In an interview with Alba Azola, MD, lead author of the AAPM&R autonomic dysfunction guidance statement and a member of the Johns Hopkins Post-Acute COVID-19 team, she emphasized several key issues related to Long COVID. These included the tendency of patients to minimize their symptoms, the uncertainty, and the importance of prevention and awareness.

When patients first come to Azola with concerns about lingering symptoms after recovering from a COVID-19 infection, she frequently encounters individuals who downplay or even deny their own experiences. “I find it very interesting because a lot of patients minimize their symptoms. A lot of patients don’t want to acknowledge some of the things that are happening,” Azola explained. This phenomenon, she believes, is due in part to the psychological burden of accepting that something is seriously wrong, especially in the context of a disease like COVID-19, where recovery is typically expected to happen after a few days.

Azola shared their ongoing research study on Long COVID, where patients who appear to have fully recovered from COVID-19 often reveal, upon further questioning, that they have been dealing with symptoms of Long COVID all along. “We’re doing a research study on Long COVID patients, and we’re looking for people who had a COVID infection but have fully recovered. And the people that we recruit who have had infection and are fully recovered, often, when we’re doing our questionnaires and we’re going through the process, we realize that they actually have Long COVID,” Azola said.

Once patients are made aware of their diagnosis, their most pressing question is often about the future: “What does this mean for me moving forward? What can I expect?” Unfortunately, there are no easy answers, as the recovery trajectory for Long COVID remains unclear.

“The reality is that we’re not 100% clear on what the expected recovery is,” Azola said. While some patients may recover within one or two years, others continue to experience persistent symptoms far beyond that point. “If we look at historic data from ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) that has been triggered by other infections, we know that this tends to be a relapsing-remitting issue,” she explained. ME/CFS has been a condition that has similarities to Long COVID, and it has long been linked to viral infections, further complicating efforts to define recovery timelines for the latter.

According to Azola, many patients want to return to normalcy. “They want to have their lives back. They want to be able to go back to work and do the things that they like and enjoy their family.” Although, for many, this remains out of reach. “It’s heartbreaking when you have to talk to them about, you know, the issues of the future without much to base your answer on. There’s a lot of uncertainty. So, just helping them navigate that uncertainty,” Azola said.

Historical Misinterpretations and Ongoing Stigma

Azola also touched on the historical context of Long COVID and its roots in ME/CFS, a syndrome that has often been mischaracterized as psychosomatic. She pointed to a long-standing bias within the medical community, which has historically dismissed conditions with a predominance of female patients and unexplained symptoms as “hysteria” or psychological in nature.

“Back in the 1800s, this was actually a diagnosis called ‘hysteria,’” Azola explained. “If you look at Osler’s textbook of medicine, one of the biggest and most authoritative books in medicine, they described neurasthenia, which was one of the names used for ME/CFS back in the 1800s. They described it as hysteric females with all these unexplained symptoms that were considered psychological or based on psychosomatic issues.”

This same pattern of dismissing real, debilitating symptoms as “psychosomatic” can be seen throughout medical history, including in the case of post-infection syndromes. Azola pointed out that there are numerous studies from the 1950s through the 1990s documenting outbreaks of symptoms very similar to what we see now in Long COVID, but these were frequently downplayed or ignored as mental health issues.

Azola explained that the increased awareness brought about by the pandemic and the role of media in connecting patients has been progressive. “This particular pandemic, the time in history when it happened, where patients were able to connect to each other on social media platforms and find each other and raise awareness, hopefully, is going to bring about a change in history,” she said. “And that’s why I think we need to continue to highlight Long COVID and the mechanisms that actually are producing these symptoms, which are not psychological at all.”

The Importance of Prevention

Given the ongoing uncertainties surrounding the pathophysiology of Long COVID, prevention becomes a key strategy in minimizing risk. “It’s important to note that Long COVID risks can be reduced by vaccination,” Azola said. “It’s important to note that Long COVID risk increases with reinfections. So, whenever there are increased numbers in the community, it’s important for people to make that educated decision in terms of masking and using social distancing, and basing those decisions on the knowledge that Long COVID could happen to anybody.”

A recent report from the RECOVER Initiative, published in August 2024, further underscores this risk, especially among adolescents. According to the data, Long COVID affects about 10% of adolescents aged 12-17, with a somewhat lower, but still significant, risk in younger children aged 6-11. “There’s also a risk of children getting Long COVID, and it can be quite debilitating as well,” Azola emphasized.

Azola concluded by emphasizing the need for continued awareness, early diagnosis, and prevention strategies to mitigate the long-term impacts of Long COVID. “It’s important to acknowledge that Long COVID is not just a consequence of severe illness; it can affect people who didn’t even have severe initial infections,” she said. “As more research funds are directed toward understanding Long COVID, it is crucial to recognize it as a legitimate, serious condition that warrants attention and support.”