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.”
