September 15, 2022 – This should have been the start of new insight into a debilitating disease. In May 2017, I was patient #4 in a group of 20 participants in an extensive and intense study at the National Institutes of Health aimed at determining the root causes of myalgic encephalomyelitis/chronic fatigue syndrome, a disease that causes extreme exhaustion. , sleep problems and pain, among other symptoms.
What the researchers discovered by drawing our blood, harvesting our stem cells, performing tests to check our brain function, subjecting us to magnetic resonance imaging (MRI), strapping us to tilt tables, performing tests on our hearts and lungs, and more could have helped prepare doctors around the world for the avalanche of long COVID cases that accompany the pandemic.
Instead, we are all still waiting for answers.
In 2012, I was hit with 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, almost crippling fatigue, and brain dysfunction so severe that I had trouble remembering a four-digit PIN for 10 seconds. Electric shock-like sensations raced up and down my legs. At one point, while trying to work, letters on my computer screen began to swirl, a terrifying experience that I only learned years later was called oscillopsia. My heart rate accelerated when I stood, which made it difficult for me to stand.
I learned that I had post-infectious myalgic encephalomyelitis, also called chronic fatigue syndrome by the CDC (now commonly referred to as ME/CFS). The disease ended my career as a science and medical journalist and left me 95% bedridden for over 2 years. Reading about ME/CFS, I discovered the story of a disease that was not only overlooked, but also denied. It left me in despair.
In 2015, I wrote to then NIH Director Francis Collins, MD, and asked him to undo decades of inattention by the National Institutes of Health. To his credit, he did. He transferred 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 exploring the biology of the disorder.
But the coronavirus pandemic interrupted the study, and Nath gave his energy to autopsies and other investigations into COVID-19. Although dedicated and empathetic, the reality is that the NIH’s investment in ME/CFS is minimal. 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, myself and other patient advocates warned that a wave of disability would follow the novel coronavirus. The National Academy of Medicine estimates that between 800,000 and 2.5 million Americans suffered from ME/CFS before the pandemic. Today, as billions of people around the world have been infected with SARS-CoV-2, the virus that causes COVD-19, the ranks of people whose lives have been turned upside down by post-viral illness are are multiplied into millions.
In July 2020, National Institute of Allergy and Infectious Diseases Director Anthony Fauci, MD said that long COVID is “strikingly similar” to ME/CFS.
It was, and still 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 ME/CFS post-COVID-19: “I am mildly sick”; “I thought I was fine – then came overwhelming bouts of fatigue and muscle aches”; “my extremities tingle”; “My vision is blurry”; “I feel like I have an endless hangover”; “my brain stopped working”; “I can’t make decisions or perform daily tasks”; “I had to stop exercising after short sessions flattened me out.”
Additionally, many doctors have long denied the existence of COVID, just as many have denied the existence of ME/CFS.
And it’s true that some, if not many, people with brain fog and fatigue after a mild case of COVID will recover. This happens after many infections; this is called post-viral fatigue syndrome. But patients and a growing number of physicians now understand that many long-time COVID patients could and should be diagnosed with ME/CFS, which is lifelong and incurable. More and more evidence shows that their immune system is out of whack; their dysfunctional nervous systems. They fit all the published criteria for ME, which requires 6 months of non-stop symptoms, including post-exercise sickness (PEM), the name for getting sicker after doing something, almost anything. Exercise is not advised for people with PEM, and increasingly, research shows that many people with long-term COVID also cannot tolerate exercise.
Several studies show that about half of all long COVID patients qualify for a diagnosis of ME/CFS. Half of a large number is a large number.
A Brookings Institution researcher estimated in a report released in August that 2 million to 4 million Americans can no longer work due to the long duration of COVID. That’s up to 2% of the national workforce, a tsunami of disability. Many others have reduced hours. By unleashing a pandemic virus, we have created a sicker, less capable society. We need better data, but the numbers we have show that ME/CFS post-COVID-19 is a big and growing problem. Each infection and re-infection represents a roll of the dice that a person can become terribly ill and disabled for months, years, a lifetime. Vaccines reduce the risk of long COVID, but it’s unclear exactly how much they do.
We will never know if the NIH study I participated in might have helped prevent this pandemic within a pandemic. And until they publish, we won’t know if the NIH has identified any promising leads for treatments. Nath’s team is now using a very similar protocol to the ME/CFS study I participated in to investigate long COVID; they have already brought in seven patients.
There are no FDA-approved drugs for the main features of ME/CFS. And because ME/CFS is rarely taught to medical students, few frontline physicians understand that the best advice to give suspected patients is to stop, rest, and pace yourself. i.e. slow down when symptoms worsen, rest aggressively, and do less. that you feel you can.
And so millions of long-time COVID patients are stumbling, their lives shrinking, into a nightmare of being horribly ill with little help – a terrible theme that repeats itself over and over again.
Time and time again we hear that the long COVID is mysterious. But a lot of it isn’t. It is the continuation of a long history of illnesses triggered by viruses. Correctly identifying the conditions linked to long COVID removes much of the mystery. While patients will be surprised to be diagnosed with a lifelong disorder, proper diagnosis can also be empowering, connecting patients to a large, 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 a better research and better care. More and more researchers are finally listening, understanding that there is not only so much human suffering to face, but also the opportunity to solve a thorny but fascinating biological and scientific problem. Their findings in long COVID replicate earlier findings in ME/CFS.
Research into post-viral illnesses, as a category, is progressing more rapidly. And it is to be hoped that answers and treatments will soon follow.