By David Tuller, DrPH
What is it with the health care establishments in northern Europe? Why are they so devoted to non-evidence-based approaches to treating serious medical conditions? Why do they trust arguably fraudulent research, like the PACE trial and Professor Esther Crawley’s pediatric Lightning Process study? Why are the authors of these studies respected and even esteemed among some high-level circles in these countries?
The mind boggles.
The latest on this front is an upcoming gathering in Finland that provides a platform to leading lights of the CBT/GET/’amygdala retraining” ideological brigades. Sponsored by Helsinki University Central Hospital (HUS) and scheduled for March 16th, it is called “Navigating the Unknown: Exploring Realities and Best Practices for Long Covid.”
Here are some of the questions the conference promises to explore: “What is the difference between long Covid and Post Intensive Care Syndrome? What are the relations of Long Covid and chronic fatigue syndrome (ME/CFS)? Are there some risk factors for developing symptoms of Long Covid?” Well, that all sounds reasonable enough.
Then there’s this: “This symposium will focus on the bio-psycho-social aspects of this disorder.” Uh, oh! More biopsychosocial propaganda.
Millions Missing Finland, an ME/CFS advocacy organization, has tweeted concerns about the gathering. In a thread that highlighted the problematic views of most of those presenting, the organization noted that “we find the speaker list peculiar and worrying.”
The list of speakers is indeed problematic but not surprising.
A prominent HUS physician, Helena Liira, is opining about “the Finnish experience from the Long Covid outpatient unit.” Dr Liira and I exchanged e-mails last year after I criticized a clinical trial for which she is the lead investigator. The trial, sponsored by HUS, is studying an intervention for people with “functional” disorders, including long Covid. The intervention is described as “amygdala and insula retraining”–even though the study includes no effort to measure anything related to anyone’s amygdala or insula.
Dr Liira is essentially running a trial of the Gupta Program—one of the multiple mind-body approaches currently being marketed to people with chronic illnesses, including long Covid. The eye-catching claim—that amygdalae and insulae are being retrained–is solely a marketing device derived from grand-sounding but largely meaningless speculations about the brain by the Gupta Program’s founder, Ashok Gupta. Whatever might be happening, there is no evidence that any amygdalae or insulae have undergone retraining.
Dr Liira and the ethical review committee that approved the study apparently see no problem with describing an intervention as purporting to involve something as complex as “amygdala and insula retraining”–even though this has zero to do with the study itself. They don’t think this sort of promotional hyperbole can possibly bias any of the study subjects. I disagree. Since the trial is already flawed for multiple reasons, as I discussed here, this nomenclature issue simply further undermines the credibility of any findings.
Professor Sharpe is having a Norma Desmond moment
Also on the Helsinki conference schedule is Professor Michael Sharpe, one of the lead investigators of the PACE trial. Professor Sharpe frames legitimate criticism of his disastrous study not only as “harassment” but as an attack on Science itself. Whatever. The relevant point is that PACE and its GET/CBT approach have been rejected by the US Centers for Disease Control and Prevention, the UK’s National Institute for Health and Care Excellence, and other leading health agencies. The PACE trial has been used as a pedagogical tool in epidemiology graduate seminars at UC Berkeley–as a case study in awful, unethical research. And 100+ experts from around the world signed Virology Blog’s open letter to The Lancet about PACE’s “unacceptable methodological lapses”–as reported in The Times and BMJ.
Nonetheless, this Oxford don is having his Norma Desmond moment! (Watch this clip from the Hollywood classic Sunset Boulevard if you don’t know what I’m talking about.)
Besides his upcoming appearance in Helsinki, two major features in high-profile US publications—New York Magazine and The New Republic—recently included respectful interviews with Professor Sharpe. The articles presented long Covid as largely a “functional” or psychosomatic disorder and allowed Professor Sharpe to spout some of his standard self-serving slop. Apparently the journalists believe it is fine for a study to include participants who were already “recovered” on key outcomes at baseline–as was the case in the PACE trial. Apparently the organizers of the Helsinki conference agree. Enough said.
And then we have Professor Paul Garner discussing “how to recover from long covid.” It has been surprising to watch the entire BPS world, which claims to care about evidence-based medicine, accept one person’s illness narrative as proof that everyone should be able to cure themselves with strong manly thoughts—just like Professor Garner. I wrote about him here.
A psychologist from Bergen, Norway, Professor Gerd Kvale, is offering a talk on “concentrated treatment” for long Covid. Professor Kvale and colleagues have developed a three-day rehabilitation program, conducted in small groups, involving “a combination of teaching, individual conversations and physical activity and training.” And this: “Understanding and acceptance of the health challenges combined with techniques that aim to increase flexibility and activity are important. In particular, emphasis is placed on recognizing and getting help to break patterns that can contribute to maintaining the ailments.”
Hm. Sounds like a concentrated program of CBT/GET to me, perhaps with a little amygdala and insula retraining thrown in.
Avindra Nath, who is intramural clinical director of the National Institute of Neurological Disorders and Stroke at the US National Institutes of Health and a leading long Covid investigator, is giving a remote presentation called “What is long covid?” Dr Nath’s participation in the event has generated some comment and discussion on social media. Given the conference’s frank embrace of the biopsychosocial approach, his appearance could be seen as lending legitimacy to this overall orientation. To counter any criticism, the organizers could point to Dr Nath’s appearance, and maybe that’s why they invited him.
On the other hand, there’s value in injecting some scientific and biomedical realities into this slate of presentations. Perhaps Dr Nath’s talk will highlight enough hard facts to inoculate at least some audience members from buying into the psychosomatic framework that will otherwise dominate the proceedings.
In any event, among those who care about serious science in this domain, the conference certainly risks damaging the medical center’s international credibility and reputation. Sad.