Long COVID is a public health crisis, doctors say, with patients having severe symptoms

Some patients with lingering coronavirus symptoms for weeks or months, otherwise known as long COVID, are experiencing debilitating symptoms that are sometimes ignored in what doctors are calling a public health crisis.

“I would have doctors … who would look at me and say ‘There’s nothing wrong, everything is fine,” said Chimere Smith, a long COVID patient advocate who spoke during a Friday virtual panel with the Harvard T.H. Chan School of Public Health.

Smith and Hannah Davis, who founded the Patient-Led Research Collaborative for Long COVID, said many patients will have doctors dismiss symptoms or they simply don’t have the answers they are looking for when it comes to the mysterious disease that impacts some significantly and others not at all.

Davis, a long COVID sufferer herself, recalled some patients who told her that cognitive dysfunction caused by the condition made them to forget their child’s name or almost get hit by a car after forgetting to look before crossing the street.

During a video that was played during the briefing, some long COVID patients said they had suicidal thoughts, were bedridden or experienced intense pain of all kinds.

“Basically what we want to do is answer the questions patients have nonstop thoughts about that impact their lives,” Davis said.

Dr. Kavita Patel, a primary care doctor and fellow at the Brookings Institution in Washington, D.C., said some patients have been apprehensive about sharing their symptoms with her due to fear they’ll be dismissed.

Doctors hoping to help long COVID patients are feeling just as frustrated.

Patel said, “I’m still frustrated to this day because I have people where my only answer is ‘I really don’t know and I have no idea how to help you but I will try to find out.”

She added that families of patients are also left feeling stuck. “I see this look of sadness and desperation…it has this ripple effect that’s pretty devastating and hard for me to even acknowledge.”

Dr. Wes Ely, co-director of the Critical Illness, Brain Dysfunction and Survivorship Center at Vanderbilt University said long COVID is a public health crisis with a need to quell the notion that it’s just psychosomatic.

He said some of his long COVID patients have gone blind or deaf.

Awareness of long COVID and help for patients is starting to get better as the National Institutes of Health recognized the syndrome. Patient groups formed on social media are also driving the conversation and helping to find answers by sharing their experiences.

At least 11 million Americans are living with some form of long COVID, according to an estimate from The American Academy of Physical Medicine and Rehabilitation, with more than 200,000 with the condition in Massachusetts.