While the pandemic is largely behind us, millions of people are still experiencing long-lasting chronic pain, brain fog, shortness of breath, chest pain, and intense fatigue. Those who had tested positive for SARS-CoV-2 infection can seek care at post-COVID clinics, but many more people with the same symptoms never received a positive test or treatment for this often-debilitating condition. Many can’t even get in to a COVID clinic.

Hidden COVID

Researchers at Northwestern Medicine now know than many of the people who initially tested negative for COVID-19 were exposed to the virus after all. By using very sensitive immunologic assays, researchers found that 41 percent of people with long COVID who initially tested negative for COVID-19 have antibody or T-cell responses to the virus, which show that they were infected.

The other 59 percent of people who have long-haul symptoms, but who still test negative, are indistinguishable clinically from those with detectable response, Igor Koralnik, MD, chief of neuroinfectious diseases and global neurology at Northwestern Medicine, told Bottom Line Health.

“We call them post-viral syndrome patients, and we care for them similarly to those with a positive test.” (There are some similarities between long COVID and chronic fatigue syndrome, but long COVID has distinct characteristics.)

In the study, 93 percent of the people who had initially tested negative were women. “All post-COVID clinics in the United States that I know of have seen a higher frequency of women than men,” Dr. Koralnik said. “We think long COVID is a new autoimmune syndrome, and women are more likely than men to develop autoimmune diseases, such as multiple sclerosis, rheumatoid arthritis, and lupus.”

Accessing care

In addition to the challenges of managing a difficult condition like long COVID, patients often face barriers to care. There are only 64 COVID centers in the United States, and of those, only 30 percent will see patients who have not tested positive for COVID-19. That’s part of the reason why more than 2,100 people have traveled from 44 states to visit the Northwestern Medicine Comprehensive COVID center, which accepts patients without physician referral and doesn’t require a positive COVID test to be seen.

If you have symptoms of long-COVID, whether you’ve had a positive test result or not, you may need to travel to a specialty clinic for care. In some cases, you can use telemedicine to visit a center far from your home, but you’ll need to see a physician who is licensed to practice medicine in your home state. You can find a map of post-COVID centers by state at https://www.survivorcorps.com/pccc.

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