Ryan Prior’s ‘The Long Haul’ documents long COVID advocates

On the shelf

“The Long Road: Solving the Riddle of the Pandemic’s Long-Distance Drivers and How They Will Change Healthcare Forever”

By Ryan Prior
Post Hill: 336 pages, $28

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On September 18, 2022, the day after President Biden died on “60 Minutes,” the #MEAction Network protested at the White House to urge Biden to declare a national emergency for people living with post-infectious diseases. In attendance was Ryan Prior. Prior, a journalist at CNN, has an illness strikingly similar to long COVID, myalgic encephalomyelitis, euphemistically known in the US as chronic fatigue syndrome. He is now the author of The Long Haul: Solving the Puzzle of the Pandemic’s Long Haulers and How They Are Changing Healthcare Forever.

“Long hauler,” if you’re unfamiliar with the term, refers to someone who hasn’t recovered from COVID infection or who has been suffering from COVID for a long time – a multisystem syndrome with a myriad of symptoms ranging from severe fatigue to cognitive impairment pass. Both “Long Hauler” and “Long COVID” were terms coined by patients – themselves a unique phenomenon; Diseases are usually named by the doctors who discover them. Although long COVID is caused by a novel virus, once infected, the disease is not new. Think of post-polio syndrome and AIDS.

In Prior’s framing, long COVID is a shadow pandemic of those we have characterized only by hospitalizations and deaths. As COVID-19 spread around the world, Prior writes, devastating data emerged: “Hundreds of studies showed that multisystem illnesses can last for weeks, months, or longer in an estimated 10 to 30 percent of those infected” — a massive disability crisis. (Since he finished his book, a recent CDC study found that nearly one in five American adults infected with COVID-19 developed a long COVID.)

In this shadow pandemic, previously healthy and active people are becoming shells of their former selves. Alarmingly, more and more patients are also meeting criteria for myalgic encephalomyelitis (ME), which in its severe form has been likened to “late-stage AIDS, multiple sclerosis, and kidney failure.”

Distilling nearly three years of pandemic research and interviews into a careful mosaic of patient narratives, Prior tells the story of long-COVID alongside his own journey with ME. He also chronicles how activist patients fought the battle for recognition and research in hopes of finding a treatment and eventually a cure. From their beds, long-distance riders found each other via social media, got organized, and started doing the impossible. Support groups created a space to be seen to share symptoms and stories, which turned into “vital information about the long-term effects of Covid-19”. They met not just to comfort but to mobilize, and they collected data as “ordinary citizen scientists rather than the political and medical establishment.”

The cover of "the long haul," imagine a person wearing a mask.

As their numbers grew, one of those groups, LongCovidSOS, organized a meeting to present their findings to the World Health Organization — whose director-general noted, “It appears that patients are writing the first textbook on long COVID.” Soon the CDC began reaching out to long-distance drivers for symptom advice, and to compile and publish one-page briefings that even included for the first time the hallmark symptom of ME and now long-COVID: post-exercise malaise. That collaboration resulted in the CDC’s long-COVID guidelines — a sign the facility had confirmed the existence of the disease.

Although the journey of patient-led activism runs through the narrative of Prior’s book, it is most compelling when it shifts attention from the data to the personal element of living with a chronic illness. As with any social issue, differences in race, ability, gender, and sex can further marginalize the marginalized—in this case, the chronically ill. Prior addresses these differences head-on, giving a voice to the disenfranchised in his own words and hers.

The medical establishment has a sordid history of distrust and mistreatment of people of color, especially black people. Cynthia Adinig, a black woman who has long had COVID and struggled with many of its comorbidities, joined a long-running COVID support group on Facebook, looking for a way to treat her illness because her doctors didn’t have the answers.

“When the medical system throws us away like garbage and abuses us, it feels like rape,” Adinig tells Prior. “And as a rape victim, I know how that feels. … When you have someone with power stealing your trust and then you are powerless to do anything, that to me is rape.”

At such moments, The Long Haul is not easy reading, but Prior digests the patient experience beautifully with precise and compassionate understanding. “If our experiences aren’t reflected in the world, we have a hard time making any sense of them at all,” he writes. “This is the case with a chronic unknown disease. It is a no man’s land in both medicine and popular culture where individuals are left to create their own coping mechanisms, emotional and physical support structures, and pathways to recovery.”

In his final, most personal chapter, Prior delves into what separates real hope from false hope: a willingness to accept the harsh reality of chronic disease and all its losses, and to redefine oneself within its limitations. Holding on to hope that things can change because change is the only constant in life. This is not a Pollyannaian cover-up for the catastrophe, but a sincere reckoning with the self and its vastness.

“And perhaps the truest hope I know of,” concludes Prior, “is trusting in the resilience of ordinary people with lived experience with a problem to gather … to help write or reform policy and ceaselessly seek a common one.” Effort to try to change the world. And whether we actually change it or not, I believe in that collective striving, in the sparks that fly out of the friction when you hit a rocky opponent.”

In these sparks, the book conveys its most profound message: in the marriage of patient activism and science, there is hope for healing.

Ochoa is a cultural critic and author of Stella! mother of modern acting.”

https://www.latimes.com/entertainment-arts/books/story/2022-11-16/how-patients-wrote-the-first-textbook-on-long-covid Ryan Prior’s ‘The Long Haul’ documents long COVID advocates

Sarah Ridley

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