By David Tuller, DrPH
As part of an ongoing project on long Covid, The Guardian recently published a powerful excerpt from a book called “What Doesn’t Kill Us Makes Us: Who We Become After Tragedy and Trauma.” The author, Mike Mariani, is an American journalist who a decade ago found himself smacked with a debilitating case of chronic fatigue syndrome, as the illness was generally called then. His experience led him to explore how other people have come through life-altering challenges—a traumatic brain injury, paraplegia, a prison sentence–and managed to refashion their lives, as he was forced to do.
Mariani’s book, published in August, also includes a moving account of his own serious health challenges. Ed Yong, The Atlantic’s Pulitzer Prize-winning science reporter, called it “a masterpiece—a book that truly captures what it means to be changed by tragedy, and a necessary salve for our troubled times.” From The Guardian’s excerpt, titled “A catalog of losses,” here’s a heartbreaking list of some of the pleasures that Mariani’s illness forced him to relinquish:
“I could no longer play football, basketball, baseball, or any other sports; run, bike, or exercise at the gym; fall asleep naturally; wake up feeling refreshed; go out for drinks; imbibe any alcohol without inducing devastating hangovers; use recreational drugs without triggering days of physical desolation; experience the heady cascade ushered by endorphins; feel the glorious surge of an adrenaline rush; feel “sharp this morning” or be “feeling good today”; manage on less than nine hours’ sleep; expend the energy required to teach literature and composition to yawning adolescents for multiple hours; consistently remember movie plots, grocery store lists, the week before last, or all manner of proper nouns; stay up late into the night without sabotaging my ability to function the following day; carry out math computations in my head; recall what it felt like to relate to the friends and family in my life; or participate in the world without the obfuscating screen of perpetual sickness.”
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CNBC published a piece last week headlined “Long Covid may be ‘the next public health disaster’ — with a $3.7 trillion economic impact rivaling the Great Recession.” The article noted that it was the first installment of a “special report examining long Covid’s destructive impact on individuals, families and the U.S. economy at large” and that the syndrome’s “tentacles…reach far beyond its medical impact: from the labor gap to disability benefits, life insurance, household debt, forfeit retirement savings and financial ruin.”
The article presented some dire statistics:
“All told, long Covid is a $3.7 trillion drag on the U.S. economy — about 17% of our nation’s pre-pandemic economic output, said David Cutler, an economist at Harvard University. The aggregate cost rivals that of the Great Recession, Cutler wrote in a July report.
Cutler revised the $3.7 trillion total upward by $1.1 trillion from an initial report in October 2020, due to the ‘greater prevalence of long Covid than we had guessed at the time.’ Even that revised estimate is conservative: It is based on the 80.5 million confirmed U.S. Covid cases at the time of the analysis, and doesn’t account for future caseloads.”
Whether these extremely large and alarming estimates turn out to be accurate, of course, remains to be seen. It will likely take years before the full economic impacts are known.
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Miles Griffis, a journalist suffering from long Covid, has taken a look at the landscape of clinics around the country offering services to those similarly afflicted. His article, published today by the magazine Popular Science, is headlined “What patients find at long COVID clinics: rejection, outdated therapies, and unanswered questions.”
For those seeking help, he reports, the situation can be bleak: “Even though high-demand clinics, sometimes called post-COVID care centers, now offer services for the illness, many fail the very patients they have set out to help. Long COVID patients share anecdotes about how the clinics they are admitted to often turn a blind eye to the gravity of their needs and fail to incorporate knowledge learned from myalgic encephalomyelitis, or ME, and other infection-associated illnesses.”
The story, which features interviews with, among others, Dr Lucinda Bateman, a well-known ME/CFS clinician in Utah, and Jaime* Seltzer, #MEAction’s director of scientific and medical outreach, includes a fair amount about ME and its links with long Covid. *[Correction: I originally misspelled Jaime’s name as “Jamie.”]
As Griffis writes:
“One of the least-acknowledged, but most-critical-to-address questions of long COVID is how it overlaps with ME. Before the COVID pandemic began, as many as 2.5 million Americans were already living with ME. Because the disorder has been stigmatized and underfunded for decades, few physicians are are able to diagnose and treat it. In fact, less than one-third of medical school curricula in the US include education about ME.”
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Disclosure: My position at UC Berkeley is funded largely by crowdfunded donations to the university from patients with ME/CFS, long Covid and other complex conditions.
