Here I am, I wrote the piece, I welcome debate and discussion but I’m not willing to discuss what I wrote, I’m v busy now so not going to discuss it.
Just keeps happening doesn’t it?
Hi everyone, popping in again after a bit of break. Happy to be in the lion's den! Thanks for your welcome, and also for your no-nonsense approach.
Since you all like tough love, I'm going to give you some. It's not going to be about the WIRED piece, or any of the arguments I've made here and elsewhere. At least not in a direct way.
Instead, I'm going to start with Mr. Magoo, who seems to be accusing me of...not welcoming debate and discussion? I think this (hilarious) accusation is quite instructive. I've spent a great deal of time here, on Twitter, and in personal correspondence and conversations with people who have reached out to me, discussing and debating my WIRED piece. Hours and hours and hours. In any normal reality, this would be an astonishing level of engagement. I have my life, my work, my friends, my wife and daughter.
But Mr. Magoo is part of this community. And in this community, if one is not endlessly on call, constantly responding to everything, tethered to their computer and spending every waking minute researching and thinking about this topic, they are blowing the topic off.
It "just keeps happening" because the level of engagement Mr. Magoo appears to demand of me is that of Ahabian monomaniacal obsession. Which brings me to something else I've seen discussed a great deal: my area of expertise, which is the formation of beliefs and belief systems, and how those are sustained.
I am a professor of religious studies, yes. As some of you have discovered, there's no clear "through line" or agenda to my work on the intersection of belief, science, and medicine. My first book was about the sociocultural forces that have led to the creation of food taboos, along with a gigantic mainstream scientific research apparatus generating enough noise that everyone could look into the Rorschach of nutrition data and see what they wanted to see. My second book was about the quasi-theological appeal of naturalness across various domains of culture: medicine, birth, economic systems, and so on. I've written about an MD/PhD who got sucked into quack autism cures, for WIRED incidentally. I've written about vaccine-hesitancy. I even wrote about long Covid for VICE in 2021, when I knew less about "the" condition (not really a "the" but let's leave that aside for now).
And here is something I can tell you with unequivocal certainty, a foundational truth in my own area of expertise. Monomaniacal obsession with a topic, in a community of people who share the same obsession, when physical health and personal identity (yes! even if you don't see it!) are on the line — it is not conducive to finding the truth. There may be excellent expert discussions — the best 9/11 conspiracists knew more about concrete and steel beams than most engineers — but when it comes to truth-seeking, it is far from ideal.
Consider a parallel community, which Jonathan Edwards is well aware of: the hEDS community. For those who are deeply, deeply committed to hEDS as a diagnosis, there is no arguing with them. They are intimately familiar with thousands of studies. There are physicians and geneticists and rheumatologists (it's true), all of whom spend their every waking minute thinking about hEDS. They do change their minds about some things, but there is one non-negotiable truth at the heart of the community: hEDS is a valid, explanatory diagnosis. It wouldn't matter if Edwards went over and laid out the very best arguments and evidence. It wouldn't matter if he pointed out that there's fundamental differences between hEDS and other established conditions, and the broader rheumatological community doesn't buy it. None of that would matter.
In THIS community, on the other hand, the non-negotiable truth is that "BPS" — whatever that means — is bad and false, and it is impossible that anything involving the "mind" is involved in sustaining the symptoms of ME/CFS. By mind rather than brain, I mean...well, I would try explain, as it's very complicated and difficult, but I won't, because this is the moment at which this particular community deploys its rhetorical defense mechanisms. "We've heard this before! It's the same BPS nonsense!" Those simpletons still puzzling over how to understand the relationship between mind, brain, body, and community, the philosophers struggling to articulate how those words themselves aren't helpful — if only they popped over here, to Science4Me, where it's all been figured out.
Allow me to suggest to the lions in this den that perhaps you have more in common with the hEDS "zealots" than you might think. (It is, of course, a feature of these communities that they are incapable of seeing their resemblance to other communities they scorn.) Perhaps you, too, have hidden some unfalsifiable truths under piles of research and discussions. Perhaps, if you stopped thinking about this in terms of the research, and started looking at yourselves from the lens of sociology, or, dare I say it, religious studies, you would see features of a community that, rather than conducing to the discovery of truth — though they may do that — are also serving another purpose.
As I have not oriented my existence around the interests of this particular community, I hope not to be accused of delinquency when I leave this here and don't reengage with it for a few days or a week. No doubt the lions will have torn it to shreds! I look forward to seeing how they've done so.
