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Long COVID is a complex diagnosis that encompasses many different problems, all of which have one thing in common — they occur in a person who had COVID.
Researchers have found that long COVID is associated with diabetes and lupus, but they are still learning what that relationship is.
People who have long COVID say it’s sometimes difficult just to walk across the room due to exhaustion.
While researchers were working overtime at the beginning of the COVID-19 pandemic to create a vaccine, people who had survived the disease began developing other complications. These health problems, commonly referred to as “long COVID,” included extended loss of taste and smell, lung damage, cognitive problems, and extreme exhaustion. Sean Collins, the host of the Hear Me Now podcast, recently spoke with several researchers and doctors who have been investigating the effects of long COVID. In other interviews, Hear Me Now producer Scott Acord spoke with patients who suffer from long COVID. Here are a few of the topics they discussed:
The Centers for Disease Control and Prevention defines long COVID as a range of new returning or ongoing health problems that people can experience four or more weeks following initial diagnosis. Is that definition appropriate?
Dr. Jim Heath, president of the Institute for Systems Biology in Seattle and one of the principal investigators of a landmark long COVID study: Our group found evidence suggesting long COVID really is a catchall term that covers about half a dozen different conditions that have just one thing in common: They occur after a person contracts COVID. For example, patients can have neurological issues, brain fog, respiratory issues, and hair loss. Some of these conditions are associated with autoimmune difficulties, and some aren’t. We are trying to define these disease conditions as something more than just long COVID.
What are some of your findings from the long COVID study?
Heath: There were about 300 patients in our study, and a significant number of them had Type 2 diabetes before having COVID, which told us people with that disease could be more susceptible to long COVID. Additionally, another virus called the Epstein-Barr Virus (EBV), which is also associated with the herpes simplex virus and Mononucleosis, had been reactivated in several patients, where it had laid dormant for years. Almost all of us have dormant Epstein bar virus in our blood, but it doesn’t affect us if it is inactive. In the patients we talked to, COVID caused this virus to reactivate, which told us there may be a relationship between those two viruses. Most importantly, we learned that many of the patients with long COVID also suffered from lupus, which is an autoimmune disease, before having COVID. However, we don’t yet understand the relationship between lupus and long COVID.
Why does long COVID appear to have a delayed appearance?
Heath: We noticed in particular that gastrointestinal symptoms of COVID were delayed after COVID. That could be just because it takes extra time for the virus to travel to the gut and cause problems. But we have found that people with long COVID also have developed auto antibodies, which are cells that are fighting against the body’s own proteins. We’re trying to map out the disease journey that patients’ immune systems take as they progress through acute disease into recovery. We’re finding that those disease journeys may look similar at first, but then they have different destinations, which causes different symptoms. Those autoantibodies are changing the direction of the disease.
If a person has lost their sense of smell, when can they expect it to return?
Dr. Jason Goldman, a specialist in infectious disease at the Swedish center for comprehensive care in Seattle and one of the principal investigators of the landmark long COVID study: We do not have an exact timeframe for the resolution of some long COVID features. However, I have interviewed many patients and have seen that the sense of smell does improve over time. I have had patients who have had symptoms up to a year and then improved. Other patients have said it’s not quite the same as before, but the intensity has diminished. Some patients who are suffering from long COVID might not get a complete return to normal health.
Many people with long COVID have to deal with both their symptoms and the reaction from people who think their symptoms aren’t real. What’s the impact on someone who’s sick and simultaneously being gaslighted?
Dr. Jim Jackson, a psychologist at Vanderbilt University Medical Center who leads several long COVID support groups: Our support group patients talk about this theme again and again: They see a doctor and talk very earnestly about the difficulties they’re having, and they frequently feel minimized and dismissed. That adds to any mental health challenges they’re having. So, they stop reaching out and retreat into a shell, deciding, “I don’t want to go through that again.” They feel shut down and are unlikely to continue pursuing care, meaning they are suffering with symptoms with no hope of relief.
What is it like to have long COVID?
TJ Roseberry: It affects my brain. It affects my memory. And I don’t know which (symptoms) are COVID and which are lupus.
Alicia Swift: I live in a small condo, and there are days when I can hardly walk from the couch to the refrigerator.
Suzanne Martin: Honestly, it is getting harder and harder. I hate to be negative about it, but I’m just exhausted.
The varicella-zoster (the virus that causes chickenpox) can manifest itself as shingles decades after chickenpox. Is it possible that we could see late onset of COVID, as well?
Jackson: I don't know the answer to that, but I would say that we don't necessarily know the trajectory of cognitive outcomes for people with long COVID, such as post-traumatic stress disorder or depression. That could either be very sad or very hopeful, if people who have cognitive problems at first can get better. Time will tell us whether there are things that get better or things that get worse. In the support groups I lead, I try hard to emphasize with patients that there are reasons to be hopeful. We had a patient who shared that she had gone canoeing for the first time in a couple of years. Sometimes you just have to wait.
People have found healing and community in our support groups. Even if all their symptoms don’t go away, they can find a way to be okay.
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