By David Tuller, DrPH
In a post earlier this week, I noted some differences in the tenor of the debate over Long Covid in the US and UK. Yesterday, another excellent and in-depth piece on the issues appeared on the domestic front, this time in VICE. The author, Alan Levinovitz, is associate professor of religious studies at James Madison University in Virginia. (School motto, according to Wikipedia: “Knowledge is Liberty.”) Besides religion, Levinovitz writes on a lot of other interesting topics, like science and belief systems and how they intersect. Last year, he published Natural: How Faith in Nature’s Goodness Leads to Harmful Fads, Unjust Laws and Flawed Science. (It’s a good book.)
When the VICE article–“The Medical System Should Have Been Prepared for Long COVID”–popped up on my screen, it had slipped my mind that Levinovitz had contacted me some months ago. I still don’t recall our conversation in great detail, except that he seemed smart and engaged and appeared to be taking ME/CFS and the possible links to Long Covid seriously.
Well, I’m really glad I talked with him. He’s done his research. January’s New York Times Magazine article and other recent pieces explored some of the complicated overlaps between ME/CFS and Long Covid. Now Levinovitz has taken the matter a step further, asking why we don’t know more about post-viral illness in general. His answer, in part, is the long-standing neglect of ME/CFS. This is not news to those involved in the issue. But it is gratifying that a sharp outside observer has weighed the available information and come to the same conclusion.
I sent Levinovitz a message yesterday asking him what drew his interest in covering the issue. Here’s what he wrote:
I was drawn to the topic because I’ve been interested in the intersection of medicine and belief for a long time, especially psychogenic illness, mass hysteria, placebo and nocebo effects. When I saw what was happening with long Covid it immediately connected to these interests, and I saw a reflexive tendency to classify it as psychogenic.
So then I became curious: Is it psychogenic? And if it were, how would we know? That second question, it turned out, was very hard to answer, in part because the medical community doesn’t have a good way of answering it. Vice was willing to give me the space I needed to unpack these really complicated issues in a way that did them justice.
When I read thoughtful stories like the one in VICE, I don’t expect to agree with everything. I can usually find a point I might have expressed differently or a quote that doesn’t resonate with me, or maybe I would have interviewed those folks instead of these ones. But that’s ok. I’m inside the issue so of course I have strong ideas about how it could be covered. From my perspective, the fact that people not immersed in the field are now curious and are taking the time to poke around and ask questions and write probing articles is itself a sign of enormous change since I began my quixotic project a few years ago.
For his piece, Levinovitz talked to both Jen Brea and Julie Rehmeyer, among others, about the experience of having a poorly understood illness. (Julie, did you refer him to me? I can’t remember now. If so, thanks!) He rightly credits Hillary Johnson’s Osler’s Web, a prodigious feat of reporting, as the €œdefinitive€ work about developments in the 1980s and 1990s. He mentions Johnson’s account of Anthony Fauci’s past unwillingness to take ME/CFS seriously, a surprise to many who have only been aware of Fauci as a sane voice amidst the Trump insanity.
What’s more, Levinovitz highlights the PACE trial, the significance of which is often overlooked in US coverage of ME/CFS. I have been trying to discredit PACE since Virology Blog posted my initial investigation more than five years ago, so this lovely passage made my day:
€œDespite letters and commentaries (and even scientific studies) the PACE trial remained the gold standard for treatment, endorsed by every major medical organization. Finally, in 2015, the journalist and public health expert David Tuller published a 15,000-word critique of the study, and the tide began to turn.€
(As I have made clear, my work piggy-backed on the devastating critiques of PACE that had already been disseminated by patients and advocates before I wrote anything about it, and the heroic Alem Matthees pursued the tribunal case that liberated the trial data. The discrediting of PACE has been a collective effort.)
Levinovitz also spoke with bioethicist Diane O’Leary, who has written extensively on so-called €œmedically unexplained symptoms,€ or MUS. The attention to MUS is a welcome development because the term’s problematic implications are little recognized. As I’ve noted previously, the phrase MUS is neutral on its face, as in, €œat the present time, these symptoms are medically unexplained.€ But champions of the MUS construct often appear to interpret it to mean €œmedically unexplainable symptoms€, as if the production of all new medical knowledge has ceased. That interpretation has vastly different implications for treatment, research and policy.
(Unlike in the US, the MUS approach is deeply embedded in the UK’s National Health System. . The NHS’ Improving Access to Psychological Therapies program lumps what it refers to as CFS/ME and irritable bowel syndrome, among other conditions, into the MUS category. The IAPT program shunts these patients off to receive CBT and related interventions.)
Levinovitz also communicated with Professor Jon Stone, a neurologist at the University of Edinburgh and an expert in the category called functional neurological disorders, essentially a large subset of MUS. The article included Professor Stone’s thoughts on the thorny issue of €œpsychogenic non-epileptic seizures.” Yet it did not include a discussion of CODES, the high-profile study of a course of cognitive behavior therapy as a treatment for these seizures–rechristened €œdissociative seizures€ to reduce the stigma involved with telling people they have a psychogenic disorder. (I have blogged about CODES here, here and here.)
Professor Stone was a CODES co-investigator, as was Professor Trudie Chalder, a cognitive behavior therapy expert at King’s College London and one of the lead investigators of the discredited PACE trial. The main findings were published last year in Lancet Psychiatry, a high-impact journal. With more than 350 participants, CODES was a major test of the biopsychosocial approach to FNDs. The primary outcome of the study was the number of dissociative seizures per month. The CBT was designed specifically to address whatever mechanisms were presumed to be driving these seizures.
Unfortunately for the investigators’ theoretical framework, those who did not receive the specialized seizure-reduction CBT had a greater reduction in seizures at the end of the study than those who did receive the specialized seizure-reduction CBT, although the difference was not statistically significant. In addressing these embarrassing and presumably unexpected results, Chalder, Stone and their colleagues did not conclude that the CBT intervention had failed. Instead, they argued that seizure reduction was likely not the optimal primary outcome after all–even though they had invested significant time and money in the notion that it was. After rejecting the appropriateness of their own primary outcome, they touted some very modest benefits in a few self-reported and subjective secondary outcomes.
King’s College London issued a press release in which Professor Chalder hailed the “effectiveness” of the intervention without mentioning its lack of effectiveness for the primary and most important outcome of seizure reduction. The release itself presented the study as a success but also did not mention the null results for the primary and most important outcome of seizure reduction. Professor Stone was quoted as well in the KCL release; presumably he read it at some point. Perhaps neither he nor Professor Chalder thought it was important for the university to disclose the null results for the primary and most important outcome in disseminating information about the study to the media.
But I digress. Levinovitz ends his VICE piece with a call for doctors to be willing to say €œI don’t know.” That call is definitely on point. In a 2020 commentary about MUS in Medical Humanities, a BMJ journal, Northwestern University law professor Steven Lubet and I ended with a similar appeal: €œPatients would be better served by greater humility accompanied by an understanding that medical categories are always provisional and therefore subject to change with advances in research.€
Alan Levinovitz has navigated these complex cross-currents with intelligence and empathy and nuance. I am delighted he took this on and gave the matter the attention it deserves.