By Tamsin Zandstra
Ryan Prior is an author and journalist currently working at The Century Foundation, a progressive Think Tank based in Washington, DC and is also a journalist who has served as a science and health features writer at CNN throughout the COVID-19 pandemic. His book, The Long Haul: Solving the Puzzle of the Pandemic’s Long Haulers and How they are Changing Healthcare Forever, was published November 15, 2022.
LCI: What is your personal experience with Long COVID?
RP: I contracted Lyme disease as a teenager and since then have been suffering with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS). I was very aware when the pandemic began that I was vulnerable, even before the term Long COVID was coined. During Christmas of 2020 I was reporting for CNN on the pandemic and became ill with COVID-19 which led to several months of Long COVID.
What motivated you to write this book? Were you inspired by any other books or publications around similar topics?
I understood at the start of the pandemic that this was going to be a mass-disabling event. I wanted to tell this story and had already written my book proposal in the fall of 2020 and was getting ready to sign my book deal and then in conjunction became ill with COVID-19. I wanted to integrate this into the book, sharing my story of post-viral conditions, including ME/CFS. The book has a very story driven and human-centered approach. To tell any good story you need a nexus of expertise and experience which I have as a reporter and as an individual living with a post-viral condition which allowed me to tell the story effectively.
How did you find people with Long COVID to connect with? Were people generally open to sharing their stories?
For some of the earlier pieces I wrote whilst working at CNN I had connected with people experiencing Long COVID through the Body Politic support group. They were able to share a list of patients who were willing to talk about their experiences. I connected with certain people who were willing to be interviewed and share their experiences for the book; however, not all were open to speaking on panels and other events. People often get cold feet. In addition, it is important to remember and recognise that people are going through an uncertain time, experiencing a condition that is unfamiliar to them and are nervous that their employers, families, and friends may see their experiences and they may face judgment or discrimination. There are also a lot of people who are a bit in denial about their condition. Forms of psychological bias often creep in.
What is something that surprised you during the writing process?
There were of course things that surprised me about the publishing industry but with regards to Long COVID the level at which the medical establishment has been slow to respond to Long COVID has surprised me. Prior to the pandemic I had made a film about ME/CFS and the community in general anticipated an onslaught of post viral disease. The scientific evidence to prove the existence of ME/CFS is fully mature and so the fact that there is stigma around Long COVID has surprised me. Most people know someone who is experiencing Long COVID and their frustrations and therefore I would have anticipated a more aggressive response. Biden has released an executive order in response to Long COVID which is a good start but it is not sufficient to help people.
Based on what you learned from writing the book, what do you think can be done to better support Long COVID patients?
I am now working at a Think Tank called The Century Foundation, based in Washington, DC and am focused on developing disability policy. There is a lot that can be done to build on Biden’s executive order. In addition social security, Medicare, Medicaid, the NIH and the CDC all have a role to play in tackling Long COVID.
In addition, accelerating clinical trials and investigating the role of drugs such as Paxlovid which are crucial to tackling COVID-19 needs to be scaled up. Although this might not solve COVID-19 it could help many people with post-COVID conditions. Educating all medical professionals on basic protocol for viral conditions is also critical. If doctors understand the symptoms of ME/CFS, post treatment lyme disease and POTS syndrome they will be able to recognise Long COVID faster and treat people better before their conditions fully develop.
Was there anything new that you learned about LC or the LC community through this process?
A theme that I definitely want to draw out is that the Long COVID community is made up of regular people who are stepping up to solve a problem, when their voices have been unheard.
The Long COVID community is coming together to alert high policy makers about their struggle in order to make change. Congress has been doing town halls with members of society with Long COVID (one of whom I interviewed for my book who is now homeless as a result of Long COVID) which is a good way for members of the Long COVID community to have a voice. This is similar to what happened during the HIV epidemic where patients found their voice and were able to make a difference. This can be done with any current global issue including climate change and LGBTQ+ rights and I wanted this book to be accessible to a young audience to show them that if there is a problem they can raise their voice.
What has been the response to the book?
The response to the book has overall been positive. I ensured that I was in the know of the science when I was writing this book and wrote it through a person centered lens highlighting the human toll of the disease and the work of scientists to solve it. This is a serious topic which I have been sure to report in a serious way. I am now excited to be working in my new role at The Century Foundation working alongside Kim Knackstedt who was Biden’s previous disability advisor in the Whitehouse and is now a colleague of mine. I see this as an opportunity to change the medical system response and government response. It is important to highlight the human path and experience of Long COVID and not just look at post-viral conditions through a bureaucratic lens. When people seek medical treatment they often are passed to many different doctors across many different departments and are not able to get a singular diagnosis from one medical professional. A human designed approach will help to tackle this.
What more can the media do to support those with Long COVID, and raise awareness of the condition?
It is important to normalize the condition. The media has been reporting on Long COVID from early on. All major newspapers and media sources have been covering people’s experiences and the development of the scientific response to the virus. It may just be that we are in the early stages of understanding Long COVID and in 10 years we will see the dividend for our work.