What to Know About Long COVID

If you’ve had COVID and feel like you haven’t been yourself since - you’re not alone. Dozens of readers have written in with questions about what to do about lingering symptoms, months after they were sick. Long COVID is now regarded as a serious condition and public health concern, and multiple agencies are allocating millions of dollars to its research.  What have we learned about Long COVID? Why does it only affect some people, and what can you do about it if it’s affecting you?

The National Institutes of Health (NIH) has built a nationwide study on the long-term effects of COVID, called the RECOVER Initiative - Researching COVID to Enhance Recovery. They’re bringing people from all walks of life together to answer questions about Long COVID (aka Post-Acute Sequelae of SARS-CoV-2 (PASC)), including scientists, clinicians, and patients, and we expect it to be groundbreaking research as they move forward through their 4-year study. At the link above, you can sign up for email updates and to be a volunteer in their studies, if interested. While there’s still a lot to learn, we’ll do our best to highlight what scientists have learned so far.
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What is Long COVID? 

Long COVID is characterized by a multitude of symptoms lingering long after you’ve had COVID - for weeks or months. This can happen to anyone, whether you experienced severe illness or you were asymptomatic. Some people say their symptoms have simply never gone away; others have seemingly recovered, only to have these lingering symptoms creep back in; and still others had no symptoms (and may not have known they had COVID) but are suddenly dealing with Long COVID symptoms.

While the breadth of Long COVID symptoms is broad, the most common symptoms are fatigue, shortness of breath, chronic cough, headaches, fever, anxiety, depression, pain, difficulty concentrating, and difficulty sleeping.
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Who is most affected by Long COVID?

Everyone, though elderly folks and people who experienced illness severe enough that they needed to be hospitalized were more likely to have long-haul symptoms. Interestingly, multiple studies have found that while men have been hit harder by COVID in general, Long COVID affects more women.

A research team at the University of Zurich felt that most of the studies being completed were of the elderly and hospitalized, so they decided to focus solely on “healthy adults” (18-50 years old) for three months to understand if the long-term effects of COVID-19 differed for them. Their results were similar to what NIH has found - fatigue, breathlessness, decreased lung or heart function, increase in psychiatric disorders, and neurological effects. In one study they looked at, 31% of participants had not been able to return to work 72 days post-infection. 

In a 6-month retrospective study, the incidence of Long-COVID symptoms varied by age group: “46.42% in the 10- to 21-year age group, 61.05% in the over 65s, 63.64% of those hospitalized, and 73.22% of those admitted to ITU” (a European ICU).

As we see with the above stats, Long COVID is reaching all age groups, regardless of the severity of their COVID infection. In an attempt to wrap this up into one number, the Office for National Statistics (ONS) in the UK followed 20k people who tested positive for COVID-19 from April 2020 to March 2021 and found that 13.7% of them were experiencing symptoms 12 weeks after their infection.
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Why do some people experience Long COVID while others don’t?

The short and honest answer is: we simply don’t know yet.

Another research group in the UK is trying to understand the biology of Long COVID, collecting blood and saliva samples as they monitor changes in the coagulation system and inflammation process, as well as molecules and protein markers. If they can pinpoint the mechanisms at play in our body, we can understand why it affects certain people and try to intervene and improve outcomes for those experiencing Long COVID.
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Can you get Long COVID if you’ve been vaccinated?

Yes, but if you were vaccinated and happened to have a breakthrough COVID infection, you are 50% less likely to experience Long COVID.
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If you’re experiencing Long COVID, how can you deal with lingering symptoms?

First, we really encourage support groups so you don’t feel alone as you work through this. Try to find a support group at a local university, or led by a licensed clinician, as the therapeutic tips you may receive in those sessions are more likely to be medically legitimate.

Next, we need to look at different rehab services available for whatever symptom(s) you may be dealing with. Since everyone’s experience varies so greatly, you’ll need to discuss with your doctor which symptoms you have and what can be done for each one. Examples may be counseling to support mental health, meditation or sleep aids, physical therapy for weakness, respiratory therapy, and so on. We’re speculating here because there aren't enough evidence-based treatment options available yet, so please discuss options with your doctor.

Survivor Corps is an excellent resource for those suffering with Long COVID that has a list of Post-COVID Care Centers (PCCC) across the world. These care centers are bringing together experts from multiple specialties to create treatment plans for Long COVID.

There are also medication trials to see if certain medications will decrease Long COVID symptoms. Nothing definitive yet, but we’ll do our best to update you as soon as scientists learn more. 
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In summary, there’s a lot of ongoing research on Long COVID right now - exciting and frustrating we don’t know more. At this time, the four pieces of advice we have for anyone suffering from Long COVID symptoms are:

• Sign up for RECOVER Initiative’s emails
• Search for university- or clinician-led support groups in your area
• Talk to your doctor about the right rehabilitation path for your lingering symptoms
• If you’re a Kinsa user, keep your eye on your email - we’ll update you if we learn about any new research findings that may affect you for the better.
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