Sept. 29, 2022 – No one yet knows if long COVID could end up becoming a lifelong dance with COVID-19. 

Some people have had persistent symptoms such as fatigue, memory issues, or headaches for months and even years. For them, it may seem never-ending. 

Yet, there are also some people taking advantage of the uncertainty around long COVID to prey on people, especially through social media groups. Buyer beware of any unproven treatments, experts say, because there are online scams targeting people with long COVID. 

Three experts in public health and medicine offered these and other insights during a media briefing Wednesday sponsored by SciLine, part of the American Association for the Advancement of Science (AAAS). 

How Long Is Long COVID?

It remains unclear why some people recover from acute COVID-19 and others go on to have symptoms for months or even years. There is no evidence that the number of early symptoms is tied to the risk for long COVID, or that race or ethnicity makes a significant difference. 

“It seems that about 10 to 30% of patients who've had COVID will have lingering effects from it at 4 weeks,” says Alexander Truong, MD, a pulmonologist and assistant professor at Emory University in Atlanta. 

On a positive note, “about 65% of these patients will return to a normal level of health 2 to 3 weeks after initial infection.” But “a significant proportion will have continuous symptoms.”

Asked about the odds of long COVID becoming lifelong COVID, Truong says, “We don't know, is the short answer. I definitely have patients infected in March of 2020 who have had persistent symptoms for the last couple years, and then our patients who get better at 3 to 6 months. So, it's really difficult to answer.”

Among people with long COVID, “I think there will be a subset … that are going to have symptoms for a long time,” says Christian Sandrock, MD. Experience with chronic fatigue syndrome, which some believe is similar to long COVID, shows that some patients get better over time as well. “Some are going to have a waxing and waning course that's going to be really long, as in years.”

“Usually you'll see a trajectory where they're slowly improving but there's lots of ups and downs,” says Sandrock, director of critical care and vice chair for quality and safety at the University of California Davis Medical Center. 

“We know some people who are struggling even beyond the 12 weeks and who are really, really going into 6 months and 1 year,” agrees Bhramar Mukherjee, PhD, a professor of epidemiology and global public health at the University of Michigan School of Public Health in Ann Arbor. 

“As we have more follow-up data, I think we'll have further classification in terms of time,” she says. 

Don’t Believe Everything You Read Online

People with long COVID are looking online for information and seeking support through social media. “A lot of our patients spend their time on Facebook and other social media groups,” says Sandrock, who admits up front he has some bias against social media.

Knowing what information shared in these groups is accurate can be challenging, including claims of treatments to improve long COVID. “What we really say is almost an absolute is if anyone is saying ‘this definitely works,’ ‘this is awesome,’ ‘it is a quick fix,’ or ‘it's something that's helpful,’ don't go with it,” he says. 

These kinds of statements are “a big red flag,” Sandrock says. “If you're in a group where that is happening a lot, I would say jump ship.”

In contrast, groups that offer a lot of affirmation can be helpful, he says. “I know that sounds really kind of cheesy, but if the group has a lot of affirmation of both what the patient's going through, their symptoms and their struggles with the health care system, and their diagnosis, I think that's actually a good group.”

Steer Clear of Scams

Because uncertainty remains around the precise way long COVID develops and what treatments could be effective, it can lead to people being taken advantage of in these groups. Some people are even getting scammed out of money. 

“I would also say that I've had a lot of patients who've been victims of scams from these groups saying that if they pay hundreds of dollars for this concoction of vitamins or whatnot, they'll feel a lot better,” Truong says.

Scammers know people with long COVID can be vulnerable. “A lot of these patients suffer a lot, and a lot of these patients are grasping at straws to try to figure out anything that can make them feel better,” he says. “So, I would just caution: Within these social media groups, there are going to be people looking for victims.” 

His advice? “Be cautious about spending money on interventions that may or may not work.”

No Easy Answers, Yet

Doctors also do not know why some people with long COVID come in complaining of memory issues and “brain fog” while others mainly have shortness of breath. “Those are treated very, very different from each other,” Truong says. “So, unfortunately, there isn't a one-size-fit-all intervention that's going to help everybody.”

People at the UC Davis Medical Center often ask when they can get back to work

“And I honestly don't have a great answer,” Sandrock says.