Sept. 15, 2022 – It should have been the start of new insight into a debilitating illness. In May 2017, I was patient No. 4 in a group of 20 taking part in a deep and intense study at the National Institutes of Health aimed at getting to the root causes of myalgic encephalomyelitis/chronic fatigue syndrome, a disease that causes extreme exhaustion, sleep issues, and pain, among other symptoms.

What the researchers found as they took our blood, harvested our stem cells, ran tests to check our brain function, put us through magnetic resonance imaging (MRI), strapped us to tilt tables, ran tests on our heart and lungs, and more could have helped prepare doctors everywhere for the avalanche of long COVID cases that’s come alongside the pandemic.

Instead, we are all still waiting for answers.

In 2012, I was hit by a sudden fever and dizziness. The fever got better, but over the next 6 months, my health declined, and by December I was almost completely bedbound. The many symptoms were overwhelming: muscle weakness, almost paralyzing fatigue, and brain dysfunction so severe, I had trouble remembering a four-digit PIN for 10 seconds. Electric shock-like sensations ran up and down my legs. At one point, as I tried to work, letters on my computer monitor began swirling around, a terrifying experience that only years later I learned was called oscillopsia. My heart rate soared when I stood, making it difficult to remain upright.

I learned I had post-infectious myalgic encephalomyelitis, also given the unfortunate name chronic fatigue syndrome by the CDC (now commonly known as ME/CFS). The illness ended my career as a newspaper science and medical reporter and left me 95% bedbound for more than 2 years. As I read about ME/CFS, I discovered a history of an illness not only neglected, but also denied. It left me in despair.

In 2015, I wrote to then-NIH director Francis Collins, MD, and asked him to reverse decades of inattention from the National Institutes of Health. 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 head 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 of COVID-19. While he is devoted and empathetic, the reality is that the NIH’s investment in ME/CFS is tiny. Nath divides his time among 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 between 800,000 and 2.5 million Americans had ME/CFS before the pandemic. Now, with billions of people worldwide having been infected by SARS-CoV-2, the virus that causes COVD-19, the ranks of people whose lives have been upended by post-viral illness has swelled into nearly uncountable millions.

Back 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 is, a preventable tragedy.

Along with many other patient advocates, I’ve watched in despair as friend after friend, person after person on social media, describe the symptoms of ME/CFS after COVID-19: “I got mildly sick”; “I thought I was fine – then came overwhelming bouts of fatigue and muscle pain”; “my extremities tingle”; “my vision is blurry”; ”I feel like a have a never-ending hangover”; “my brain stopped working”; “I can’t make decisions or complete daily tasks”; “I had to stop exercising after short sessions flattened me.”

What’s more, many doctors deny long COVID exists, just as many have denied ME/CFS exists.

And it is 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 COVID patients could and should be diagnosed with ME/CFS, which is lifelong and incurable. Growing evidence shows their immune systems are haywire; their nervous systems dysfunctional. They fit all of the published criteria for ME, which require 6 months of nonstop symptoms, most notably post-exertional malaise (PEM), the name for getting sicker after doing something, almost anything. Exercise is not advised for people with PEM, and increasingly, research shows many people who have long COVID also cannot tolerate exercise.

Several studies show that around half of all long COVID patients qualify 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 million to 4 million Americans can no longer work due to long COVID. That’s up to 2% of the nation’s workforce, a tsunami of disability. Many others work reduced hours. By letting a pandemic virus run free, we’ve created a sicker, less able society. We need better data, but the numbers that we have show that ME/CFS after COVID-19 is a large, and growing, problem. Each infection and re-infection represent a dice roll that a person may become terribly sick and disabled for months, years, a lifetime. Vaccines reduce the risk of long COVID, but it’s not entirely clear how well they do so.

We’ll never know if the NIH study I took part in could have helped prevent this pandemic-within-a-pandemic. And until they publish, we won’t know if the NIH has identified promising leads for treatments. Nath’s team is now using a protocol very similar to the ME/CFS study I took part in to investigate long COVID; they’ve already brought in seven patients.

There are no FDA-approved medicines for the core features of ME/CFS. And because ME/CFS is rarely taught to medical students, few frontline doctors understand that the best advice to give suspected patients is to stop, rest, and pace – meaning to slow down when symptoms get worse, to aggressively rest, and to do less than you feel you can.

And so, millions of long COVID patients stumble along, lives diminished, in a nightmare of being horribly sick with little help – a dire theme repeating itself over and over.

Over and over, we hear that long COVID is mysterious. But much of it isn’t. It’s a continuation of a long history of virally triggered illnesses. Properly identifying conditions related to long COVID removes a lot of the mystery. While patients will be taken aback 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’s given me and other ME/CFS patients hope is watching how long COVID patients have organized and become vocal advocates for better research and care. More and more researchers are finally listening, understanding that not only is there so much human suffering to tackle, but the opportunity to unravel a thorny but fascinating biological and scientific problem. Their findings in long COVID are replicating earlier findings in ME/CFS.

Research on post-viral illness, as a category, is moving faster. And we must hope answers and treatments will soon follow.