landscape photo of stonehenge

Psychogenic ME/CFS: Turning the Nostalgia Up to Eleven

Some examples of comedy are jarringly impactful precisely because they feel so authentic. A personal favourite of mine is the 1984 movie This is Spinal Tap, the legendary mockumentary depicting a fictional English rock band attempting to rescue their dwindling reputations by organising one last big-splash concert tour. It is a classic-form hagiography about pride coming before a fall. And therein lies the humour. Who hasn’t laughed at exactly this type of thing time and time again in the real world?

The band Spinal Tap comprises a perfect trio of comical characters: a combative but error-prone braggart, a passive-aggressive enabler, and an innocent underling whose occasional philosophical interjections are as hilarious as they are surreal. Despite some obvious past successes, the band members display a frighteningly poor capacity for common sense. In one famous scene, band leader Nigel shows off a specially modified amp: an extra number has been added to the volume knobs, allowing them to be turned “up to eleven.” He suggests that this superficial adjustment is sufficient to make the band’s music actually louder. Nigel believes he can determine what reality is, simply by attaching his own labels to it.

For one concert, Nigel orders the set designers to construct a Stonehenge-style megalith as a stage prop. Unfortunately, however, his innumeracy lets him down. He inaccurately represents the required dimensions and when the resulting prop is unveiled, it is a mere 18 inches tall instead of the intended 18 feet. Undeterred, Nigel and the band just keep playing their music in the hope that the audience will somehow ignore their error. The audience, however, are not so easily fooled. They immediately burst into laughter.

Much of the humour in This is Spinal Tap stems from how the band’s tendency for self-aggrandisement is juxtaposed against their obvious shortcomings. They see themselves as hit makers, but others just see them as has-beens. As spectators, we derive joy from this delusion.

As much as they try to overcome their limitations by turning the volume up to eleven, at the end of the day we all see through their façade. This is a group of people who are just not that good with numbers, logic, empirical reality, or dignity. Their piety makes them farcical, and this makes us laugh.

But anyway, I digress!

* * *

So where were we? Well, apropos of absolutely nothing, last week saw the formal publication of that new paper purporting to summarise research on “evidence-based care” for ME/CFS. As you might recall, its authors seem to be oblivious to the findings of the recent NICE review of this very same topic. (These authors’ academic paper runs to three pages; the corresponding review by NICE required a 400-page document to explain.)

The trio who authored the new three-pager are long-serving proponents of the now discarded psychogenic theory of ME/CFS, the one that says that patients produce their own illness by thinking about health in self-damaging ways. Consistent with this idea, the new paper suggests that cognitive behavioural therapy (CBT) and graded exercise therapy (GET) can be used to successfully treat ME/CFS — in direct contrast with the NICE review, which concluded precisely the opposite.

In their opening paragraph, the authors of this new paper baldly state that the CBT/GET approach is indeed “evidence-based”. This is a somewhat presumptive framing for a paper that is purportedly about to “review the evidence” for these two therapies. Clearly, the authors have already made up their minds. But of course that is no surprise. They are especially likely to find this research convincing, given that they produced much of it themselves.

For the umpteenth time, it behoves us to recall that NICE’s review — which was independently conducted and far more thorough — established that the CBT/GET approach is not “evidence-based” at all. According to NICE, the research into CBT and GET for ME/CFS is so hampered by biases and shortcomings as to have no standing in clinical terms. NICE came to this conclusion having assessed no fewer than 230 separate study outcomes, a far wider research sweep than the authors of this new paper even attempt to consider.

David Tuller has written about the new paper’s many shortcomings here. He shows how it seeks to re-write history in an attempt to evade standard criticisms, and he expertly explains how the authors reassert the well-debunked psychogenic claim that improvements in ME/CFS can never be assessed objectively — a claim debunked not least by the very fact that the authors themselves employ such objective measures in their own research!

And even though this new paper appeared after NICE released its 2021 treatment guideline, the authors write as if the now discarded 2007 guideline was still in force. Clearly committed to living off past glories, their new paper was literally out-of-date from the moment it was published, little more than performative nostalgia in desperate search of an audience. A cash-grab greatest hits album. A failed comeback tour.

It would even be funny, if we hadn’t seen it all before.