Post COVID-19, Many Find They Are in for the Long Haul

A post-infection syndrome of chronic fatigue, neurological symptoms, and more can follow even the mildest cases and last for months.

We thought that COVID-19 was a short-term illness, but we were wrong. 

As the pandemic evolves, we’re starting to learn about the post-COVID-19 syndrome. Even if you don’t get severely ill during an initial SARS-CoV-2 infection, it’s possible to experience the aftermath for weeks, months, and maybe years. 

There is a precedence for post-viral syndromes following infections like mononucleosis, Lyme disease, SARS, and West Nile Virus. So, it’s not surprising that COVID-19 could have a long-lasting impact. But it will take years to fully understand the extent of the persistent symptoms, and the potential for chronic disability, even in young people. 

Post-COVID-19 Symptoms

Tens of thousands have reported symptoms for months after recovering from COVID-19. These, so-called, “long-haulers” most frequently complain of profound and extreme fatigue. Many of the symptoms resemble myalgic encephalomyelitis – chronic fatigue syndrome (CFS) – characterized by exhaustion that worsens with physical and mental activity. These long-haulers also have cognitive and neurological problems, including difficulties with concentration (brain fog) and memory, headaches, and insomnia. Some also have additional neurological symptoms with numbness and tingling, hand tremors, dizzy spells, equilibrium problems, and seizures. Others report fevers, night sweats, shortness of breath, gastrointestinal problems, excessive bruising, blood clots, and erratic heartbeats. 

These debilitating symptoms make it tough to get through the day, never mind getting back to work. For more information on other common symptoms, see the long-haulers support group Survivor Corps’ list at https://www.survivorcorps.com/reports

Who Is at Risk and How Long Do the Symptoms Last?

People aged 20 and up, no matter whether they had a mild or severe initial COVID-19 infection, or had negative viral and antibody tests, may have persistent symptoms. Most long-haulers were previously fit and healthy women with an average age between late 30s to mid-40s. So far, we can’t predict who will have symptoms lasting longer than a few months, and although many people have improved within five months, it’s too early to know whether the symptoms could last longer. 

What’s the Cause of Post-COVID-19 Syndrome? 

The underlying reason for persistent symptoms is unknown. But several hypotheses might help us understand what’s going on with these long-haulers. One is that post-COVID-19 syndrome and CFS are somehow related. Another explanation is that post-COVID-19 syndrome resembles dysautonomia, a disturbance of the autonomic nervous system that controls breathing, heart rate, and blood pressure and could explain many of the post-COVID-19 symptoms. It is possible that the neurological symptoms are related to SARS-CoV-2 neurotoxicity. Lastly, T lymphocytes may be reacting to leftover viral fragments that might cause chronic inflammation in the heart, lungs and gastrointestinal tract.

Tips for What to Do if You Are Experiencing Long-Term Symptoms After COVID-19

See your doctor and report your symptoms. Even if you didn’t have positive viral or antibody tests, you could still be experiencing a post-COVID-19 syndrome. 

Ask your doctor to refer you for rehabilitation and occupational therapy, reconditioning programs, and neuropsychologists for cognitive issues. 

And know that you’re not alone! Join a post-COVID-19 syndrome support community to help yourself and others, and to help doctors and public health professionals improve our understanding of the syndrome.  

Support Groups

https://www.survivorcorps.com/

https://twitter.com/longcovidsos?lang=en

https://www.c19recoveryawareness.com/

https://www.wearebodypolitic.com/covid19

The Best Way to Prevent the Post-COVID-19 Syndrome 

We don’t have a clue who will be afflicted or what percentage of people will suffer post-COVID-19 symptoms. Therefore, we must not be cavalier and expect that we’ll get a mild case, recuperate, and move on. Young or old, we are not invincible. Even young people can suffer from chronic debilitating symptoms. 

The best way to prevent these long-term symptoms is to avoid getting infected in the first place! You already know how to do this: avoid crowds, maintain social distance, wear a mask and face shield or goggles in public places, wash your hands frequently, and keep them off your face, and if you or others in your family are sick, self-isolate, and call the coronavirus hot-line.

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Dr. Michelle Epstein
Michelle Epstein is a medical doctor graduated from the University of Alberta in Canada, who has specialised in Internal Medicine at the University of British Columbia and Allergy and Clinical Immunology at Yale University. Since 2004, she has been a Lab Leader at the Medical University of Vienna’s Division of Immunology.

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