By David Tuller, DrPH
Update: 6/26/18
When I wrote last week in the post below about Mike Godwin’s intervention into the PACE debate, I mentioned that “a PACE critic” triggered the events by tweeting a reference to “the banality of evil”–the famous Hannah Arendt phrase that emerged out of her coverage of the trial of Eichmann in Jerusalem. For more on the tweeter’s academic and professional background and on the context of the Arendt reference, please see the update at the end of the post.
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From the start, one of my strategies for this PACE-debunking project was to draw in outside experts–people with no ax to grind and no pre-conceived notions about the trial and its methodology–and encourage them to scrutinize the matter. It was telling that many well-regarded scientists and researchers were willing to make scathing public comments about PACE and the related claims being made by the CBT/GET ideological brigades. When Bruce Levin, a professor of biostatistics at Columbia, calls something “the height of clinical trial amateurism,” people should pay attention and stop maligning PACE critics as being irrational, anti-science or vexatious.
That’s why I’m delighted that Simon Wessely himself, in a recent Twitter exchange, invited Mike Godwin, an American attorney and social commentator, to review the PACE trial controversy. After scrutinizing the published record, including the PACE research and the special issue of the Journal of Health Psychology dedicated to the issue, Godwin pronounced PACE to be “so profoundly flawed that it cannot be trusted.” In response, Sir Simon attempted to re-direct the narrative, reiterating his own positive beliefs about the trial. What he fails to understand is that, despite his knighthood and his widely hailed courage in “standing up for science,” his beliefs and opinions are irrelevant here. In this case, the facts are what count.
And when outside observers assess the facts about PACE, they see what the critics see–an uninterpretable mess. Mike Godwin is known for the so-called “Godwin’s Law of Nazi Analogies”–a trenchant observation that he described this way in a 1994 article in Wired: “As an online discussion grows longer, the probability of a comparison involving Nazis or Hitler approaches one.” Almost 25 years later, this observation has retained its relevance and social currency.
In any event, the embroilment of Godwin in the PACE debate can be traced to Professor Michael Sharpe. He has been engaged for weeks in a relentless but ultimately incoherent pro-PACE tweeting campaign that has once again exposed his inability to defend the study’s methodological flaws. Recently, in response to something someone tweeted in one of these tweet-chains inspired by yet another Sharpe head-scratcher, a PACE critic referenced “the banality of evil”–the brilliant but exhausted Hannah Arendt phrase that emerged from the philosopher’s coverage of the Eichmann trial in Jerusalem. At that point who should jump into the tweet-fray but Sir Simon himself.
(I can’t see Sir Simon’s tweets. He blocked me a year or two ago when I tweeted that some drivel and nonsense he’d tweeted was in fact “drivel and nonsense,” or it might have been “nonsense and drivel.” Screen-shots of his recent tweets were posted on a patient forum.)
Apparently triggered into action by the Holocaust allusion, Sir Simon tweeted out to Godwin with an oblique reference to the Nazi-analogy “law” that bears his name. As it turns out, the two became chums decades ago when the young Simon attended an American high school as an exchange student. Who knew? Alas, bonds forged back then in chem lab or drama club were not enough to prevent Godwin from offering a blunt appraisal of the £5,000,000 garbage heap that Sir Simon has called “a thing of beauty.” (Godwin assured me that the two men remain friends despite their disagreement about PACE.)
Sir Simon has defended PACE up and down the queen’s realms, and he appears convinced of his own correctness. As he is fond of reminding people, he wrote the book on clinical trials so he knows something about them. (Can someone check whether Sir Simon’s book covers whether investigators can weaken outcome thresholds after data collection in ways that dramatically boost reported results?) But he appears blind to how others view the study. Did Sir Simon think his school buddy would end up bolstering his side of the argument? If so, he miscalculated.
Godwin did more than declare the trial to be “profoundly flawed.” In his comments, he touched on one of the main negative consequences of the PACE debacle–the fact that the trial and/or its CBT/GET recommendations have influenced how disability insurers and government social welfare agencies make their determinations. Here’s what Godwin, who also watched some of the recent Scottish parliamentary hearings on the issue, tweeted about that aspect of the debate: “It seems clear to me that the PACE trial will continue to be used to deny patients benefits. That sucks.”
Since Sir Simon invited Godwin into the conversation in the first place, the quick smack-down of PACE likely stung. But he managed to present a brave front in the face of the humiliation. In a series of tweets, he wrote back: “You won’t be surprised mike to find that I don’t agree with this. I continue to believe they did a good job with the trial and that it was carried out to a high standard the data is sound even if the results are relatively modest.”
Sir Simon even tweeted to Godwin the “ocean-liner PACE defense” essay posted by The National Elf website in late 2015, shortly after Virology Blog published my 15,000-word investigation. Despite his apparent fondness for this essay, the ocean-liner metaphor is a disaster for his argument, as Northwestern law professor Steven Lubet has noted. It is not just because of the inevitable Titanic association, although that’s a problem. But his account of how the navigators made mid-trip adjustments so the ocean-liner called PACE could reach its pre-determined destination raises further questions. To extend the metaphor, the goal of a clinical trial is to reach whatever destination you reach by following the course you committed to at the outset, not to reach a pre-determined destination by changing your course mid-way through–which is of course what happened in PACE.
Poor Sir Simon. He’s a smart guy but appears to remain mired in misconceptions. He doesn’t grasp that his defense of the PACE trial is intellectually and ethically bankrupt. Now he has unwittingly solicited some unvarnished comments about the trial from a childhood friend. Perhaps Godwin’s honest assessment will finally help Sir Simon accept with grace and humility what experts around the world have recognized: PACE is a piece of crap.
(Post-script: I wrote most of the above on Saturday. Afterwards, Professor Sharpe rejoined the conversation. I responded to his absurd comments in several tweets, which only reinforced my conviction that he is unable or unwilling to understand the legitimate concerns about PACE. In such circumstances, efforts at dialogue and communication seem pointless. On top of that, Professor Sharpe has now blocked me on Twitter, like his colleague Sir Simon.)
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Update:
“The banality of evil” is surely a phrase that has some value and applicability beyond the specific circumstances that inspired it. The robustness and validity of Arendt’s argument has been debated for decades by historians, moral philosophers, politicians, journalists and others. It presumably should be possible to raise the concept as part of a discussion about morality in science without it automatically being dismissed as “a Nazi analogy” and therefore out-of-bounds. Twitter is probably not the best place to do so, since the platform does not lend itself to reasoned or nuanced argumentation.
In the case of the tweet at issue here, “a PACE critic” was an accurate but incomplete description of the tweeter. Claudia Gillberg has a PhD in education and has studied Arendt’s work. She is a fellow at the Center for Welfare Reform in Sheffield, England, and senior research associate at the National Centre for Lifelong Learning at Jonkoping University, Sweden. In the tweet, she noted the “horrendous” consequences of the PACE trial and suggested that comments from Michael Sharpe provided “a glimpse into the banality of evil.”
I am not agreeing or disagreeing with Dr Gillberg’s observation but simply noting that this was not an off-the-cuff or unthinking reference. “My quoting of Arendt¦was in regard to the abdication of responsibility for one’s actions, rejecting your culpability for the consequences, in this case the suffering of ME patients,” she wrote in an e-mail.
Here is a paper Dr Gillberg wrote for the Centre for Welfare Reform: http://www.centreforwelfarereform.org/library/by-az/a-troubling-truth.html
Here is a link to her blog: https://uttingwolffspouts.com
For understanding this specific illness and chronic illness generally, Dr Gillberg also recommends the work of a fellow social scientist, Angela Kennedy, and in particular Dr Kennedy’s 2012 book: Authors of Our Own Misfortune?: The Problems with Psychogenic Explanations for Physical Illnesses.
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The Department of Work and Pensions has a case to answer as they spent public money and set up the study in the first place, with the motivation very likely to exclude people with chronic fatigue from their rightful benefits. I do hope that the person who enabled the study and paid the money will also be in the dock alongside the culprits who complied and did the fraudulant study. I hope the police are involved in this and that they will apply justice for the patients who have suffered greatly.
Question, M Sharp or SW sorry can’t remembe who tweeted, but did say PACE was never intended for ME/ CFs and we cannot get the lancet to retract. Can we at least since we have them on record request Lancet to add a note that the study does not apply to CFS/ ME?
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With a na pocket 1
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