Long COVID Patients Report More Than 200 Different Symptoms

Scientists are still trying to understand the long-term effects of COVID-19, which can seemingly affect numerous areas of the body. Now, a survey of more than 3,500 people with long COVID found that people experienced 200 different symptoms that affected 10 different organ groups.

The research team that evaluated the data, including lead author Athena Akrami, PhD, a neurologist with the Sainsbury Wellcome Centre at UCL in London, were all long COVID patients themselves. They intended to focus on the types of symptoms people were experiencing, instead of looking at the prevalence of long COVID.

The most common symptoms reported were fatigue and the cognitive dysfunction called brain fog, as well as the worsening of symptoms after physical or mental exertion.

Other symptoms included:

• Visual hallucinations
• Tremors
• Itchy skin
• Changes to the menstrual cycle
• Sexual dysfunction
• Heart palpitations
• Bladder control problems
• Shingles
• Memory loss
• Blurred vision
• Diarrhea
• Ringing in the ears

“While there has been a lot of public discussion around long COVID, there are few systematic studies investigating this population; hence relatively little is known about its range of symptoms, and their progression over time,” Akrami said in a statement. “We have gone directly to ‘long-haulers’ around the world in order to establish a foundation of evidence for medical investigation, improvement of care, and advocacy for the long COVID population.”

The study, published in the Lancet's EClinicalMedicine, used data collected through an online survey that was distributed to several COVID-19 support groups. The responses came from 3,762 people who were either confirmed of or suspected of having COVID-19. There were 1,020 people who were confirmed as having had COVID-19 and 2,742 people who either hadn’t been tested or who tested negative for the virus.

The analysis of data was limited to people who were ill for longer than 28 days and whose symptoms started between December 2019 and May 2020.

The results showed that the respondents reported having 203 symptoms in 10 organs systems. For more than 90% of the respondents, their recovery lasted more than 35 weeks.

People averaged having about 56 different symptoms, which varied over time. Nearly all—96%—of respondents said they had symptoms lasting more than 90 days after their original infection and 65% said they had symptoms for longer than 180 days. However, not everyone who responded to the survey was more than 180 days out from their original infection.

And those with fewer symptoms on average recovered more quickly—typically in less than 90 days.

Studying Long COVID

Because the pandemic is still less than two years old, little information has been collected on the after effects of COVID-19 infections.

The focus of the pandemic is only now moving from mortality rates to the problems of people who don’t recover or take a long time to recover, Priya Duggal, MPH, PhD, professor of epidemiology at Bloomberg Johns Hopkins School of Public Health in Baltimore, who was not involved in the study, tells Verywell.

Research at Johns Hopkins previously found that about 30% of people who have had COVID-19 experience lasting symptoms and about 5% have symptoms so severe that it interferes with daily life. Now, this new study helps shift focus to the wide array of symptoms caused by the virus.

“Papers like this shed a light on the fact that there are patients, good numbers of them, that are having a plethora of symptoms,” she says. “This is providing us with a snapshot of individuals who've had, for the most part, long COVID and who have not recovered in more than 90 days.”

The survey is limited, however, because only participants who had lasting symptoms after infection with COVID-19 were included, Duggal says. Without a control group of people who did not have COVID-19, “you can't make any inferences. All you can do is report it and that's what this study is trying to do: Just report it,” she says.

“Hopefully, we can move in the next couple of months and so the next stage is trying to make some inferences and find out who's at risk,” she adds.

In order to begin studying who may be at the highest risk for long COVID, Duggal says a few changes need to be made to future research.

“What we need is a corollary to this as well," Duggal says. "We need to see individuals who don't have the symptoms who maybe are of a similar age, or race, or sex, or other factors to try to understand who's at risk for the symptoms,” Duggal says. She suggests future studies also send a survey to people who did not contract the virus to determine the background rate for these symptoms as well.

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