What we know so far about ‘long-haul COVID,’ the next chapter in our pandemic nightmare

In a new chapter of our collective COVID-19 nightmare, more and more reports are emerging of “long-haul” COVID-19, a debilitating and ongoing set of symptoms that persists for weeks or months in the aftermath of the disease, which is minimally understood by scientists. Here’s what we know so far:

Names

It’s referred to as post-COVID syndrome or long-haul COVID, and sufferers often call themselves “long-haulers.”

Symptoms

Fatigue is a big one, along with ongoing waves of ailments including fever, dizziness, diarrhea, tingling, brain fog, memory problems, mood swings, shortness of breath, loss of smell and taste, and other neurological symptoms that continue for months. For most, initial COVID-19 symptoms pass, leading them to believe that they’re out of the woods—and then symptoms return.

Who gets it?

Previously healthy 20- to 50-somethings who experience relatively mild to moderate initial COVID-19 illness, and thus do not formally get tested for the disease, which makes tying their subsequent illness to COVID-19 difficult. Women may suffer more often.

How bad is it?

Bad. “People are stuck in bed and they’re not able to go to work or look after their kids,” Timothy Nicholson, a neuropsychiatrist at King’s College London, told the Financial Times. He suffered long-haul COVID himself.

What patients say

“Before this, I was a fit, healthy 32-year-old,” one sufferer told The Atlantic. “Now I’ve been reduced to not being able to stand up in the shower without feeling fatigued. I’ve tried going to the supermarket and I’m in bed for days afterwards. It’s like nothing I’ve ever experienced before.”

What experts say

“The key is to take these patients seriously,” Igor Koralnik, chief of neuro-infectious diseases and global neurology at Northwestern Medicine, told the Wall Street Journal. “They need to have a thorough investigation by neurologists to try to determine how best to manage them and how to treat them.”

Where can I talk about it?

Online support groups are a good place to start.

What’s next?

Both SARS and Ebola have associated post-viral syndromes. Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, is encouraging scientists to track and study the syndrome.