How Can You Help?
Share your StorySupport UsGet Resources

Post-COVID Syndrome or Post-Sepsis Syndrome?

January 25, 2021

Since the initial outbreak of COVID-19, there have been reports of many people living with a new condition named post-COVID syndrome. These people are young and old, and they experience symptoms long after the infection has passed. Called long-haulers, they can have symptoms that last weeks or months after they first became ill. But given that severe COVID-19 is viral sepsis, could this really be post-sepsis syndrome instead?

It isn’t unusual for someone who had a virus to continue feeling ill or experience symptoms for weeks after. This is called post-viral fatigue or post-infection fatigue, but what COVID survivors are experiencing seems to be more than that.

In an interview with the New York Times, Zijian Chen, MD, from Mount Sinai Hospital in New York City said, “We’ve heard of illnesses, viral illnesses, that have a prolonged post-viral phase … But these usually don’t last for the months and months that we see here. And because of that, we’re a little surprised that this is happening. It tells us how much we don’t know about this illness.”

In May 2020, Mount Sinai Hospital opened the country’s first Post COVID Care Center. Dr. Chen is the head of the center. More have since opened across the United States and elsewhere.

Long-lasting symptoms led to post-COVID syndrome name

The COVID-related symptoms that linger after the initial infection may not always be obvious to another person, but they exist. According to Houston Methodist, a medical center in Texas, testing shows changes in the body in many cases. For example, an MRI of the heart may show myocarditis – inflamed heart muscle. And what might be particularly concerning is that people don’t have to have severe case of COVID-19 to develop some of the long-term problems:

“Post-COVID syndrome can be seen in people who went to the ER with concerning symptoms or who had advanced symptoms that required a brief hospital stay, but it can also occur in people who had mild symptoms and self-treated at home,” warns [Sandeep Lahoti, MD, a gastroenterologist at Houston Methodist who is leading the COVID-19 Recovery Clinic]. “The important thing to note is that these are people who might not have required care from a specialist during their actual illness, but may now benefit from specialized care as these lingering symptoms continue to affect their daily lives.”

Post-COVID syndrome or post-sepsis syndrome?

On September 21, 2020, the American Medical Association added the following to their website:

“Surviving severe COVID-19 means surviving viral sepsis. And while there is little published data on long-term outcomes of severe COVID-19, what is known is that recovering from sepsis caused by other pathogens is a long and difficult process that includes, among other things, increased odds of cognitive impairment and functional limitations—even down to inability to bathe, toilet or dress independently.”

Post-sepsis syndrome

Post-sepsis syndrome was only recognized a little over 10 years ago.

PSS symptoms include:

  • Difficulty sleeping, either getting to sleep or staying asleep
  • Fatigue, lethargy
  • Shortness of breath, difficulty breathing
  • Disabling muscle or joint pain
  • Swelling in the limbs
  • Repeat infections, particularly in the first few weeks and months following the initial bout of sepsis
  • Poor appetite
  • Reduced organ function, e.g. kidney, liver, heart
  • Hair loss
  • Skin rash

Psychological, cognitive, or emotional –

  • Hallucinations
  • Panic attacks
  • Flashbacks
  • Nightmares
  • Decreased cognitive (mental) functioning
  • Loss of self-esteem
  • Depression
  • Mood swings
  • Difficulty concentrating
  • Memory loss
  • Post-traumatic stress disorder (PTSD)

These symptoms are almost identical to post-COVID syndrome, with one notable exception: losing the sense of taste or smell. However, the loss of taste or smell isn’t related to severe COVID infection. In fact, it’s believed that the loss of these senses may signal a less severe case:

“Patients who were hospitalized for COVID-19 treatment were significantly less likely to report anosmia or loss of smell—26.9% compared to 66.7% for COVID-19-infected persons treated as outpatients. Similar percentages were found for loss of taste, dysgeusia.”

Statistics regarding post-COVID syndrome

An article published in The Lancet earlier this month looked at a number of people with COVID-19 who developed post-COVID symptoms.

The researchers found that six months after discharge, over half (58%) had new or worsening difficulty in completing activities of daily living. Employment was affected too. Of 195 employed people, only 117 went back to work and 30 only with reduced hours; the remaining 78 people could not go back to work.

After six months at home, 76% of the group had at least one of these symptoms:

  • Fatigue/muscle weakness
  • Difficulty sleeping
  • Experienced hair loss
  • Difficulty with smell
  • Loss or change in taste
  • Difficulty with mobility

Smaller study had similar post-COVID syndrome findings

Another, smaller study of people who had “non-critical” COVID-19, showed similar findings. Along with the symptoms listed above, they also complained of:

  • Weight loss
  • Severe shortness of breath or difficulty breathing
  • Chest pain
  • Heart palpitations
  • Headaches
  • Skin rashes
  • Joint pain
  • Muscle pain
  • Digestive (gastrointestinal) upset
  • Fever

Other studies have found similar results.

Rates of post-sepsis syndrome

Almost 60% of sepsis survivors experience worsened cognitive (mental) and/or physical function once they are discharged from the hospital. Older survivors find that they have, on average, one or two new limitations in activities of daily living (bathing, dressing, preparing meals, managing finances, etc.).

If they were treated in an intensive care unit (ICU), sepsis survivors were more likely to report symptoms of post-traumatic stress disorder, or PTSD, than those with other conditions who were also treated in an ICU.

Lasting physical issues include amputations (about 1% of survivors have had to have at least one amputation of a digit or limb); organ failure (heart or kidney); and repeat infections and sepsis.

Finally, people recovering from sepsis are at increased risk of stroke and heart attack in the first four weeks after hospital discharge. And those aged 20 to 45 years are at a higher risk for these events compared to those over age 75.

Regardless of the name used, survivors who are living with long-lasting effects from COVID-19 need support. By identifying the similarities between post-COVID syndrome and post-sepsis syndrome, COVID survivors could find this support from sepsis survivors, regardless of their initial infection.

If you or someone you care for has COVID-19 and is showing signs of sepsis, this is a medical emergency. If you are a COVID survivor and you have lasting symptoms, visit the Sepsis Survivor page, where you will find information, including video resources and frequently asked questions.