By David Tuller, DrPH
So getting back to that long, ill-informed and poorly reported New York Magazine article on the purportedly psychogenic nature of both long Covid and ME/CFS…I responded in a twitter thread to the article’s misrepresentations of my criticisms about the PACE trial.
The journalist, a science writer named Jeff Wise, didn’t interview me. But he did interview three other critics of the CBT/GET paradigm—Columbia physician-scientist Mady Hornig; Lucinda Bateman, a physician who specializes in ME/CFS and related diseases; and Solve ME/CFS Initiative’s director of advocacy, Emily Taylor. All felt their words and positions were misrepresented and have voiced their objections in a public statement.
Here’s a key passage:
“As a group, we are surprised and troubled by the misrepresentation of information provided by Emily Taylor, Dr. Hornig, Dr. Bateman, and the absence of the existing science. We stand with the CDC, the NIH, the Mayo Clinic, Harvard and Stanford researchers, and scientists at institutions around the world who are studying virology, immunology, metabolomics, the autonomic nervous system, and the brain to help unravel these illnesses. We see Long Covid as a catalyst to help us understand decades of delayed progress in understanding post-viral and post-infection conditions such as ME/CFS and debilitating dysautonomias.”
Meanwhile, several excellent extended responses have been posted on Twitter.
David Putrino, a neuroscientist and physical therapist at Mt Sinai in New York, and Todd Davenport, a physical therapy professor at the University of the Pacific in Stockton, California, each took on the journalist’s failure to accurately portray the science, here and here. They also explained to Wise how important it is for clinicians and researchers to listen to patients’ accounts of their experiences. It wasn’t clear from his article that he grasped this point.
Davenport is a pioneer in the field of 2-day CPET testing for identifying the core ME/CFS and long Covid phenomenon known as post-exertional malaise (PEM) or post-exertional symptom exacerbation (PESE). He was unfailingly polite, and invited Wise to contact him directly if interested in further discussions. (As far as I know, such communication has not occurred.)
Meghan O’Rourke, whose haunting chronicle of illness, The Invisible Kingdom, is a finalist for the 2022 National Book Award, posted some pertinent thoughts as a writer and editor as well as patient. As she noted about the story, “These kinds of pieces tend to depict patients’ anger as evidence of their *irrationality,* rather than, say, logical frustration at bad medical science.” The wisdom of this observation would likely elude Wise himself.
New York Times columnist and social analyst *Zeynep Tufekci,* who recently wrote an excellent piece describing PEM, offered her own cogent perspective on what the New York Magazine article got wrong. Her comments drew expressions of consternation from Wise himself, and a spirited and lively exchange ensued. Wise was in over his depth and appeared to demonstrate little familiarity with the actual experiences of ME/CFS and long Covid patients. *Tufekci* got the better of the argument. [*In this paragraph, I originally misspelled Tufekci as Tufecki. I apologize for the error.]
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Professor Michael Sharpe: An Unreliable Narrator
Jeff Wise apparently considered Professor Michael Sharpe a credible source. Bad judgement. Professor Sharpe is an unreliable narrator. Given his role as a lead PACE investigator and defender, it is ill-advised to ground a story in his purported scientific acumen and accept at face value his grandiose accounts of victimhood.
In the section on PACE that misrepresented my work, Wise gave the trial investigators the last word with their blanket assertion that their results were “solid.” He himself offered not a hint of skepticism at this self-serving statement. He linked to five other papers to provide support for claims that CBT and GET are effective. None of these additional articles can be taken seriously. Among other deficiencies, they all involve unblinded studies relying for claims of success on subjective outcomes—just like PACE.
Wise adopted a position common among the CBT/GET proponents—that those opposing the psychogenic view of ME/CFS and long Covid are denigrating or dismissing mental illness as not “real.” That’s a straw-person argument, a deflection concocted out of ignorance or willful stupidity. Is there any evidence that ME/CFS patients are disproportionally out there denigrating mental illness as not “real” or dismissing the suffering of people with psychiatric problems? I certainly haven’t noticed that.
What I’ve noticed is that patients are saying, as they have for decades, that they don’t agree with the unproven assertions made by people like Professor Sharpe. They don’t agree that anxiety, depression and other psychiatric issues are causing their devastating physical symptoms. They think PACE is a piece of crap. It should be possible to disagree with Professor Sharpe without having to be accused of engaging in so-called “mind-body dualism” or be subjected to other forms of intellectual name-calling.
When unreliable actors like Professor Sharpe promote unproven hypotheses and conduct arguably fraudulent research, rejection of their views cannot reasonably be equated with the denigration of psychiatry or mental illness or the promotion of “mind-body dualism.” Perhaps those pursuing this line of reasoning really believe it. But in fact patients reject CBT and GET based on their experiences that these interventions are either not helpful or in fact harmful. They also reject them because they know the research base, exemplified by PACE, is crap.
Proponents of the psychogenic model often seem to feel a need to assure readers that they understand the genuine suffering of people with mental health issues. In his New York Magazine article, Wise was true to form when he wrote of the theory behind the CBT/GET treatment paradigm: “This is a crucial point: Even if this theory is correct and chronic fatigue is at least in part a psychological phenomenon, that is not to say that the illness is not real or “all in your head.” The suffering is real.”
I assume Wise intended this “crucial” comment to be read as an expression of sympathy and comfort for the tsunami of self-deluded patients who can’t accept that their symptoms arise from “a psychological phenomenon.” Instead, he comes across as arrogant, patronizing, tone-deaf and clueless. Just like his article.