Trial By Error: The Truth According to Wired (and Alan Levinovitz)

By David Tuller, DrPH

Much has already been written about Alan Levinovitz’ 7,600-word love poem to the potential healing powers of so-called “mind-body” interventions for Long Covid. Wired published the article last Monday under the title “The Painful Truth About Long Covid.” As the word “painful” suggests, the epic is also infused with darker notes. These involve an unhinged online commando of very scary sick people creating “a climate of fear” and seeking to destroy science by terrorizing mind-body practitioners and those who report positive experiences with these programs.

Hm. Have the movie rights been sold yet? 

Actually, it turns out that the article is part of Levinovitz’ forthcoming book, which is called “Demons by Another Name: Biology, Belief and the Stories That Make Us Sick.” Gee, I wonder what it’s about??? Perhaps its premise might help explain why this article reads as if Levinovitz is straining mightily to interpret patients’ experiences in ways that conform to a preferred narrative while disregarding well-documented examples of research misconduct.

Levinovitz is a professor of religion at James Madison University, a well-regarded public educational institution in Harrisonburg, Virginia. According to his JMU page, his research “focuses primarily on the relationship between religion, literature, and science.” In 2021, he wrote an excellent article on Long Covid for VICE. I was quoted in that article, and I was quoted in this one—both times accurately, which is no small thing! I’ve made comments online about the new Wired piece, not all of them negative, but this is my first post about it, and likely not the last.

(In fact, while I was quoted accurately, Wired got my job title wrong, referring to me as a “lecturer” at Berkeley, which I haven’t been for years, and not “senior fellow,” which I am. While I appreciated that Wired fixed the error, I was surprised at the absence of any indication that a correction had been made.)

“Mind-body” or “brain retraining” interventions generally include a goulash of non-medical components, which can include meditation, cognitive behavior therapy, body awareness exercises, positive affirmations, relaxation techniques, Buddhist and other Eastern philosophies, and so on. Popular examples of these programs include the Gupta Program, the Dynamic Neural Retraining System, Internal Family Systems, and—in the UK and Scandinavia—the Lightning Process. The individual elements of these programs tend to be more or less benign, and some people report subsequently experiencing dramatic upswings in their health.

A major problem, however, is that the programs’ websites and promotional materials generally make grandiose promises, presenting them as a sure-fire cure-all for an amazingly wide range of complex conditions. The Gupta Program, for example, is “designed to reverse chronic inflammatory conditions, anxiety, burnout and restore the life you deserve.” Here is the list of conditions, or categories of conditions, it claims to treat: ME/CFS, Long Covid, Lyme Disease, Irritable Bowel Syndrome, Certain Autoimmune Conditions, Mold Illness, Mast Cell Activation Syndrome, Multiple Chemical Sensitivities, Chronic Inflammatory Response Syndrome, Small Intestinal Bacterial Overgrowth, Drug Withdrawal, Electrical Hyper Sensitivity, Fibromyalgia, Dysautonomia, Anxiety/Panic, Burnout, Pain Syndromes/Migraines, Postural Orthostatic Tachycardia Syndrome.

Is that all?

These expansive claims are evidence-free; no one should believe them or take them at face value. But many patients do believe them and are crushed when they don’t get better—or when they get even worse. At the same time, compelling and seductive anecdotal accounts of improvement and recovery are posted by the dozens or hundreds on such sites.

In the roiling online debate over “The Painful Truth about Long Covid,” I challenged some of Levinovitz’ assertions. I also defended him robustly over two particular issues. First, whether it was appropriate to invoke his child in advancing arguments against the article. Second, whether a particular phrase—“there is no ‘Long Covid’—should be interpreted to mean he is denying the existence of Long Covid or simply arguing that Long Covid is not a single clinical entity. Quite a few patients who generally support my work strongly rejected my position on both matters. 

(After engaging over these questions, I saw a Levinovitz comment on X, posted more than a year ago, about his belief that “60-80% of Long Covid is explicable” as “psychogenic symptoms/illness.” The post re-surfaced last week during the brouhaha over the Wired piece. As far as I know, there are no reliable data to support this statement. The post doesn’t indicate the source of the estimate, and the statistic is not repeated in the story itself, so I don’t know if Levinovitz still believes it. In any event, it is my belief that his belief was and is nonsense.) 

Levinovitz is a graceful writer and the piece is definitely absorbing to read. He quotes several opponents of mind-body interventions and the so-called “biopsychosocial” school. He also makes some important points, such as highlighting the way that so many patients with these conditions have been poorly served and indeed harmed by the medical system for many years. But that doesn’t mean he draws the right conclusions from his investigations, and both he and Wired make some questionable journalism choices.

With that said, here are some overall thoughts. (I meant this post to be relatively brief, but it grew to 3000+ words. I know that, given cognitive limitations, many will not be able to make it through the whole thing. I’m sorry!!)

**********

The Truth according to Levinovitz and Wired

*Let’s start with the headline, which declares that Levinovitz is presenting “The Truth” about a medical condition no one has yet cracked. That’s a revealing choice of words. Biblical literalists, fanatics in other religious traditions, and Trumpistas all lay claim to The Truth. It behooves others, even professors of religion, to refrain from such declarations. In this case, the implication is that the article’s content is irrefutable. That stacks the deck against anyone seeking to challenge it. 

Per tradition and practice /in US journalism, editors have generally been the ones to set headlines and sub-titles. But this is a 7,000-word epic in a high-profile publication. It is possible, but seems unlikely, that Levinovitz had absolutely no opportunity, either before or after publication, to protest a headline that implied he was presenting us with the Ten Commandments. Some readers might be eager to read about The Truth. But the words suggest an inappropriate level of certitude, on Wired’s part if not Levinovitz’, that casts a shadow over everything that comes after.

**********

Everything old is new again

*Then there is the sub-title: “There might finally be a way forward for long Covid treatment—if only you were allowed to talk about it.” “Finally?” I guess Levinovitz hasn’t noticed that “talk” about this stuff is all over the place and has been going on for years, even decades. Pooh-bahs promoting the biopsychosocial approach exercised hegemony over the discussion of treatments for myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) for 30+ years. Citing vile social media posts and private communications, they have long portrayed the community of desperation patients as an irrational and dangerous mob of anti-science zealots–a notion revived by Levinovitz.

In fact, the current discussion over Long Covid and mind-body approaches is an extension and amplification of these long-standing tensions. In the UK and Europe, Long Covid patients routinely report that their government or private doctors and clinicians, at a loss for how to help, have recommended that they pursue mind-body strategies. The notion that no one is talking about it is pretty ridiculous—a non-starter. But it allows Wired and Levinovitz to present themselves as prophets leading patients out of the biomedical wilderness.

Like the headline, the sub-title language is prejudicial. Whatever role Levinovitz did or did not have in concocting the phrase, he is nonetheless stuck with it–just like he is stuck with the headline. 

In a lengthy discussion on the Science for ME forum, Levinovitz confirmed that the article itself doesn’t argue that mind-body approaches are “not talked about,” and declared that “the headline and subtitle are outside my control, which sucks.” In other words, he is saying that Wired’s editorial team settled on language that contradicts the context of the article. At the same time, he has posted enthusiastically about the rigor and scrupulousness of Wired’s editorial processes. Given Levinovitz’ complaint that their word choices distorted his message, it is reasonable to question Wired’s editorial rigor and scrupulousness.

In my experience of writing long pieces for major news organizations, editors have always been willing to adjust or correct a headline or sub-title if I offered a cogent explanation of why one or the other was unacceptable or misleading, for whatever reason. If Wired is unwilling to extend the same basic courtesy to Levinovitz, perhaps he should  reconsider whether he wants his work to appear in a magazine that undermines his work in the first words readers will see.

**********

Omitting the voices of “mind-body” intervention failures

*Unlike some critics, I have no issue with presenting the stories of people who reported that they have improved or recovered after pursuing mind-body treatments. To his credit, Levinovitz acknowledges that such anecdotes are not evidence of anything except that individual’s experience. But the piece suffers from his decision to offer no testimony from even one among the masses of patients who have tried these sorts of interventions and report that they did not improve, or appeared to improve for a period of time before suffering a serious relapse, or got worse during or immediately after their participation in one of these programs. 

A few years ago, I wrote a scathing piece about the Lightning Process, which was created by one-time faith healer Phil Parker, who is now an osteopath and psychologist. A short bio on a site devoted to a spiritual healing course Parker once co-taught noted that he “developed this ability to step into other people’s bodies over the years to assist them in their healing with amazing results.” Ok, then!

In my story, I centered the accounts of patients who reported enormous setbacks after their Lightning Process sessions. However, I also included two accounts from people who reported remarkable improvements. I didn’t mock them, dismiss them, or accuse them of having made the whole thing up. I did indicate that science couldn’t account for what happened, given current levels of knowledge. The presence of those testimonies strengthened the credibility of the overall article. 

On social media, Levinovitz has made the point that the Wired piece was about those who reported improvements, not about those who didn’t, and he noted that he had mentioned the existence of these cases. Indeed, the article reported that “many patients have posted harrowing personal testimonials about losing their money to these programs and being made to feel like they were to blame for their symptoms,” with a link to a set of what could be called Lightning Process anti-testimonials. Good for him. But, in my view, that is insufficient. In a 7,600-word piece, the absence of even one concrete account from one specific individual amplifies the bias implicit in the headline and sub-title.

**********

Case definitions you could fly a plane through

*Levinovitz is 100% right that major case definitions of Long Covid are extremely porous; in some cases, you could fly a plane through them. That makes research challenging and, if not well-designed, uninterpretable and meaningless—not to mention a waste of limited research funds. But that doesn’t mean little useful has been learned about pathophysiological processes, as Levinovitz seems to think. Smart researchers have understand for years that sub-grouping Long Covid study populations by phenotype will be critical to success.

**********

Blaming patients for a social media problem

*As Levinovitz notes and as should be self-evident to every sentient being, mind-body practitioners should not be abused, harassed, or threatened, and patients who attribute improvement or recovery to mind-body programs should not be dismissed as lying or having faked their illness. But every controversial debate online is toxic, and this one is no different. It is important here to remember Godwin’s Law of Nazi Analogies: “As an online discussion grows longer, the probability of a comparison involving Nazis or Hitler approaches one.” In other words, online discussions always end up in the sewer.

Mike Godwin, a lawyer specializing in internet-related issues, unveiled his eponymous “law” in the 1990s. Given the explosion of social media, the deployment of algorithms designed to ramp up engagement and emotions, the trumpification of public discourse, and the Musk takeover of Twitter, the proliferation of horrible online behavior has accelerated in recent years. Onslaughts of abuse and harassment are an internet phenomenon, not one particular to Long Covid patients or the Long Covid community. 

Randos who spew out demented or threatening posts represent only themselves. They do not represent groups of patients. Levinovitz seems to believe otherwise—or at least that is how it comes across in Wired.

**********

Intellectual myopia and unhinged mobs

*Levinovitz is right that biomedical research into Long Covid has been fraught with problems, for any number of reasons. But he refuses to cast the same critical eye on the self-evident methodological flaws in the biopsychosocial literature. Instead, he takes a “they said, they said” approach—as if he can’t decide whether it is kosher for trial participants to be “recovered” on key variables at baseline, as they were in PACE. (Hint: It isn’t.)

Levinovitz seems too smart not to recognize that PACE and related studies are crap, so I am mystified by these striking examples of intellectual myopia. But that myopia helps explains why he insists that patients reject biopsychosocial interventions because they need their illness to be explicitly biological in order to feel like it being taken seriously and not treated as “all in the mind.” In other words, per Levinovitz, patients feel a deep emotional need to protect a narrative of pathophysiological dysfunction rather than accepting any implication that their illness has anything to do with psychological and mental health issues.

That might be the case for some. But a great many patients reject the biopsychosocial approach because they have tried cognitive behavior therapy and rehabilitation and exercise programs and experience them as useless at best, or harmful. They also recognize that PACE stinks—it’s a piece of crap, like I’ve always held—and that many related studies of ME/CFS and Long Covid suffer from similarly egregious flaws. Levinovitz rejects these assessments; at least, the Wired story includes no discussion of the methodological missteps of PACE and other studies. 

Since Levinovitz fails to grasp the real reason why so many patients reject these therapies in the first place, he replaces their narrative with his own interpretation of their motivations. To him, patients’ understandable rage looks like the hysterical rantings of an online army. One of the many responses to the Wired article, an essay by Fred Rossi, an Australian psychotherapist and CBT specialist who is now a patient, makes this point succinctly:

“So the community is not a mob protecting a story. It is a population that watched a treatment paradigm hurt its own members and now flinches when the same machinery rolls out under a new name. That flinch is learned, and it was learned the hard way.”

**********

The all-purpose construct of “neuroplasticity”

*Having framed the biomedical approach as unlikely to produce solutions for many or most patients, Levinovitz pivots to mind-body programs that promote the trendy construct of “neuroplasticity.” I don’t know that anybody seriously rejects the importance of neuroplasticity as a phenomenon. But simply invoking neuroplasticity as an explanatory model should not give body-mind proponents a free pass to declare that whatever mish-mash of modalities they have cooked up can cure pretty much any condition that they think should be attributed to a frazzled nervous system.

Levinovitz never claims that mind-body approaches have been proven to work. But beyond quoting a couple of counter-opinions, he doesn’t delve into the theory behind them—that these illnesses arise “when the brain gets stuck in a feedback loop of fight or flight,” leading to “nervous system dysfunction.” Becca Kennedy, a physician in Portland, Oregon, who left Kaiser Permanente to set up a private practice specializing in mind-body approaches, told Levinovitz that “now we have the neuroscience to understand these symptoms.” 

What new neuroscience is that? How does it prove that a “feedback loop” of some kind is generating symptoms? I don’t know. Levinovitz does not provide any information about that. While decrying the fact that patients are seeking out unproven medications and risky surgeries in an effort to gain relief, he seems to have no concerns about patients pursuing unproven non-medical interventions.

**********

What’s the name of that thing again?

*Levinovitz describes how diagnoses falling under the umbrella of “post-acute infection syndromes” can be “a terminological minefield,” adding that the “the most common designation, and the one used by the Centers for Disease Control and Prevention, is ME/CFS, which stands for ‘myalgic encephalitis/chronic fatigue syndrome.’” 

In fact, a cursory check of the CDC website reveals an elementary error. The agency does not use the word “encephalitis” but “encephalomyelitis,” which means something slightly different. Apparently the rigorous and scrupulous fact-checking department at Wired failed to catch this mistaken reference to the name of the illness that, along with Long Covid, is at the core of the piece. (The error has been corrected. Like the change in my job title, the correction is not indicated. Hm.)

It is easy to make minor mistakes like this, however embarassing to the journalist involved. No one should interpret them to mean anything other than that someone slipped up. I’m certainly very capable of these sort of lapses. Years ago, a New York Times story I wrote required corrections in three separate places. (My editor warned me to make sure the corrections were accurate in order to avoid having to then correct the corrections.) But the whole point of having a fact-checking department is to catch these things before they appear in the published version.

**********

Levinovitz disappears key mind-body clinical trials

*Levinovitz calls for robust research into mind-body interventions. But he fails to mention two major clinical trials that pertain directly to his argument—a perplexing omission. 

In 2017, Archives of Disease in Childhood, a Lancet journal, published a major British trial of the Lighting Process. The investigators failed to mention that they recruited 56% of their participants before registering the trial. Moreover, the investigators swapped their designated primary and secondary outcomes at that time, while falsely reporting the trial as 100% prospective. Thanks to me (and to a secret source who contacted me about the trial’s breathtaking methodological lapses), the Archives paper now carries a 3,000-word correction. It was also slapped with a 1,000-word editor’s note explaining in tortured language why it wasn’t retracted. 

This is all fully documented and easy to find. Levinovitz doesn’t entertain the self-evident possibility that many patients might reject mind-body interventions, as they do more standard biopsychosocial therapies, because they have become aware of such fraudulent research practices. Providing information about the 2017 paper might have forced Levinovitz to acknowledge that there is some rationale for people to distrust those investigating and promoting these programs.

One could argue that the Lightning Process trial was published almost a decade ago, and therefore less relevant to the current context. But Levinovitz also ignores an ongoing Finnish study of the Gupta Program. (The study was presented as focusing on “amygdala retraining,” whatever that means.) That trial recently released preliminary results showing no benefits for the program. Maybe Wired would have highlighted the study if the results had been better.

So what happened here? Levinovitz has said he worked on the article for a year and declaimed about his vast knowledge of the literature. Does that mean he knew about these trials and thought they weren’t worth mentioning? If he didn’t know about then, why didn’t Wired’s fact-checking department unearth them? 

Journalists have an obligation to include information that appears to raise questions about their assertions and conclusions. They can then rebut that information if they choose. Levinovitz could have argued, for example, that the disastrous Lightning Process study was actually not so bad because of x, y and z. Regarding the Finnish study on “amygdala retraining,” he could have argued that it was necessary to wait for the final results in order to make a fair and full assessment. 

But Levinovitz did none of those things. Instead, the Wired article disappeared these two key research projects. When it comes to reporting on mind-body clinical trials, Levinovitz and Wired failed this particular test of journalistic responsibility and integrity.

**********

I could go on. And I likely will! In the near future, I hope to post more blogs that explore one or more of these issues, or others related to the Wired article. Stay tuned.

**********

An important programming note

I have never hidden the fact that I crowdfund to support my position at Berkeley, and that most of the donations—which go directly to the university, not to me—come from patients. That is clearly a reportable conflict of interest. I have routinely been criticized for it and accused of being a shill—not least in this 2019 PACE propaganda piece from Reuters. (In that instance, as with the Wired article, I immediately alerted the publication that my academic position was not properly described.)

I assume this vein of criticism, as well as other accusations, are likely to resurface in the course of this debate, along with the Reuters article. My response has always been this: Tell me what facts I got wrong, and I’ll correct them.