By David Tuller, DrPH
[*See correction in third paragraph]
Three Norwegian researchers recently published an attack on critics of cognitive behavior therapy and graded exercise therapy as treatments for ME. The article, called “Facts and Myths about ME,” was published by the news organization Aftenposten. The authors, from the Scandinavian arm of the CBT/GET ideological brigades, asserted that “the cause of ME is most likely a combination of biological, psychological and social factors”—but they provided no convincing evidence for this causal claim. (I don’t read Norwegian, so I am relying on Google translate here. I apologize if the translation does not accurately convey the authors’ meaning.)
They also asserted the following: “Cognitive behavioral therapy and graded activity adjustment [an alternative term for GET] can make many ME patients healthier…This claim is thoroughly documented. It is fraudulent to claim that there is scientific evidence that such treatments make patients sicker.”
The word “fraudulent” is linked to a post called “GET and CBT are ineffective or cause harm in ME-patients” published* by Nina Steinkopf, a Norwegian patient, on her blog site, MElivet, which is an invaluable resource on domestic developments. *[This sentence has been corrected. I originally wrote that the blog post was written by Steinkopf. In fact, it was written by someone else.] The Afterposten authors’ charge is absurd.
But wait a minute! Isn’t my objection hypocritical, since I recently wrote that the PACE trial could be called “fraudulent”? The answer is no. I backed up my point by highlighting a specific quirk of PACE: The investigators failed to report the salient fact that 13% of the 641 participants were already “recovered” for physical function at baseline, even as they were simultaneously defined as seriously disabled on the same measure. It is logically impossible to be recovered and disabled on a scale at the same time. Such a bizarre paradox, however it occurred, is clearly deceptive and misleading.
In contrast, by arguing that the success of CBT and GET is “thoroughly documented,” the Norwegian researchers demonstrated that they harbor grandiose notions about their own scientific acumen and research. The “documentation” to which they referred emerges largely from unblinded research that depend for its claims of effectiveness on self-reported outcomes—a study design fraught with an unknown amount of bias.
Notably, the Norwegian authors did not acknowledge the consistent failure of objective outcomes to match these positive self-reports. While there are no accepted diagnostic medical tests for ME, many studies have included objective measures of function, like a walking test, a step-test for fitness, employment outcomes, and actigraphy. In multiple cases, investigators have published the positive subjective findings and hyped the treatments as effective while only reporting their poor or null objective results in later papers that receive significantly less attention. This sort of selective outcome reporting is an unacceptable and rather deceitful approach to the presentation of study results.
The authors cited a 2021 Norwegian study of CBT that seems to be following a similar pattern. The reported findings came from responses to self-reported questionnaires. And yet the authors also investigated a number of objective outcomes, specifically “an indirect VO2 max test, muscle tonus, muscular tender points and a brief neurological examination.” However, these outcomes, according to the paper, “were obtained for clinical use and later articles.” Of course! Why bother reporting them now?
Was this decision to report the objective findings completely separately from the subjective ones made when the study was launched or only after the results were examined? If past experience can be a guide, we can consider it possible or even likely that the objective findings were unimpressive and disappointing.
Furthermore, it is inaccurate to declare that the available data indicate that these treatments make patients “healthier.” In fact, the treatments appear to lead to improvements in how patients describe their symptoms–even when objective outcomes from the same study contradict such glowing accounts. In the discredited PACE trial, the investigators chose to dismiss their own objective outcomes, which yield disastrous results, as not objective after all.
The Aftenposten * [*I initially misspelled this and the next mention of the publication as Afterposten] authors also argued that there is no “scientific evidence” of any harm from GET. In the article, however, they dismiss reports from the US Institute of Medicine (now the National Academy of Medicine) in 2015 and the National Institute for Health and Care Excellence (NICE) in 2021 as “not research” [italics in the original]—even though both organizations surveyed the extensive evidentiary base before drawing their conclusions. Instead, they cited a flawed exercise review from Cochrane that Cochrane itself acknowledges is inadequate—which is why the group is carrying out an entirely new review.
Presumably the authors also believe that many patient surveys documenting reports of harm from GET are not “scientific evidence.” Nonetheless, they cited the testimonials from Recovery Norway, an organization that promotes the woo-woo Lightning Process as a cure, to support their argument that patients can “completely recover” from ME. I guess these anecdotal, unverified accounts from a limited number of patients can be cited in a “scientific” debate while survey results from thousands of patients cannot be.
Finally, the authors cited a commentary in The Lancet, noting its perspective that the new NICE guidelines “are based on ideology, and not science.” But they failed to inform readers that two of the three authors of the Aftenposten screed are also the lead and senior authors of the Lancet editorial. So they cited themselves without making this clear—a disingenuous and dishonest approach to scientific debate.
In short, their article is poppycock.
(Originally posted on Virology Blog.)