We will update this post as news comes out about COVID-19. This post was last updated on March 23, 2021. Many of the questions and answers below come from our February 4, 2021 webinar, “The Long Haul Consequences of COVID-19.”
What is meant by the term “COVID-19 long haul”?
A person living with continued long-term symptoms after a COVID-19 infection is considered a COVID-19 long-hauler. The medical term used by doctors and researchers is Post Acute Sequelae of COVID-19, or PASC.
Many long-haul patients have recovered from the worst impacts of COVID-19 and have negative tests, but continue to experience symptoms.
Between 10-30% of people infected with COVID-19 experience some long-term symptoms, according to the National Institutes of Health. The medical community has not yet determined why this happens to some people, and not others.
It can happen to anyone – young and old, and people with or without underlying health conditions. Patients who experienced no symptoms or had just mild symptoms can also be long-haulers.
Other people may not experience COVID-19 symptoms anymore, but the disease may have caused long-term organ damage.
What are COVID long-haul symptoms?
Persistent symptoms include:
- Debilitating fatigue
- Body aches
- Joint pain
- Shortness of breath
- Loss of taste or smell (even if this did not occur during the illness)
- Difficulty sleeping
- Muscle weakness
- Anxiety or depression or other mental health symptoms (even in those without a prior history)
- Brain fog
Brain fog has been one of the most perplexing symptoms. Many long-haulers report being easily confused or forgetful and unable to concentrate enough to even watch TV. In rare cases, this can happen to people who were in intensive care for a while. Yet, this is being reported by a variety of people, including those who did not get hospitalized. Some people have even reported that the brain fog resolved, only to come back days or even weeks later.
Why does it matter to talk about “long haul” for some COVID-19 patients?
Much of the focus has been on the death rate from COVID-19. Yet people who survive and continue to experience symptoms have not been taken seriously enough. This is an area where there is still so much unknown that dedicated research is needed. Long-haulers are often dealing with symptoms that are continuing to affect their daily lives and ability to work.
What are the health and life impacts for COVID long-haulers?
A year into this pandemic, we are just now starting to get a clear picture of the long-term impact of the disease. Some initial studies have shown that in people who had COVID-19:
- 75% are experiencing at least one symptom six months later
- 50% have been unable to return to work full time
- 88% continue to experience cognitive or memory issues
What are some theories about the long-haul COVID-19 symptoms?
While scientists still do not know why some people continue to experience COVID-19 symptoms months after acute illness, there are some theories.
One theory is that the virus may remain in the body in a small form. Another is that the immune system continues to overreact even though the infection has passed.
How does COVID-19 affect body systems?
While the initial focus was the lung damage caused by COVID-19, we now understand more about the impact on other parts of the body. Some long-term issues observed include:
- Kidney damage – anything from impaired function, to severe injury requiring dialysis
- New onset diabetes
- Clotting issues that have led to heart attacks and strokes
- Mental health issues, including new anxiety or depression
- Lung damage
- Dense scarring
- Worse than “smoker’s lungs”
- Lung collapse
- Shortness of breath
- Damage found in both symptomatic and asymptomatic patients
- Brain issues
- Loss of taste or smell
- Nerve issues, such as Guillain-Barre, which can lead to paralysis and respiratory failure
- Trouble focusing
- Changes in behavior
One study from the United Kingdom showed:
- 1/3 of COVID-19 patients are re-hospitalized within 5 months
- 1/8 of those die from complications from the disease
- Some developed heart problems, diabetes, chronic liver, and kidney conditions
- People younger than 70 are at higher risk for developing long-term conditions
Is the health damage from COVID-19 permanent?
It does appear that some organ damage is permanent. However, more research is needed. Patients will need to be followed over time to get a better understanding of the COVID-19 impact on long-haulers.
Why are COVID-19 survivors having more side effects from the two-dose mRNA vaccines?
People who have had COVID-19 have already primed their immune system with the virus. When they get their first dose of the vaccine, it almost acts like a booster. That’s why people who had COVID-19 may have more side effects. Their immune system already knows the virus in some form, so they are experiencing a more intense reaction.
Some long-haul patients report that their long-haul symptoms go away after they get the vaccine. More research is needed to determine how this is happening and why it happens in some people but not others.
Are there any studies being done on asthma patients and long-haulers?
There are no specific studies at this time. However, lung centers are tracking all symptoms to help get a better understanding of asthma and long-haul COVID-19 symptoms.
Researchers are tracking airway inflammation and inflammatory markers in the blood in post-COVID-19 patients. Knowing whether inflammation is elevated can help guide treatment.
Where should long-haul COVID-19 patients get their follow-up care?
A primary care doctor is a good place to start if you are experiencing long-haul COVID-19 symptoms. As this disease is so new, no one is an expert. If you see a specialist related to another condition, it’s a good idea to follow up on your COVID-19 symptoms.
Most major medical centers are starting to offer participation in long-haul COVID-19 research. You can go to www.clinicaltrials.gov to look for studies near you.
How long should patients who had COVID-19 wait until they get the vaccine?
In studies, patients had to wait 90 days. However, current guidance is that you may get the vaccine as soon as you have recovered.
If you are still feeling sick, you should not get the vaccine until you feel better. The exception to that is in patients who had monoclonal antibodies — they should wait 90 days.