By David Tuller, DrPH
I have often described the logic demonstrated by the biopsychosocial ideological brigades as Trumpian in nature. Like the fat loser about to be expelled from his big home in Washington, D.C., this cabal of British experts have long relied on â€œalternative factsâ€â€”in their case to promote graded exercise therapy and cognitive behavior therapy as effective treatments for the illness variously known as ME, CFS, ME/CFS, and other iterations.
The research they present to defend their bogus claims is riddled with flaws that their colleagues and enablers in the UK academic and medical hierarchy have chosen to overlook. First-year epidemiology students at Berkeley would receive failing grades for turning in assignments with similar issues. In this particular medical domain, the debasement of research practice has gone on for years, resulting in patients often being prescribed potentially harmful intervention regimens. This approach has also led to state terrorization of many British families, which have been threatened with child custody and social service proceedings when they refuse the interventions or when the childâ€™s condition deteriorates.
Yet just as Trump attacks those who cross him as traitors, members of the biopsychosocial ideological brigades seek to dismiss critics noting legitimate concerns as hysterics, harassers and science-deniers. They refuse to acknowledge their own obvious errorsâ€”even though these have been pointed out not just by patients but by distinguished researchers and academics from leading universities. Meanwhile, hypocritical journal editors rant publicly about the poor quality of science while refusing to clean up their own crap.
(Note to Lancet editor Richard Horton: If participants in a study can be considered â€œdisabledâ€ and â€œrecoveredâ€ on key measures simultaneously, donâ€™t publish it!)
In what might be an excessive burst of optimism, I am choosing to interpret last weekâ€™s rejection of our wannabe American dictator as a hopeful sign for the prospects of dethroning other false realities. I include among these the GET/CBT paradigm long espoused by Professor Sir Simon Wessely, Professor Michael Sharpe, and their ilk. Does Sir Simon continue to maintain that the PACE trial is a â€œthing of beauty,â€ as he once proclaimed? Or will he finally learn how to pull up his big-boy pants and acknowledge that he was wrong? That’s how people with integrity behave.
I started this project more than five years ago nowâ€”my 15,000-word investigation of PACE was posted on Virology Blog in three installments in late October of 2015. I figured it was a one-offâ€”just something I did because I could and because no one else seemed to be doing it. And here I am, five years later, still blogging away. This wasnâ€™t my original plan!
At first, I couldnâ€™t understand why the PACE papers were not retracted once their egregious lapses were fully exposed. I slowly realized that I had taken on not a study but a self-contained world-view and the entire infrastructure built upon that world-view. So Iâ€™ve kept trying to chip away at the building blocks of that world-view by reviewing the science that purportedly supports it.
In case after case, the science cannot withstand serious scrutiny. Of course, many in the patient community knew this years before I got involved.
As the GET/CBT paradigm continues its slow collapse, members of the biopsychosocial ideological brigades have been busy repositioning themselves. The British Association for CFS/ME recently issued a muddled statement that seemed to rebut its own previous positions on GET and CBTâ€”without explanation for the changes. Sir Simon recently suggested on twitter that these interventions were not based on the notion of getting more fitâ€”a 1984-ish effort to un-say what he and his colleagues have asserted for years about the role of deconditioning in the illness. Going forward, I think we can expect more of these verbal pyrotechnics from people who know they got it wrong.
Tomorrow, we will learn a bit more about whether the international reevaluation and repudiation of the GET/CBT paradigm in recent years has had much impact in the UK. NICE is a major arm of the domestic medical-industrial complex, and its clinical guidelines are used extensively in British medical practice. Moreover, NICE’s influence extends far beyond domestic consumption. NICE guidelines are routinely cited and followed by health officials and clinicians around the world.
Here’s what I recently predicted about two main points of the draft NICE guidance to be released tomorrow:
*GET will be discarded.
*CBT will be recommended not as a treatment for improving or curing the condition itself but as adjunctive or supportive care, similar to how it is used in the context of other chronic medical diseases. (The language on this might be a bit squishy or ambiguous to accommodate all parties.)
If my predictions turn out to be accurate, that will be big newsâ€”and evidence of some genuine change.