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 | | Daily reported coronavirus cases in the United States, seven-day average.The New York Times |
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 | | Medication being used to treat long Covid.Alex Wroblewski for The New York Times |
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Millions of people continue to suffer from long-term Covid symptoms. Studies estimate that 10 to 30 percent of people infected with the coronavirus may develop such symptoms, including cognitive issues, exhaustion, shortness of breath and many others. |
"It involves a very varied constellation of symptoms, and it's still quite mysterious," said my colleague Pam Belluck, a health and science reporter. "But a growing number of studies are shedding light on the range of symptoms and what they look like. And we're getting some scientific clues about what seems to be happening in the body." |
I spoke with Pam about our evolving understanding of the disease. |
There are different theories, but one of the leading theories has to do with the body's inflammatory reaction. |
When a virus enters the body, the immune system kicks into gear, it tries to fight the invader, and there's a surge of inflammation. And according to this theory, too much inflammation can cause a range of damage, including to blood vessels and parts of cells that can then limit the body's ability to use oxygen efficiently. |
Another theory is that the body's immune response didn't shut down after the acute threat from the virus was defeated. It's possible, scientists say, that there may be viral fragments that are hanging around at a very low level. They're giving the immune system the instructions to stay on guard when there's no reason it should be, and that over-activated immune response is causing symptoms. |
Do we know who is more likely to get long Covid? |
Recent research that followed a group of patients over time found that the people who were most likely to have long Covid two or three months after their infection had one or more of four biological factors. |
One factor was that they had a high viral load in their blood from early in the infection. Another has to do with something called autoantibodies, which are usually associated with diseases like lupus or rheumatoid arthritis. Basically, they are antibodies that mistakenly attack body tissues, and if certain autoantibodies were present at the time of a Covid infection, those patients were more likely to develop long Covid. |
The third one has to do with a virus called Epstein-Barr virus. It's very common and it's the virus that's often associated with mono. Many people get infected with Epstein-Barr virus early in life and it might cause no symptoms, and it then becomes dormant. But patients in this study who ended up having reactivated Epstein-Barr virus at the time of their Covid infection were more likely to develop long Covid. Other clues suggest that some pre-existing conditions, like diabetes, may also predispose people. |
If you're vaccinated and you get Covid, are you less likely to have long-term symptoms? |
Basically, we don't know. A couple of studies have suggested that if you've been vaccinated and are then infected with Covid, it might make you less likely to have lingering symptoms, but at least one study suggested that vaccination didn't make any difference. |
One thing scientists are saying is that, so far, many long Covid studies have suggested that people who became really sick and were hospitalized from their initial Covid infection are more likely to have serious long-term symptoms. So if you consider that vaccines generally put you at lower risk for acute outcomes like hospitalization, then it makes sense that there might be some positive effect on reducing long-term symptoms. But having a mild Covid infection definitely doesn't prevent long Covid — many people with long Covid did not get very sick initially or might even have had an asymptomatic Covid infection. |
What's your advice for people with long Covid? |
Don't be afraid to ask for help. There has been some skepticism about long Covid, including from primary physicians, and a lot of throwing up of hands. People may find that they go to their primary physician, and they get a scan, and nothing shows up. A lot of times there isn't anything physically that an X-ray or blood test can show. But try not to be daunted. It may be better to try to seek help from a long Covid clinic at that point where at least you will get recognition that what you're going through is a real thing and needs attention. |
There are also a bunch of support groups and patient-led research groups that can be very helpful for tips of where to go, or at least just for sharing experiences. And know you're not alone. There are a lot of people going through this. |
 | | A woman with long Covid practicing her physical therapy in Burr Ridge, Ill.Alex Wroblewski for The New York Times |
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We asked readers for approaches to long Covid that worked for them. We'll leave the medical advice to the doctors, but you had lots of advice and recommendations for ways to cope with and think about the illness. Here's a selection: |
"I got asymptomatic Covid in August 2020 from my parents, both of whom died of Covid three days apart. I still have cognitive issues — the inability to focus, particularly when listening; mental fatigue where my brain just shuts down; and poor long-term and short-term memory. I have developed coping mechanisms such as explaining to people with whom I have to carry on conversations to please understand I may ask many questions and I have difficulty remembering things. I also take notes of every phone call and conversation and anything I may need to remember. At first I was panicked by my loss of memory, however now I feel like I have surrendered to it and I just live in the present. In a weird way that has been a gift." — Giselle Kovac, Miami Shores, Fla. |
"It's been three months since Covid symptoms first appeared. Old injuries and conditions were exacerbated by Covid and all came to a head like a perfect storm. My doctors are at a loss to help me, so I am learning to listen to my body and resting as much as I can. Approaches that I practice are meditation, journaling, yoga, along with walking daily on our local rail trail. My best advice is to befriend your body and pay attention to its messages and heed them. Only you know best what is going on and what will help you." — Michele Gara, Connecticut |
"Symptom: headaches, fatigue and post-exertional malaise. What helped: strict pacing (carefully keeping activity levels within a threshold at which I do not experience symptoms). Symptom: Loss of former identity (no longer to dance salsa, go to the gym, hike, bike, do Pilates). What helped: finding a new outlet via ceramics classes at Gasworks NYC." — Elizabeth, Brooklyn |
"I have been experiencing smell and taste issues known as parosmia, where everything I smell and taste is distorted in the form of sewage. I found a company that helps people navigate their smell and taste issues both emotionally and physically. It's pretty cool because I was able to do an at-home diagnostic smell test with instant results, which validated that I am not crazy." — Paulina Giangregorio, Los Angeles |
"It is hard to explain long Covid to those who have not experienced it. It is even harder to explain invisible issues when things appear fine on the outside. The biggest help has been my ability to communicate the issues I'm experiencing with my colleagues. I recognize this is a luxury not everyone has, and for that I am extremely grateful. However, knowing I can step away from my computer or the stress of the daily grind has been amazing. Now if only I could convince myself, a self-diagnosed workaholic, that it is OK to take that time." — Tiffany Gaidos, Yorktown, Va. |
"I found an online long Covid survivors support group that was immeasurable in giving me lots of tips. If you can get into a long Covid clinic or a research trial, go for it. Otherwise, don't dismiss your own body's reactions, and methodically address each symptom with the appropriate specialist. Utilize any employee assistance programs and leave-of-absence options if you need more time to heal. Your health is more important than anything else. And finally, it can be a very difficult and long road, but as I know from my first go-around, recovery is possible. Don't give up." — Allison Durkin, Philadelphia |
What else we're following |
Let us know how you're dealing with the pandemic. Send us a response here, and we may feature it in an upcoming newsletter. |
| Lauren Steel compiled photos for this briefing. |
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