September 15, 2022 – It should have been the start of new understanding of a debilitating disease. In May 2017, I was patient #4 in a cohort of 20 patients enrolled in a profound and intensive study at the National Institutes of Health aimed at getting to the root of the causes of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, a disease that causes extreme fatigue, trouble sleeping, and pain, among other symptoms.
What researchers found when they took our blood, collected our stem cells, performed tests to check our brain function, gave us magnetic resonance imaging (MRI), strapped us to tilting tables, performed tests on our hearts and lungs, and much more helped prepare doctors everywhere for the avalanche of long COVID cases that accompanies the pandemic.
Instead, we are all still waiting for answers.
In 2012 I suddenly got fever and dizziness. The fever got better, but over the next 6 months my health deteriorated and by December I was almost completely bedridden. The many symptoms were overwhelming: muscle weakness, almost debilitating fatigue, and brain dysfunction so severe I couldn’t remember a four-digit PIN for 10 seconds. Electric shock-like sensations ran up and down my legs. Once when I was trying to work, letters on my computer monitor began to whirl around, a terrifying experience that I didn’t learn until years later was called oscillopsia. My heart rate would skyrocket when I stood, making it difficult to stay upright.
I learned that I had post-infectious myalgic encephalomyelitis, also unfortunately named Chronic Fatigue Syndrome (now commonly known as ME/CFS) by the CDC. The illness ended my career as a newspaper science and medical reporter and left me 95% bedridden for more than 2 years. As I read about ME/CFS, I discovered a history of a disease that was not only neglected but also denied. It left me desperate.
In 2015, I wrote to then-NIH Director Francis Collins, MD, asking him to reverse decades of inattention from the National Institutes of Health. To his credit he did it. He shifted responsibility for ME/CFS from the small Bureau 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 examining the biology of the disorder.
But the coronavirus pandemic put the study on hold, and Nath devoted his energy to autopsies and other investigations into COVID-19. While devoted and empathetic, the reality is that the NIH’s investment in ME/CFS is tiny. 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 before the pandemic, between 800,000 and 2.5 million Americans had ME/CFS. Now that billions of people worldwide have been infected with SARS-CoV-2, the virus that causes COVID-19, the number of people whose lives have been turned upside down by post-viral diseases has swelled to nearly untold millions.
Back in July 2020, Anthony Fauci, MD, director of the National Institute of Allergy and Infectious Diseases, said that long COVID ME/CFS was “strikingly similar.”
It was and is a preventable tragedy.
Along with many other patient advocates, I have watched in despair as friend after friend, person after person, took to social media to describe the symptoms of post-COVID-19 ME/CFS: “I got sick easily”; “I thought I was fine – then came overwhelming fatigue and muscle aches”; “my extremities tingle”; “My vision is blurry”; “I feel like I have an endless hangover”; “My brain has stopped working”; “I can’t make decisions or complete daily tasks”; “I had to stop exercising after short sessions knocked me out.”
Additionally, many doctors deny that COVID has long existed, 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 will recover from a mild case of COVID. This happens after many infections; It’s called post-viral fatigue syndrome. But patients and a growing number of physicians now understand that many long-COVID patients could and should be diagnosed with ME/CFS, which is lifelong and incurable. Mounting evidence shows that their immune systems are going haywire; their nervous system dysfunctional. They meet all published criteria for ME requiring 6 months of uninterrupted symptoms, specifically Post-Exertional Malaise (PEM), the name for getting sick after doing something, almost anything. Exercise is not recommended for people with PEM, and increasing research shows that many people who have had COVID for a long time also cannot tolerate exercise.
Multiple studies show that about half of all long-COVID patients are eligible for a ME/CFS diagnosis. Half of a big number is a big number.
A Brookings Institution researcher estimated in a report published in August that 2 to 4 million Americans are unable to work due to long-term COVID. That’s up to 2% of the country’s workforce, a tsunami of disabilities. Many others work short-time. By unleashing a pandemic virus, we have created a sicker, less able society. We need better data, but the numbers we have show that post-COVID-19 ME/CFS is a big and growing problem. Every infection and reinfection represents a roll of the dice that a person can become horribly ill and disabled for months, years, a lifetime. Vaccines reduce the risk of a long COVID, but it’s not entirely clear how well they do it.
We’ll never know if the NIH study I participated in could have helped prevent this pandemic within a pandemic. And until they are published, we won’t know if the NIH has identified any promising leads for treatments. Nath’s team is now using a protocol very similar to the ME/CFS study I participated in to study long COVID; they’ve already brought in seven patients.
There are no FDA-approved drugs for the core functions of ME/CFS. And because ME/CFS is seldom taught to medical students, few frontline doctors understand that the best advice for suspect patients is to stop resting and picking up the pace — which means slowing down if symptoms worsen, aggressively resting and doing less than you think you can.
And so millions of long-lived COVID patients with diminished lives stumble into a nightmare in which they are horribly ill with little help – a horrible theme that keeps repeating itself.
Again and again we hear that long COVID is mysterious. But a lot of it isn’t. It is the continuation of a long history of viral diseases. Properly identifying long-COVID-related conditions takes away much of the mystery. While patients will be amazed when they are diagnosed with a lifelong disorder, the right diagnosis can also be empowering and connect patients to a large, active community. It also removes uncertainty and helps them understand what to expect.
One thing that gives me and other ME/CFS sufferers 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 and understanding that there is not only so much human suffering to contend with, but also the opportunity to solve a thorny but intriguing biological and scientific problem. Their results in long COVID replicate previous results in ME/CFS.
Research on postviral diseases as a category is evolving faster. And we must hope that answers and treatments will soon follow.