RESILIENCE-
Covid Long Haulers Show Us How to Transform Healthcare.
The lived experience of disease is a power tool for developing effective care.
Reviewed by Hara Estroff Marano
KEY POINTS-
Covid long haulers built a thriving community in the midst of the pandemic.
Patient-led research could transform medical research across diseases.
Ordinary people facing a death-defying problem can leverage science and democracy to create a better society for all.
On a cold night in February 2021, I lay in the dark in my parents’ basement, worried that illness might be my permanent future.
It was months after Covid struck me and stayed with me. The disease felt like a phantom demon was clawing out my nervous system. Each night my 69-year-old mother gave me a massage. It felt like she was squeezing energy back into my dying muscles.
Just over a year earlier, I had written the story with the highest reader engagement of any story CNN published in 2019. And it came during a big year for the biggest online news outlet in the world. Buoyed by a string of chart-topping stories, I had plunged directly into covering the pandemic. It felt like the most exhilarating time in history to be a science writer.
Then, nine months in, the virus got to me. I still wasn’t better months after I had tested positive. Long Covid is often discussed as fatigue and brain fog. However, it’s better described as a total deadness of the body, in which one’s ability to create energy feels compromised, down to the cellular level. And I felt like it was impossible to form a coherent thought at all.
I was just 31 years old and used to commanding an audience of millions of readers. But I wondered whether I’d ever write again.
I was used to running four miles a day. Now, my 66-year-old father had to wait patiently by when I was out of breath walking five houses down the street.
My brain couldn’t handle the stimulation of looking at a computer screen. I sat still, cautiously scrawling words in a notebook, describing my days with just the slightest sliver of energy and focus, all that I could muster. They became a chapter of my book The Long Haul, the drive at the heart of the story, a story about the millions living with the long-term effects of Covid-19 and their potential for changing the healthcare system forever.
“People don’t buy what you’re selling,” best-selling author Simon Sinek says in a famous TED Talk. “They buy why you’re selling it.”
I am selling a hope for science and democracy at a time when these ideas are being tested to the breaking point. I am selling it because I believe these ideas have helped save my own life. And I believe a patient revolution—like the one that brought attention to long Covid in the first place— ought to transform all of healthcare.
Start with Why
Thirteen years before the pandemic, a junior in high school, I was a student council president in a small town in middle Georgia. I came down with a mysterious post-viral disease.
More than a dozen doctors couldn’t even find a diagnosis, let alone a treatment. After six months the answer became myalgic encephalomyelitis, or chronic fatigue syndrome, often called ME/CFS.
During sleepless nights I scoured online forums, which told me that the disease was under-researched, there were no treatments, and I could expect to be disabled for decades. Reading those words established the plot of my young life.
I lay in bed reading the memoirs of a young senator from Illinois, Barack Obama. He was mounting a long-shot presidential campaign, speaking of the “audacity” of hope. He was a hero to root for when irrational hope against cynicism was the only thing that felt real in my own life, too.
In those quiet moments in the dark, I constructed a new self. To write is to build one’s own soul on the page.
The greatest accomplishment in my life is that I’ve since fully recovered from ME/CFS, thanks in large part to an incredible family, a brilliant doctor, relentless patience, and dogged adherence to a robust treatment protocol.
But now, tens of millions around the world are falling sick in exactly the same way from long Covid. And most don’t have the benefits I’ve had, or a community of fellow patients to build them up.
I wrote about my recovery, first in 2012 in an op-ed for USA Today, and then later barnstorming the country after college to produce a feature-length documentary about ME/CFS called Forgotten Plague. I landed a job at CNN. Sitting alone at a computer station after work in a TV control room in 2015, I dialed into a video call. I joined the first-ever board meeting of a new nonprofit called the ME Action Network.
I was intoxicated by the vision of my fellow innovative patients around the country. We were propelled by a community desperate for answers. The organization we founded was designed to “ignite a global revolution in ME care.” We were powered by digital tools pioneered by alumni of the Obama campaign and sought to bring a 21st century organizing sensibility to disrupting the most severe and prevalent disease you’ve never heard of.
We painstakingly built the organization over the next four years. Then a global pandemic broke out. The science showed that more than 10% of those infected with the novel coronavirus could develop debilitating effects for months or years after. And no one was talking about it.
At ME Action, we knew this global health emergency was a greatest opportunity to reimagine and transform care for a dozen post-infectious diseases, including ME/CFS and Lyme. Our advocacy movement would help educate new Covid long haulers on how to manage their condition early on so that they might avert the disablities plaguing those in the ME/CFS community.
When long Covid hit me, I started reliving the nightmare I thought I’d escaped. As I regained function, the words poured out of me.
The Power of Community
Hundreds of studies show significant disruptions across a dozen organ systems in Covid long haulers. But because the disease is “new” and hasn’t been covered in medical schools, clinicians don’t have a set algorithm or protocol to follow when treating patients. Often the symptoms are bewilderingly complex. Most patient experience some degree of gaslighting, with doctors telling them that symptoms were “all in the head.”
Public health leaders originally declared that Covid would be deadly for a select few but pass by in a couple weeks for everyone else. When their expected recoveries didn’t materialize, tens of thousands of patients piled into the online Body Politic support group. Peer support from a community of sufferers was exponentially better than anything else on offer.
The “body politic” is a term long used by political philosophers referring to the mass of citizens that comprises a state. It’s a has resonance for a bottom-up movement of patients pushing for innovation and care—a fusion of science and democracy. Sitting at the nexus of lived experience and scientific expertise, the patient revolution they have started is a model for thinking about problem-solving across society.
Experience has shown me that expertise is greatest in the community living with the issue. After my documentary film was released, I joined the Stanford Medicine X community as an ePatient Scholar. Whether the conditions was narcolepsy, diabetes, or glioblastoma, patients voiced a common refrain: “I am alive today because of a patient community.”
With 1 in 4 people in the world living with some kind of disability, there’s tremendous untapped opportunity for building alliances around shared need and forging new forms of power forcing science forward because lives hang in the balance.
Those with the lived experience of a disease end up being the most effective problem-solvers. And there’s a movement galvanizing around that powerful idea.
Believing in Hope
One of my heroes is patient-physician-scientist David Fajgenbaum, the author of Chasing My Cure: A Doctor’s Race to Turn Hope into Action. As a medical student, he nearly died five times from Castleman disease, a rare autoimmune condition in which the body wages an all-out assault on itself. But he experimented on himself and found that a widely available drug could save his own life. Now he’s applying that same vision and drive to repurposing drugs for other diseases and may have unlocked a methodology to save millions. Faigenbaum's story of turning hope into action is a powerful reminder that hope is the most important tool of science, the spark that gets the impossible done.
RESILIENCE-
Covid Long Haulers Show Us How to Transform Healthcare.
The lived experience of disease is a power tool for developing effective care.
Reviewed by Hara Estroff Marano
KEY POINTS-
Covid long haulers built a thriving community in the midst of the pandemic.
Patient-led research could transform medical research across diseases.
Ordinary people facing a death-defying problem can leverage science and democracy to create a better society for all.
On a cold night in February 2021, I lay in the dark in my parents’ basement, worried that illness might be my permanent future.
It was months after Covid struck me and stayed with me. The disease felt like a phantom demon was clawing out my nervous system. Each night my 69-year-old mother gave me a massage. It felt like she was squeezing energy back into my dying muscles.
Just over a year earlier, I had written the story with the highest reader engagement of any story CNN published in 2019. And it came during a big year for the biggest online news outlet in the world. Buoyed by a string of chart-topping stories, I had plunged directly into covering the pandemic. It felt like the most exhilarating time in history to be a science writer.
Then, nine months in, the virus got to me. I still wasn’t better months after I had tested positive. Long Covid is often discussed as fatigue and brain fog. However, it’s better described as a total deadness of the body, in which one’s ability to create energy feels compromised, down to the cellular level. And I felt like it was impossible to form a coherent thought at all.
I was just 31 years old and used to commanding an audience of millions of readers. But I wondered whether I’d ever write again.
I was used to running four miles a day. Now, my 66-year-old father had to wait patiently by when I was out of breath walking five houses down the street.
My brain couldn’t handle the stimulation of looking at a computer screen. I sat still, cautiously scrawling words in a notebook, describing my days with just the slightest sliver of energy and focus, all that I could muster. They became a chapter of my book The Long Haul, the drive at the heart of the story, a story about the millions living with the long-term effects of Covid-19 and their potential for changing the healthcare system forever.
“People don’t buy what you’re selling,” best-selling author Simon Sinek says in a famous TED Talk. “They buy why you’re selling it.”
I am selling a hope for science and democracy at a time when these ideas are being tested to the breaking point. I am selling it because I believe these ideas have helped save my own life. And I believe a patient revolution—like the one that brought attention to long Covid in the first place— ought to transform all of healthcare.
Start with Why
Thirteen years before the pandemic, a junior in high school, I was a student council president in a small town in middle Georgia. I came down with a mysterious post-viral disease.
More than a dozen doctors couldn’t even find a diagnosis, let alone a treatment. After six months the answer became myalgic encephalomyelitis, or chronic fatigue syndrome, often called ME/CFS.
During sleepless nights I scoured online forums, which told me that the disease was under-researched, there were no treatments, and I could expect to be disabled for decades. Reading those words established the plot of my young life.
I lay in bed reading the memoirs of a young senator from Illinois, Barack Obama. He was mounting a long-shot presidential campaign, speaking of the “audacity” of hope. He was a hero to root for when irrational hope against cynicism was the only thing that felt real in my own life, too.
In those quiet moments in the dark, I constructed a new self. To write is to build one’s own soul on the page.
The greatest accomplishment in my life is that I’ve since fully recovered from ME/CFS, thanks in large part to an incredible family, a brilliant doctor, relentless patience, and dogged adherence to a robust treatment protocol.
But now, tens of millions around the world are falling sick in exactly the same way from long Covid. And most don’t have the benefits I’ve had, or a community of fellow patients to build them up.
I wrote about my recovery, first in 2012 in an op-ed for USA Today, and then later barnstorming the country after college to produce a feature-length documentary about ME/CFS called Forgotten Plague. I landed a job at CNN. Sitting alone at a computer station after work in a TV control room in 2015, I dialed into a video call. I joined the first-ever board meeting of a new nonprofit called the ME Action Network.
I was intoxicated by the vision of my fellow innovative patients around the country. We were propelled by a community desperate for answers. The organization we founded was designed to “ignite a global revolution in ME care.” We were powered by digital tools pioneered by alumni of the Obama campaign and sought to bring a 21st century organizing sensibility to disrupting the most severe and prevalent disease you’ve never heard of.
We painstakingly built the organization over the next four years. Then a global pandemic broke out. The science showed that more than 10% of those infected with the novel coronavirus could develop debilitating effects for months or years after. And no one was talking about it.
At ME Action, we knew this global health emergency was a greatest opportunity to reimagine and transform care for a dozen post-infectious diseases, including ME/CFS and Lyme. Our advocacy movement would help educate new Covid long haulers on how to manage their condition early on so that they might avert the disablities plaguing those in the ME/CFS community.
When long Covid hit me, I started reliving the nightmare I thought I’d escaped. As I regained function, the words poured out of me.
The Power of Community
Hundreds of studies show significant disruptions across a dozen organ systems in Covid long haulers. But because the disease is “new” and hasn’t been covered in medical schools, clinicians don’t have a set algorithm or protocol to follow when treating patients. Often the symptoms are bewilderingly complex. Most patient experience some degree of gaslighting, with doctors telling them that symptoms were “all in the head.”
Public health leaders originally declared that Covid would be deadly for a select few but pass by in a couple weeks for everyone else. When their expected recoveries didn’t materialize, tens of thousands of patients piled into the online Body Politic support group. Peer support from a community of sufferers was exponentially better than anything else on offer.
The “body politic” is a term long used by political philosophers referring to the mass of citizens that comprises a state. It’s a has resonance for a bottom-up movement of patients pushing for innovation and care—a fusion of science and democracy. Sitting at the nexus of lived experience and scientific expertise, the patient revolution they have started is a model for thinking about problem-solving across society.
Experience has shown me that expertise is greatest in the community living with the issue. After my documentary film was released, I joined the Stanford Medicine X community as an ePatient Scholar. Whether the conditions was narcolepsy, diabetes, or glioblastoma, patients voiced a common refrain: “I am alive today because of a patient community.”
With 1 in 4 people in the world living with some kind of disability, there’s tremendous untapped opportunity for building alliances around shared need and forging new forms of power forcing science forward because lives hang in the balance.
Those with the lived experience of a disease end up being the most effective problem-solvers. And there’s a movement galvanizing around that powerful idea.
Believing in Hope
One of my heroes is patient-physician-scientist David Fajgenbaum, the author of Chasing My Cure: A Doctor’s Race to Turn Hope into Action. As a medical student, he nearly died five times from Castleman disease, a rare autoimmune condition in which the body wages an all-out assault on itself. But he experimented on himself and found that a widely available drug could save his own life. Now he’s applying that same vision and drive to repurposing drugs for other diseases and may have unlocked a methodology to save millions. Faigenbaum's story of turning hope into action is a powerful reminder that hope is the most important tool of science, the spark that gets the impossible done.
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