What researchers found as they drew our blood, harvested our stem cells, ran tests to check our brain function, subjected us to magnetic resonance imaging (MRI), strapped us to tilt tables, do tests on our heart and lungs and much more. have helped prepare doctors everywhere for the flood of long-running COVID cases that have occurred alongside the pandemic.
Instead, we are all waiting for answers.
In 2012 I had a sudden fever and dizziness. The fever improved, but over the next 6 months my health declined and by December I was almost completely bedridden. The many symptoms were overwhelming: muscle weakness, near-crippling fatigue, and brain dysfunction so severe that I had trouble remembering a four-digit PIN for 10 seconds. Electric shock-like sensations ran up and down my legs. At one point, while I was trying to work, the letters on my computer monitor started spinning, a terrifying experience that I only learned years later was called oscillopsia. My heart rate skyrocketed as I stood up, making it difficult to stay upright.
I learned that I had post-infectious myalgic encephalomyelitis, also given the unfortunate name chronic fatigue syndrome by the CDC (now known as ME/CFS). The illness ended my career as a science and medical journalist and left me 95% bedridden for over 2 years. While reading about ME/CFS, I discovered a story of a disease that is not only neglected, but denied. It left me desperate.
In 2015, I wrote to then-NIH Director Francis Collins, MD, and asked him to reverse decades of National Institutes of Health neglect. To his credit, he did. He moved responsibility for ME/CFS from the small Office of Women’s Health to the National Institute of Neurological Disorders and Stroke, and asked that institute’s chief of clinical neurology, neurovirologist Avindra Nath, MD, to design a study that explored the biology of the disorder.
But the coronavirus pandemic interrupted the study, and Nath turned his energies to autopsies and other COVID-19 research. Although he is dedicated and empathetic, the reality is that NIH’s investment in ME/CFS is small. Nath divides his time between many projects. In August, he said he hoped to submit the study’s main paper for publication “within a few months.”
In the spring of 2020, I and other patient advocates warned that a wave of disability would follow the novel coronavirus. The National Academy of Medicine estimates that 800,000 to 2.5 million Americans had ME/CFS before the pandemic. Now, with billions of people worldwide infected by SARS-CoV-2, the virus that causes COVD-19, the ranks of people whose lives have been disrupted by post-viral illnesses have swelled in almost countless millions.
In July 2020, the director of the National Institute of Allergy and Infectious Diseases, Anthony Fauci, said that for a long time, COVID is “strikingly similar” to ME/CFS.
It was, and is, an avoidable tragedy.
Along with many other patient advocates, I have watched in despair as friend after friend, person after person on social media, describe the symptoms of MS/CFS after COVID-19: “I got a little sick”; “I thought I was fine; then came overwhelming bouts of fatigue and muscle pain”; “my limbs tingle”; “my vision is blurry”; “I feel like I have an endless hangover”; “my brain stopped working”; “I can’t make decisions or complete daily tasks”; “I had to stop exercising after the short sessions flattened me out.”
Also, many doctors have denied the existence of COVID for a long time, just as many have denied the existence of ME/CFS.
And it’s true that some, or maybe even many, people with brain fog and fatigue after a mild case of COVID will recover. This happens after many infections; it’s called post-viral fatigue syndrome. But patients and a growing number of doctors now understand that many long-term COVID patients could and should be diagnosed with ME/CFS, which is lifelong and incurable. Mounting evidence shows that their immune systems are out of whack; their nervous system is dysfunctional. They fit all the published criteria for MS, which require 6 months of uninterrupted symptoms, most notably post-exertional discomfort (PEM), the name for getting sick after doing something, almost anything. Exercise is not recommended for people with PEM, and increasingly, research shows that many people who have had COVID for a long time are also unable to tolerate exercise.
Several studies show that about half of all long-term patients with COVID meet the criteria for a diagnosis of ME/CFS. Half of a large number is a large number.
A researcher at the Brookings Institution estimated in a report published in August that 2 to 4 million Americans are no longer able to work due to prolonged COVID. This represents up to 2% of the country’s workforce, a tsunami of disability. Many others work reduced hours. By letting a pandemic virus run free, we have created a sicker and less capable society. We need better data, but the numbers we have show that MS/CFS after COVID-19 is a big and growing problem. Each infection and re-infection represents a roll of the dice that a person can become very sick and disabled for months, years, a lifetime. Vaccines reduce the risk of long-term COVID, but it’s not entirely clear how they do it.
We will never know if the NIH study I participated in could have helped prevent this pandemic within a pandemic. And until they’re published, we won’t know whether the NIH has identified promising leads for treatments. Nath’s team is now using a very similar protocol to the ME/CFS study I was involved in to investigate long-term COVID; they have already brought seven patients.
There are no FDA-approved medications for the core features of ME/CFS. And because ME/CFS is rarely taught to medical students, few front-line doctors understand that the best advice to give suspected patients is to stop, rest, and go—that is, slow down when symptoms get worse, rest aggressively and do less. than you feel you can.
And so millions of long-term COVID patients stumble, lives dwindling, into a nightmare of being terribly ill with little help: a terrible theme that repeats itself over and over again.
Time and time again, we hear that for a long time, COVID is mysterious. But much of it is not. It is the continuation of a long history of diseases caused by viruses. Correctly identifying long-term COVID-related conditions removes much of the mystery. While patients may be surprised to be diagnosed with a lifelong disorder, a proper diagnosis can also be empowering, connecting patients to a large and active community. It also removes uncertainty and helps them understand what to expect.
One thing that has given me and other ME/CFS patients hope is seeing how long COVID patients have organized and become vocal advocates for better research and care. More and more researchers are finally listening, realizing that there is not only so much human suffering to contend with, but an opportunity to unravel a thorny but fascinating biological and scientific problem. Their findings in long-term COVID are replicating earlier findings in ME/CFS.
Postviral disease research, as a category, is moving faster. And we have to hope that the answers and treatments will be soon.