What a long COVID diagnosis means when your doctor knows little more than Google

Will long COVID cause a "tsunami of devastation?" Some doctors don't believe the hype, but they do believe patients

Published June 16, 2022 4:14PM (EDT)

Coronavirus and blood cells (Getty Images)
Coronavirus and blood cells (Getty Images)

Last December, like millions of Americans, I contracted a decidedly mild case of COVID-19. Months later, when bruise-like lesions developed on my toes, I was baffled. In the media, the condition has been called "COVID toes," but it took me months to connect the dots. Many long haulers — people with post-COVID conditions — likely have yet to make the connection. 

Medical experts now believe COVID-19 can trigger a variety of conditions colloquially referred to as long COVID. On its website, the Centers for Disease Control and Prevention (CDC) notes fatigue, trouble breathing, difficulty thinking, changes in smell and taste, and muscular pain. However, most conditions associated with long COVID are not unusual enough to be distinct.

"When people have long recovery periods or never really returned to normal, they enter into this mystery diagnosis world where the pattern doesn't fit something anyone's ever seen before," Cardiologist Dr. Harlan Krumholz told Salon in an interview. "And no one knows what to do about it."

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Loss of smell and COVID toes were peculiar enough to grab headlines, and eventually, led many to realize that their odd symptoms were connected to a previous COVID diagnosis. Therein lies a critically terrifying aspect of long COVID: When it comes to seemingly disconnected conditions like brain fog and COVID toe, many people are unaware that these afflictions are connected to a cough they had weeks or months ago. Now, as society moves away from testing and more cases go unnoticed, the peculiarities of long COVID mean that many are unaware that a grab-bag of conditions they are experiencing are connected to mild COVID cases from long ago — meaning that huge numbers of people may remain undiagnosed.

Many people who described their long COVID symptoms to medical professionals found themselves ignored or dismissed. For others, like myself, the mystery around long COVID leads to anxiety, particularly given how medical experts simply do not have the answers. Could the mechanism that leads to one apparent but relatively minor irritation be causing other damage to my body?

RELATED: COVID-19 is linked to long-term mental health issues in recovered patients

As health officials give in to a populace that wants to move on from the pandemic, we are still largely in the dark about long COVID, and funding from Congress for research has shrunk significantly, according to Dr. Krumholz.

"It's a moment in time in which people are hopeful that this all just goes away," he said. "We're left with a lot of uncertainty about a lot of people who are suffering, and we're moving far too slowly to try to fill the gaps."

* * *

When I started to seriously consider I might have scurvy, I went to the internet for help. As it turned out, my fruit consumption habits were probably not a factor in my symptoms. A quick WebMD diagnosis revealed that I had chilblains, a rare condition associated with Raynaud's syndrome, which is a vascular disorder. Raynaud's is typically genetic, but it can also be triggered by certain infections, like COVID-19. 

Still, it was bizarre enough that I did get a professional opinion. That opinion turned out to be exactly that: an opinion, meaning confirmation and little else. At the Cleveland Clinic, the doctor who examined me said it was only her third case of long COVID. She was sympathetic but could offer nothing beyond visual confirmation and a recommendation of hydrocortisone to treat the irritation.

Prior to recognition from the medical establishment, frustrated long COVID sufferers banded together to get their attention. One video from a group of survivors called LongCovidSOS, posted on YouTube, apparently struck a chord. The World Health Organization invited the responsible group to a meeting in October 2021, in which advocates made their case for an investigation into a condition that, at the time, was still misunderstood.

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Meanwhile, some doctors who had observed peculiar symptoms following COVID-19 infections conducted their own studies from largely anecdotal evidence. At Yale, Dr. Krumholz is investigating potential avenues to mitigate negative outcomes of long COVID. Anecdotal evidence suggests that vaccines actually may be one such solution.

Leading the Alberta Health Services COVID-19 Scientific Advisory Group, Dr. Lynora Saxinger, like many medical professionals, worries about the impact COVID-19 infections have down the line. However, for her vast discrepancies in research complicate matters. The most extreme reports suggesting "there's gonna be an absolute tsunami of devastation in the population"

"If you look at the available information about post-COVID conditions, it is all over the map," she added.

While some studies minimize personal accounts of long COVID, and other studies conversely hint at extremely high risk, Saxinger asserted that "the truth is generally somewhere in the middle."

Saxinger suggests that cognitive decline may be more psychosomatic than studies have let on, but further research is needed to determine that.

In part, this discrepancy is a matter of skewed statistics. One recent study in Nature suggested COVID-19 infection increased the risk of heart disease. Mount Sinai rehabilitation expert Dr. David F. Putrino told Medical News Today the findings concerned long COVID could lead to a "mass-disabling event." The study however, was limited by data, which came from the department of Veterans Affairs. Although experts analyzed a large cohort of subjects, they were mostly white, male veterans.

Sample populations have also often been oversaturated with the most severe cases of COVID-19. Much of the data we have on long COVID comes from hospitals and from long haulers that were infected prior to vaccinations.

For example, National Institutes of Health (NIH) reported that vascular damage could lead to lasting brain damage, but only a small group of deceased hospital patients were analyzed. Saxinger suggests that cognitive decline may be more psychosomatic than studies have let on, but further research is needed to determine that. 

"We actually are all in our own heads and our heads are part of our health," she told Salon, underscoring the risk of sounding dismissive. "The basis of these conditions might not be all due to the virus."

Researchers know far less about the long term impact of COVID-19 when symptoms are mild, Saxinger explained. That's why Dr. Krumholz has also been mounting a study that would analyze a wider swath of the population. Such research may yield not only answers but also potential avenues to alleviate symptoms. 

According to Krumholz, different clusters of symptoms may be the result of entirely different mechanisms of the virus, and findings could actually yield discoveries about the impacts of other viruses as well. Inflammation, vascular damage, and even persistence of the virus itself have been implicated, but it could be years before we have a clear picture of how long COVID works and are able to treat it effectively. 

"The more we start getting large numbers of people to study and treating them like partners in these studies, returning information, working together, holding hands, the faster we can make progress, but we need to really get that done as soon as we can," he concluded.

Read more on long COVID:

By Eric Schank

Eric Schank is a fellow at Salon writing for science and health. He holds a BA in environmental studies from Oberlin College.

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