by Dr. Cory Franklin and Dr. Robert Weinstein
William Faulkner once wrote, “The past is never dead. It’s not even the past.” He meant that events from the past can still affect us now or in the future. He could have been referring to COVID-19 infections, for there is growing concern that the pandemic could have its own set of health consequences years or even decades from now, so-called long COVID-19, and this may ultimately exact a huge economic and social toll on the world.
Most medical infections leave no lasting effect after patients recover, but some can cause devastating harms long after resolution. The best known is rheumatic heart disease, caused by damage to the heart valves from an inadequately treated streptococcal throat infection, otherwise known as rheumatic fever.
Before the advent of penicillin, in the 1920s, rheumatic fever was the leading cause of death in the U.S. in those 5 to 20 years old. Even for those who recovered, the infection caused heart damage in tens of thousands. Many suffered premature death from heart failure or damaged heart valves. Others, as middle-aged or elderly adults, needed heart valve replacements. (A particularly illustrative example: One of us is caring for a patient who had a heart valve replacement in 2011 for a bout of rheumatic fever in the 1930s.)
Another possible instance of long-term infectious sequela is a special form of brain inflammation, or encephalitis, that occurred during and after the influenza pandemic of 1918. (There has been debate in medical circles for years about the connection between the influenza pandemic and this type of encephalitis, but there is at least circumstantial evidence to connect the two.) It affected primarily young adults, some of whom suffered for decades with devastating neurological symptoms, including Parkinson’s disease. In 1973, the eminent neurologist Oliver Sacks wrote a book about his experience with some of these encephalitis patients called “Awakenings,” which was made into a 1990 Oscar-nominated movie starring Robin Williams and Robert DeNiro.
Studies have now demonstrated that a constellation of symptoms may persist for weeks, months and possibly years — we don’t know yet — after recovery from COVID-19 infection. These symptoms appear to be primarily neurological (difficulty in concentration or “brain fog,” headaches, depression, memory or sleep disorders); cardiovascular (heart rhythm or blood pressure problems); or related to severe fatigue. While these are the most common symptoms, virtually any organ in the body may be affected by invasion of the virus and the inflammatory response it causes. Most concerning is that no one is immune from these symptoms after COVID-19 infection — from those with the mildest cases to those who require intensive care hospitalization.
Consider that at present there have been more than
40 million cases of COVID-19 diagnosed in the U.S. and more than 200 million worldwide. Estimates of the occurrence of long COVID-19 symptoms range from under 5% to as high as 40% of all COVID-19 cases; so, we are talking about potentially millions to tens of millions of patients, with millions more in the future. The costs — medical, rehabilitative and psychological — are incalculable. There is still ample reason to protect oneself and others through vaccination, masking and social distancing.
Without question, long COVID-19 is a real health problem, but no one is sure how much of a problem. The symptoms are nonspecific and often ill-defined. Many could be related to any acute or chronic illness — or to no illness whatsoever. That is why it is essential to perform systematic studies of long COVID-19. The scientific tools — CT scans, MRIs, computers and artificial intelligence — now exist to understand long COVID-19 and avoid the uncertainty of the question of sequelae that followed the flu pandemic when such tools were not available.
The United Kingdom has created a long COVID-19 task force. Initial data indicate that an estimated 970,000 people are experiencing long COVID-19 in the U.K. out of more than 7 million diagnosed cases of COVID-19. Although several hundred thousand patients have been suffering symptoms for a year or more, only a small percentage have been referred for special care.
Here in the U.S. last December, Congress provided $1.15 billion over four years for the National Institutes of Health to study the incidence, causes, risk factors and ways to prevent long COVID-19. (There is anecdotal evidence that vaccination may prevent or at least mitigate some symptoms of long COVID-19.)
The Centers for Disease Control and Prevention has also launched studies of long COVID-19, and one of the most comprehensive multistate investigations is centered in Chicago at Rush University Medical Center. The study is attempting to enroll 4,800 patients, COVID-19-positive and COVID-19-negative, to compare the two groups. It will examine the role the virus plays in who, what, when and how often patients suffer long-haul symptoms, including a variety of the problems that can diminish the quality of life, such as fatigue and sleep disturbances. For more information on this local study, go to covidinspire.org.
We are hardly done with acute COVID-19. Many thousands of patients will die of the acute disease in the near future. It is a sobering prospect that those who survive may believe they are done with COVID-19, only to later find that COVID-19 is not done with them. Society may be dealing with this problem well into the late 21st century and in some cases perhaps even into the 22nd century.
Where COVID-19 is concerned, Faulkner’s words ring true.
Dr. Cory Franklin is a retired intensive care physician. Dr. Robert Weinstein is an infectious disease specialist at Rush University Medical Center.
