Jonathan P. Baird

So much of the coverage of COVID-19 has focused on statistics about the number of deaths and the number of infections. While it is important to have an accurate statistical picture of the pandemic, the problem with this picture is what it leaves out.

The statistics fail to mention the many thousands of COVID-19 patients who have suffered for months from unrelenting and unpredictable symptoms. These are the COVID-19 long-haulers. They are living with the disease and their situation has been downplayed and ignored.

I think the best reporting about the long-haulers has been done by Ed Yong who writes for the Atlantic. Yong points out that we are maintaining incorrect stereotypes about who is being affected by the pandemic. President Trump has incorrectly pushed the view that COVID-19 is only affecting elderly people with pre-existing conditions. The elderly are not the only ones suffering.

Yong says that among the long-haulers the typical victim is a 44 year old woman who was previously fit and healthy. He says there is an inaccurate caricature that COVID-19 kills some but is mild for the rest. He challenges the view it is “mild” for many.

There are a large number of stories out there about the on-going suffering of the long-haulers with a wide constellation of symptoms reported. Heart abnormalities, shortness of breath, fatigue, fevers, headaches, brain fog, memory loss and post-exertional malaise are all reported. Yong says the symptoms resemble dysautonomia, a condition where the autonomic nervous system is not working properly.

WBUR reported the story of Diana Berrent, a suburban mom from New York, who has experienced debilitating symptoms even after tests showed she no longer carried the virus. Berrent has had symptoms for the last seven months including vision deterioration, gastrointestinal tract complications and recurring headaches. She found out she has borderline glaucoma, a condition that could cause blindness.

Berrent formed an on-line group, Survivor Corps, where members document their symptoms and provide support. She told WBUR that Survivor Corps members are experiencing damage to almost every organ system because coronavirus is a vascular disease.

She said that respiratory issues are the most common long-term symptom of the long-haulers. She also noted neurological issues, particularly “soul-crushing headaches”.

WBUR also told the story of Dr. Scott Krakauer, a 40 year old psychiatrist from New York. He had chills and fevers for nearly two weeks in April before testing positive. He closed himself off in a room at his home to protect his wife and two children.

He lost his sense of taste and smell. He developed a violent cough that would not stop and he was eventually coughing up blood. His doctors reported he was having a cytokine storm in his throat. Lung inflammation and fluid buildup led to respiratory distress. It got so he could not swallow and he started to choke on his food. After he lost 15 pounds, his family brought him to the hospital.

His doctor put him on IV steroids which helped to decrease the swelling in his throat. The treatment, which opened his throat, saved his life. He survived but months later he is still feeling winded on short walks and he has trouble swallowing and talking.

Business Insider interviewed numerous people who have survived coronavirus but who cannot shake the symptoms months after they were diagnosed. Elissa Miolene, a 27 year old from New York City, was quoted:

“It is now 115 days later and I am still feeling the exact same symptoms. Life for me is waking up in the middle of the night and crying because I’m in so much pain and not knowing why.”

She now relies on virtual physical therapy to help address her constant back and chest pain. She said,

“I can be walking down the street and be perfectly fine. And then I’m heaving and cannot walk another step.”

The Center for Disease Control (CDC) does now recognize that COVID-19 can result in prolonged illness but the matter of people living with ongoing coronavirus symptoms has been largely brushed aside.

President Trump gives himself an A+ on handling the virus while pretending this population does not exist. He does not want to talk about it. Response to the long-haulers is consistent with the overall Trump Administration approach to the virus: minimize the story, sideline it and move on.

There are many thousands living with the virus who are not sick enough to be hospitalized but they are experiencing long-term effects. Physicians remain stymied by the persistence of COVID-19 symptoms. There is no certainty about why symptoms last and how long they will last.

I am expecting a disability wave in 2021 because even though symptoms wax and wane for many they are disrupting work and everyday activities.

Our knowledge about COVID-19 is still preliminary, tentative and evolving. There are more questions than answers. It is a certainty though that long-haulers are a population who will be commanding more attention as the pandemic unfolds.