From California magazine, 19 November 2015 (Words by David Tuller).
Years ago, I never thought to myself, ‘Hey, I’ve gotta be the guy who writes about chronic fatigue syndrome.’ I mean, why would I? It just sort of happened. When research suggested in 2010 that the illness might be linked to a mouse retrovirus, I wrote a piece about it for The New York Times.
After that I wrote another story, and then more stories, and then a few more—probably a dozen or so in all. But within a couple of years the mouse retrovirus hypothesis fell apart. And media interest in the illness vanished.
That was a problem for me. In the course of my reporting, I’d realized that the disease was both devastating and widely misunderstood. People were really, really sick—some were homebound for months and years at a stretch. Yet their condition had been saddled with one of the most condescending names ever given a major illness.
The word “fatigue” was a complete misnomer. One person after another explained that fatigue, as most people understand it, was not remotely comparable to the utter exhaustion they experienced. The real mark of the illness was that people experienced a sustained and disproportionate loss of energy, an extended relapse, even after a small amount of exertion. Other core symptoms were cognitive problems, sleep disorders, and often muscle pain.
In fact, the illness already had a name when the U.S. Centers for Disease Control and Prevention mis-christened it “chronic fatigue syndrome” in the late 1980s. That name was “myalgic encephalomyelitis” (right, sounds like a real disease!) The World Health Organization had recognized myalgic encephalomyelitis as a neurological disorder since 1969, and considered chronic fatigue syndrome a synonym. U.S. government agencies, in a compromise move, have recently started calling it ME/CFS.
I came to realize that as long as people called it chronic fatigue syndrome, no one would take it seriously. When I would mention the issue, others said they were tired too. When I talked to editors on the phone, I could practically hear their eye-rolling mechanisms click into gear as soon I uttered the word “chronic.”
But then I stumbled across an amazing story. In 2011, The Lancet, the U.K.’s leading medical journal, had published a study called the PACE trial.
The PACE investigators were well-known British mental health experts, luminaries in the medical and academic firmament. They had long contended that physical deconditioning cause the awful symptoms. And patients were deconditioned, according to the theory, because they remained sedentary. And they remained sedentary because they mistakenly believed they suffered from an underlying organic disease that would get worse with exertion.
That Lancet paper, and subsequent results published in other journals, purported to prove that two non-drug therapies—an incremental increase in activity called graded exercise therapy, and cognitive behavior therapy—could successfully treat the illness. The first was designed to counteract the deconditioning and get patients “reconditioned.” The goal of the second was to help patients let go of their conviction that they had a medical illness. The findings were hailed as good news for patients.
In reality, the study contained indefensible flaws. During the trial, the investigators relaxed the scores required for participants to be considered “recovered” on the two primary indicators—fatigue and physical function, assessed by questionnaires. In fact, they relaxed the scores so much that they overlapped with the scores required to demonstrate enough disability to enter the study. At baseline, 13 percent of the sample was already “recovered” on one of these two measures—an important detail that the investigators did not include in any of their papers.
During the trial, they also published a newsletter for participants that promoted the very therapies under investigation. They based their claims of treatment success solely on their subjective outcomes, since all their objective measures—like a six-minute walking test and data on employment and benefits—failed to show evidence of treatment benefits. In the trial protocol, they had promised to tell prospective participants about any conflicts of interest. But they didn’t. In their case, these conflicts included extensive ties with insurance companies seeking to limit health and disability claims.
I struggled with how to tell the story. Who were my hoped-for readers? Should I go short for a popular, mainstream audience, or long for scientists, the patient community, and obsessives like me? What was the best way to shovel in piles of statistics and complex epidemiological concepts? In the end, I followed my gut and just wrote what I wanted. I stopped somewhere just beyond 14,000 words—I mean, enough was enough. But, amazingly, I still hadn’t covered everything that had gone wrong in the PACE trial.
Who the hell was going to publish 14,000 words about chronic fatigue syndrome? I considered carving out a CliffsNotes version in a bid for wider dissemination, but couldn’t bring myself to do it. I finally turned to my friend Vincent Racaniello, a Columbia University microbiologist who hosts a site called Virology Blog. (What, you don’t have it bookmarked?) He’d become interested in ME/CFS during the mouse retrovirus era. Luckily, he trusted my reporting and posted my opus. Yay!
The piece took off in the Facebook-sphere and Twitter-sphere and maybe other spheres, especially among patients who had waited years for those outside their world to notice that the study was a meaningless mess. Suddenly, I found myself in the center of my very own viral tornado! Before this, I’d tweeted maybe a dozen times to 43 followers. Within weeks, I had 10 times as many hanging on my every PACE-related comment. Watch out, Kardashians.
After Virology Blog posted my piece, some other journalists and bloggers began covering the issue, citing my work. Patients quickly gathered more than 10,000 signatures on a petition to The Lancet demanding action. The experts I had quoted, concerned about the PACE study’s unacceptable flaws, signed an open letter to the journal and its editor, Richard Horton, seeking an independent review of the trial data. I’ve been posting weekly follow-ups on Virology Blog, and tweeting some more.
I have been able to track, day by day, my story’s journey through the eco-system and its immediate impact on the public debate—albeit within the fairly circumscribed world of people who care about this issue. Momentum still seems to be building, helped along by the federal government’s recent announcement of a new push for biomedical research to find answers to the illness.
Beyond exposing the flaws of this particular study, my project has offered me another enormous benefit. As a reporter, my work has always rested on the presumption that revealing, explaining and disseminating information can do more than create excess noise. In these hyper-mediated times, I haven’t always managed to believe that. This month, I definitely do.
David Tuller is academic coordinator of UC Berkeley’s joint masters program in public health and journalism.