandemic. So the question remains, is it the fact that patients are coming sooner that they're getting better faster? Or is it the vaccine? Or is it both? This is something that we're looking at quite closely.

But I would still recommend individuals get vaccinated, because the best way to avoid getting long-haul COVID is not getting COVID in the first place.

How long is a typical long-haul COVID patient unable to work?

Looking back at our patients, we found that just a little over half of the patients, by the time they came to our clinic for help, were able to get back to work. But it's important to note that the average time to presentation from the start of a patient's infection to the clinic was about three months. So another way to look at this is, at three months out from an infection, a little over half of patients were back at work.

In addition, of those patients who were back at work, only about half were actually doing their baseline work. The other half were working reduced hours or with reduced lifting abilities, things like that.

And a fair amount of folks have gone on to have prolonged symptoms that have made it impossible for them to get back to their work, and they've ended up on various assistance programs like disability.

Are there treatments to help people with long-haul COVID?

One thing that we have seen quite frequently in patients with long COVID is that they get themselves stuck in a very vicious cycle. After their COVID infections, they try to bounce back to their normal lives, whether that is doing accounting work or training for a marathon. They're eager to get back and they push themselves and experience a flare-up of symptoms. This causes them to rest. This causes more inflammation and stress on the body. But people are rested, so they try again. And then they go back and forth and back and forth.

So one of the central tenants of treatment that we have here at Mayo, is that patients need help appropriately pacing their rehab. So we involve our patients heavily with physical and occupational therapists.

Right now, there's no specific cure for this condition. So the process can take quite a bit of time, sometimes several months or even a year or two before the person sees noticeable improvement in their function.

How do you want lawmakers to address long-haul COVID?

Right now, the treatment for long-haul COVID is very hodgepodge. There are centers here and there and the number of places where patients can get care is not enough. In addition, there hasn't been much collaboration between centers that have focused in on this. So one of the areas that I think could be really improved is if we collaborated to develop a combined guidance document for patients, providers and employers to help patients recover appropriately from this condition.

Fortunately, I have been working with the Minnesota Department of Health, and they have taken this issue on and have started laying some of the groundwork, including a website for patients and providers. If we can continue work like that, if we have enough stakeholder engagement and resources available for that kind of work, I think that would go a long way toward helping patients get better faster.

The second thing, is that patients with this condition struggle to be heard. And they often get told very unhelpful things and are judged. They get told that this is all in their head, that this is all because of anxiety and depression, and they just need to toughen up and get with the program like the rest of us. And this leaves patients often questioning their own capabilities, questioning what it is about them that makes them have these kinds of symptoms, and it can really be damaging for someone.

So I think it's really important to remember that this is a brand-new condition that we know very little about, and before we start telling people that this is all in their heads or that this can't be possible, we need to do a lot more research.