By David Tuller, DrPH
It is extremely dispiriting to have to respond to yet another wail of desperation from psychologizing dead-enders who have lost control of the narrative over the nature and treatment of ME/CFS and long Covid. This most recent screed, published last month in the Scandinavian Journal of Primary Health Care, has been written by a group calling itself the Oslo Chronic Fatigue Consortium—a collection of dozens of self-styled “experts” that includes Norway’s Lightning Process queen, Live Landmark. In other words, in this article, these folks have all linked themselves to a woo-woo “mind-body” intervention developed by British osteopath and spiritualist Phil Parker, who has claimed he can “step into other people’s bodies…to assist them in their healing with amazing results.” He also once co-led a course on the use of auras, Tarot cards and related approaches to achieve better health. (I’ve often wondered why, if these modalities were as helpful as claimed, why he bothered to with create the Lightning Process in the first place.)
In essence, Landmark’s presence as a co-signatory suggests that the Lightning Process is more or less equivalent to standard approaches like cognitive behavior therapy and graded exercise therapy. Whatever! (Do they all understand that the recent decision to remove a patient from Norway’s ongoing LP study because she dared to express concerns about the approach on social media is an admission that you have to commit to believing the process will work in order for it to actually work? Is that science?)
In paradigm shifts, those on the wrong end of the equation typically struggle to maintain their professional footing. This ultimately unsuccessful flailing for relevance, as I noted with my colleagues Brian Hughes and Steven Lubet in a recent essay for the health policy journal Health Affairs, often involves efforts to deflect attention away from the emerging science through the constant repetition of already debunked claims. By hitching their fates to a faith healer like Phil Parker, this group of losers has further doomed itself to obsolescence. It is rather astonishing to witness a group of well-regarded (by some) pooh-bahs engaging in this sort of intellectual self-immolation.
The article from the Oslo consortium is a hodge-podge of debunked arguments and evidence-free pronouncements. First, in an insult to patients and the scientific community, they refer to CFS/ME rather than ME/CFS and suggest that all forms of extended “fatigue”—including what they call “burnout”–are more or less the same condition. They dismiss the reality of post-exertional malaise (PEM) as a specific symptom for ME/CFS and long Covid, claiming that it “also occurs in patients with other diagnoses.” Strangely, the reference for this claim is the 2015 report from the US Institute of Medicine (now the National Academy of Medicine). In reality, this report rechristened PEM as “exertion intolerance” and reframed ME/CFS as “systemic exertion intolerance disease.” In other words, per the IOM report, PEM, or exertion intolerance, is a core characteristic of ME/CFS and is required for a diagnosis. It is hard to fathom why these people cite the IOM report to make the exact opposite point. Are they stupid, or just dishonest?
The Oslo consortium article also suggests that the prevailing “narrative” it seeks to refute presents “CFS/ME” as “incomprehensible and incurable.” This is a straw-person argument. No reasonable person, as far as I know, has claimed that ME/CFS—and by extension long Covid–is inherently “incomprehensible and incurable.” The argument made by patients and responsible scientists and clinicians is that these illnesses are not “curable” with current interventions based on unproven hypotheses attributing them to dysfunctional illness beliefs and unreasonable fears of activity. Certainly the scientists who recently published their significant findings of long Covid pathophysiological dysfunctions in the prestigious journal Nature do not remotely believe that this post-acute viral disease is “incomprehensible.” In fact, they have provided evidence that multiple etiological pathways are possibly or likely implicated in the devastating symptoms being reported by millions of people around the world.
And then there is this statement: “Patients do recover and get back to work, and patients can get help that improves their chances of recovery.” This is more nonsense that is contradicted by the data. I recently co-authored a paper that tracked the occupational outcomes from multiple CBT and GET studies of ME/CFs and found that claims of people getting back to work are bogus—completely untrue. And the data from the discredited and arguably fraudulent PACE trial, when re-analyzed according to the outcomes described in the protocol, documented that there were no differences in “recovery” rates between the CBT and GET groups and the non-intervention arms. “Recovery” rates for all groups were in the single digits. (Disclosure: I was a co-author of this reanalysis.)
Perhaps the most ridiculous point made by the Oslo consortium is that their proposed approach somehow represents a “new perspective.” Anyone who has followed this debate knows that this statement is preposterous. The CBT/GET approach has dominated the field and scooped up the lion’s share of research funding for more than three decades—a fact that these authors would prefer to ignore. In other words, they have had their chance to make their case, but they have failed miserably. The patient community and legitimate investigators have flatly rejected their claims; after all, in revising its ME/CFS guidelines, the UK’s National Institute for Health and Care Excellence dismissed the quality of the evidence in favor of CBT and GET as either “very low” or just “low.”
The members of the Oslo Fatigue Consortium can cry and rant and stamp their little feet as much as they want, but it won’t change the facts. Like Tennessee William’s fading Southern belle Blanche duBois, these deluded but self-important investigators passed their sell-by date long ago.
(Originally posted on Virology Blog.)