Long-COVID is a whole new disease

Here’s what else you should know about the condition that keeps some people sick more than a year after a COVID infection

While scientists are clear that a SARS-CoV-2 infection is a trigger for long-COVID, little else is understood about the condition that affects between 10% and 80% of those diagnosed with COVID.

Researchers have several theories: One study suggested that the coronavirus might reactivate latent viruses, including the Epstein-Barr virus, causing long-term symptoms, and another indicated that an ineffective immune response to COVID failed to trigger the antibodies needed to fight the infection, leading to lingering symptoms.

Researchers agree on one theory no matter what causes it: Long- COVID is not a lingering COVID infection.

Long-COVID is a whole new syndrome, a whole new disease, researchers believe.

Severe infections increase the risk

Patients with long-COVID primarily fall into three categories: those who never recovered after their initial infection; those who developed long-COVID symptoms following COVID-related hospitalization; and those who continued experiencing symptoms after they recovered from their initial COVID battle.

Among those groups, there seems to be a link between how severe their COVID infections were and the risk of becoming a long hauler.

Doctors at the ReCOVer Clinic at Cleveland Clinic have reported that people who suffer from long-COVID and were hospitalized, treated in the intensive care unit, or were placed on ventilators have tissue and organ damage are far different from COVID sufferers who were never hospitalized.

But that doesn’t mean those who had mild infections are risk-free. For example, 80% of long-COVID patients who received treatment at the ReCOVer Clinic were never hospitalized, and doctors at other extended COVID treatment centers are seeing similar patterns.

Vaccinations help

A study of 13 million people found that those who received the COVID vaccine were 15% less likely to develop long COVID than those who were unvaccinated; smaller studies have shown that those who received two doses of the COVID vaccine reduced their risk of developing long-COVID in half.

Research is ongoing

The National Institutes of Health started the RECOVER Initiative, a $1.15 billion project to research long-COVID. Hundreds of clinical trials are recruiting long haulers to understand the condition and possible treatments better.

But clinical research takes time. That’s why no one can offer answers about long-COVID right now, and researchers believe it may take several years before that happens.

Delaying treatment affects recovery

The latest data shows that long-COVID symptoms lasted an average of 14.8 months among patients who were not hospitalized for COVID, with some patients experiencing long-COVID symptoms for 18 months following their initial COVID infection.

While there is no cure for long-COVID, seeking a diagnosis and treatment is still essential.

Long-COVID treatment centers can help

Long-COVID centers have been set up in 48 states and are staffed with multidisciplinary health care teams to help long haulers manage their symptoms.

Long-COVID treatment centers are helping many people with the condition, but a long list of questionable companies with vague promises also are making unfounded promises to help.

The list of COVID scams is getting longer. The companies promote diagnoses and treatments with blood tests, special diets, breathing exercises, and cocktails of supplements. But the treatments don’t have science to support the claims.

Doctors treating long-COVID and the Department of Health and Human Services warn vulnerable people against potential scams: “If it sounds too good to be true, it probably is.”