Andy Larsen: We’re starting to demystify long COVID — what it means, who gets it, and what to do about it

From a dizzying array of reported symptoms to the risk factors involved, researchers are starting to get a handle on the plight of the long-haulers.

(Francisco Kjolseth | The Salt Lake Tribune) Lisa O'Brien is the creator of the Utah COVID-19 Long Haulers group, a support group for people who say they have experienced long-term impacts as a result of the coronavirus. O'Brien began experiencing COVID-19 symptoms after a trip to Hawaii in early March but never got tested because she didn't have the usual symptoms required for testing at that time. While doctors consider people who have survived for three weeks following a diagnosis as "recovered," O'Brien says she continues to experience excessive fatigue as well as blood clots and tachycardia months later.

When we think about the consequences of COVID-19, we think about death first, obviously. And so far, 2,250 people and counting have died of COVID in this state.

Next, we think about hospitalizations: people who need to go to a hospital and then don’t die. We’ve had more than 18,000 of those, or about 1 in every 175 Utahns. A local comparison that might put that into perspective is that it means, on average, one to three people per Latter-day Saint ward have been hospitalized.

After them are the long-haulers: people who get COVID-19 and have to deal with their symptoms for a long time, with or without hospitalization. These people aren’t as frequently in our statistics as the deaths and hospitalizations, but they still matter.

They’re also talked about in almost mythical terms. Even the scientific literature can trend this way. “There is currently no accepted case definition for symptoms or duration of long COVID. Consequently, it is difficult to estimate the prevalence or characteristics of this new condition,” one paper writes. It sometimes feels like trying to understand long COVID is like trying to nail Jell-O to a wall.

But there’s good news: In recent weeks, we have gotten some honest and quality research on what happens to people with long-term consequences from COVID. Let’s dig into it.

What are the symptoms?

One of the central difficulties of studying long COVID is just how many different symptoms people will report as a result of the disease, especially when asked online. For example, one study asked 3,762 long-COVID respondents from 56 countries in an online survey whether they were facing 271 different symptoms.

It turns out that when you do this, people will say that they face a huge array of those symptoms. Over 95% of them reported fatigue; about 80% reported shortness of breath; 50% reported irritability; 30% reported itchy skin; 25% reported that they were feeling more angry than before; 10% reported getting new allergies; 5% reported a decrease in the size of their penis. (Researchers left unasked and therefore unanswered what percentage reported an increase in penis size.)

This is why scientific studies need control groups: to find what people who have a disease feel compared to those who don’t. And, unfortunately, control groups have been reasonably rare with regards to long COVID research. In a Nature review of 24 long COVID studies that happened through April, five had control groups.

A study from England was one of those studies, though. Researchers compared the responses from public health workers (a pool that might know how to better diagnose symptoms, by the way) and found that there were three categories of symptoms that were significantly more likely to occur in the workers who had COVID-19 months ago compared to those who didn’t.

Those were:

• Sensory symptoms: loss of taste, smell, appetite, or blurred vision.

• Neurological symptoms: forgetfulness, short-term memory loss or confusion/brain fog.

• Cardiorespiratory symptoms: chest tightness or pain, unusual fatigue, breathlessness after minimal exertion, or palpitations.

They did not find any difference between the groups in terms of having dermatological, gynecological, gastrointestinal or mental health symptoms.

How many people get long COVID?

We can use those those studies with control groups to try to get a handle on what percentage of COVID patients end up seeing longer-term symptoms, even after they test negative. Naturally, we want to break it down by initial COVID severity.

For hospitalized patients, ongoing symptoms are quite common; it’s a topic I looked at back in November. In general, various studies show 50% to 90% of these patients have symptoms that last beyond two months.

For more mild-to-moderate COVID sufferers, percentages are much lower. The English study among health care workers was in this group. It found persistent symptoms among 3% of its respondents, with an additional 11% having periodic symptoms.

A Swedish study did the same thing as the English study, comparing health care workers with and without mild COVID. Researchers found 26% of COVID workers vs. 9% of non-COVID workers reported at least one moderate to severe symptom lasting for at least two months of the study. And 15% vs. 3% reported at least one moderate to severe symptom lasting for at least eight months.

Understandably, many people worry about the potential impacts of COVID in children, especially those who can’t be vaccinated. In Switzerland, researchers looked at a group of 2,500 children, and again compared the COVID-infected vs. those who weren’t COVID-infected. Interestingly, they actually found that the percentage of those who said they had symptoms was smaller in the infected group, 9% to 10%, after one month. However, after 12 months, 4% of the infected compared to 2% of the uninfected had symptoms.

That smaller number matches up with a couple of other studies of children, which found relatively low frequency of lasting side effects. The COVID Symptom Study found about 1,700 children with positive tests, of which 1.8% reported ongoing symptoms — compared to the 0.9% of kids with no positive test. And an Australian study tracked 151 kids who got COVID in Australia and found that none had ongoing symptoms nine months later.

What are some of the risk factors for long COVID?

One study looked at 3,357 adults who had been diagnosed with long COVID in the United Kingdom and compared them to the general COVID-getting audience. Unsurprisingly, age was a factor. Having poor pre-pandemic mental or physical health were risk factors, and those who had asthma were at higher risk.

Perhaps surprisingly, being female was also a risk factor. Males have been more likely to die during this pandemic, but perhaps females are more likely to get longer symptoms. And interestingly, white people had a much higher rate of being diagnosed with long COVID, despite minorities facing generally larger hospitalization and death burdens. That could be a sign of something real going on, or a sign of inequity in the diagnosis process in Britain.

What’s actually going on here from a medical point of view?

First, let’s note that long-term impacts after viruses are something we knew about for a while. An overview in the Journal of the Royal College of General Practitioners of “post-viral syndrome” from May 1987 stated, “The syndrome typically follows an upper respiratory tract infection from which the sufferer fails to make a full recovery, complaining of a multitude of symptoms which may persist for months or even years.” That sounds like long COVID.

Furthermore, the symptoms match well. It’s a known diagnosis that we’ve been studying — albeit not enough — in the years before and since with other viruses like the flu.

And we have hard data that it happens. For example, a study at the University of Calgary studied 62 athletes who got common colds; 48% of them were found to have some inflammation of the heart in a follow-up visit four weeks later.

Now, we also know that COVID is more adept than the flu or the common cold at crossing between organ systems than most other viruses. That’s what caused all of the various weird COVID symptoms we saw at the beginning of the pandemic. And so it’s reasonable to assume that COVID is more likely to lead to post-viral syndrome with non-respiratory consequences than most of the viruses we’re used to seeing.

As we figure out what’s actually going on here, there are two types of error of which we need to be aware. One we’ve already discussed: the knowledge that some people are associating unrelated or previously occurring symptoms with COVID, essentially because it’s all the rage right now.

But we also need to keep in mind the other end of the spectrum: doctors dismissing their patients’ very real symptoms because the issues they’re facing are difficult to understand. And, truthfully, that happens, too.

The actual reason these symptoms occur is currently up for intense debate among those who study long COVID. Some think it’s due to a small amount of persistent coronavirus that still remains in long-haulers, causing immune fatigue. Others think it’s due to dysautonomia, in which the virus starts impacting the nervous system. A third group thinks you can chalk up the symptoms to the virus’s impacts on the cardiovascular system, and the inflammation or clotting that can result. It could be some confluence of these factors.

A study this week in the Journal of Clinical Immunology also found an interesting link: People who have had long COVID generally had relatively lower antibody levels than those who had COVID and recovered. That’s led some to believe that boosting immune response — by vaccination or injection of outside antibodies — might be a reasonable idea to help long COVID sufferers. More research will be required.

That’s one exciting thing about all of the attention that will continue to be on long COVID: It figures to increase our understanding of post-viral syndrome in general. Effective treatment options and maybe even a cure would be the logical endpoint. New perspective and money for research will almost certainly help our problem.

Hey, instead of trying to nail long COVID Jell-O to the wall, maybe we can figure out how to put it in a bowl — contain it and cool it. Just promise me: Don’t bring this Jell-O to the ward potluck.

Andy Larsen, one of The Salt Lake Tribune’s Utah Jazz beat writers, doubles as a data columnist. You can reach him at alarsen@sltrib.com.