Yes, sorry, it was unfair. Especially since you are one of the few people that is really listening to us. I suppose the frustration of it all, seeing yet more research efforts going in what I think is the same old backwards direction. I'm also acutely aware of how patients' concerns have been silenced by casting them as somehow simply personally "uncomfortable" with a psychogenic interpretation.
And maybe I did only speak for myself - maybe some of us here on PR are worried about words like "belief"?
I think we really do agree on this. To me, this is the very reason we refer to these as "levels of description". But we're not there yet - if ever - and we need to be aware of the dangers of incorrect translation.
If you're talking about the psychogenic movement disorder/Bayesian stuff, then Edwards talks about various levels of "belief". The patients form a powerful and very conscious belief that they have a movement disorder (when they in fact don't, or at least not any more), but this belief becomes a self-fulfilling prophecy because it operates to shape their movements at pre-conscious level. There's no role in the model for childhood trauma. But there needs to be psychopathology for the powerful belief to be formed/maintained: depression, anxiety, an intense focus on bodily symptoms (and/or too much time spent on forums like this one
).
To cut through some of the terminological confusion, we could instead put the focus on causation. In your example, the question is: is the problem
caused or
significantly exacerbated by a maladaptive response from the hypothalamus? To the extent that changing its response could significantly improve the condition and/or its major symptoms (without intervening at the level of autoantibodies)?
Or is the hypothalamus responding normally and the root cause is the autoantibodies themselves? To the extent that
only changing the latter will lead to real improvement?
My worry with the Edwards/Harrison thing is if they study the first type of question without looking at the second (which seems likely given what has been reported), they will end up with an incorrect causal model - a maladaptive brain response model - when the real problem is way further downstream.