In this Q&A with former CNN reporter and COVID long hauler Ryan Prior, he discusses his chronic fatigue syndrome diagnosis as a teenager, how patients can best advocate for themselves, the importance of patient-led medicine going forward and how Long COVID has catalyzed the disability movement and more. His new book, The Long Haul: Solving the Puzzle of the Pandemic's Long Haulers and How They Are Changing Healthcare Forever (Post Hill Press), delves into these topics in even greater detail.
Q _ As a teen, you suffered through a debilitating "invisible" illness that eluded diagnosis for months. What is the most validating thing a doctor can do for a patient in that situation?
A _Three simple words, "I believe you." As Sir William Osler, the 19th century father of modern medicine, would say, "Listen to the patient and he will tell you what the disease is."
Know what the patient's goals are. Why do they want to get better? To visit their grandchildren? To pursue grad school? To take surf lessons? The true end of medicine is to give patients back their sacred ability to dream.
How can patients help doctors?
Understand doctors are human: they want to help you, but they too are constrained by the realities of the health care system. View your physician as a co-equal in your care. Join an online patient support group, where fellow patients can give advice, emotional support and recommendations.
Embrace the future of digital health. Use a tracking app to log your daily symptoms. Tell your doctor the top three you'd like to fix first. Stay up-to-date with recent scientific advances. Volunteer for clinical trials. Participate in science.
Your eventual diagnosis was ME/CFS (myalgic encephalomyelitis, or chronic fatigue syndrome). You later suffered from Long COVID. How are they alike? Different?
For me, both experiences were nearly identical. I felt like a demon had hijacked my nervous system. I felt like my mitochondria, which create energy at the cellular level, had failed. The lifeforce animating me was fleeting, as though I was a mass of dead flesh rather than a living organism.
The difference with Long COVID was that my family and I had a decade of experience grappling with these symptoms. As scary as it was, it still felt within the norm of what we knew to expect.
How do you, with a chronic illness, propel yourself forward when things are especially difficult? What advice do you have for others in similar situations?
The most profound thing I've learned is to rest. Totally surrender. The only way for me to fight my illness was to stop fighting it. When I first fell sick, I lost my superficial definitions of self: student council president and cross country team captain. What I found—and can never lose—was my soul.
Know that suffering, in itself, is horrible. It's meaningless. But when you can attach a purpose to your pain, you can transmute it into wisdom and a new reason for being.
Is there hope for curing or alleviating the symptoms of Long COVID?
Absolutely. Hope is the most vital part of biomedical innovation. For patients: Don't give up hope that the next treatment you try can help you improve even 5 or 10 percent. You can reclaim your life, or at least part of it. But for policymakers: We need fast-tracked clinical trials for repurposed drugs now. We need an Operation Warp Speed for Long COVID.
Will the number of long haulers provide the impetus and data for researchers to focus on solving the riddle of post-viral illnesses? Will what they find for Long COVID translate to ME/CFS?
Harvard economist David Cutler projects that Long COVID could cause $3.7 trillion in economic damage due to lost wages, medical costs and disability. For comparison, that's about as much as the Great Recession. The numbers are clear: more urgent action is vital.
Long COVID research can translate to ME/CFS if researchers compare the diseases side-by-side and incorporate key understandings from the past 30 years of post-viral research.
A lot of autoimmune diseases have a virus trigger. What can we learn from this to improve future health outcomes?
Illnesses like fibromyalgia and Lyme can begin with an infection (viral, bacterial or otherwise) and produce similar disease states. The best researchers understand we can group these conditions as a whole class of infection-associated chronic diseases and systematically pick them apart. We should train specialists to treat them all in the same clinic. This could make it cost-effective for health care systems and transform countless lives with care that actually works.
Will patient-led medicine be the wave of the future? Why is it valuable?
People with the lived experience of a problem—who are closest to it—are a vital source of solutions. In Long COVID, patient researchers have pioneered the field, and traditional researchers have been catching up. This can happen for a range of diseases, especially complex or invisible illnesses. I believe this model works beyond just health care. In every field we should prize people-powered, bottom-up solutions.
How is Long COVID revolutionizing our understanding of disability?
COVID is a mass disabling event. It is catalyzing the next generation of the disability movement. This has happened in previous generations with polio and HIV. In the 1980s, AIDS activists shook up health care. COVID long haulers are doing the same thing, pointing out the limits of our disability system. In having empathy for sufferers, we challenge tired tropes about makers, fakers and takers.
Disability rights are human rights. No matter what disease we have, we have a God-given right to pursue life, liberty and happiness. I wrote this book because I believe in the dignity of the sick.
