I don't think the problems to approaching symptoms are technical, the problems are inherently human. It's not simply a matter of doing some thing or another better when there are people in this field who weaponize ambiguity to promote their personal beliefs and ideology, a practice that has been ongoing for well over 150 years, normalized and seen as valid and good.
It takes a high level of empathy to understand patients' description of symptoms and relate to them in a meaningful way. I can't say generically in health and clinical psychology, but in the specific example of the ME ideologues and their approach to the disease, those people have no empathy at all, are completely incapable of understanding other people's perspective, but they are absolutely convinced otherwise. Empathy can't be taught, evaluated or improved upon. People have it or they don't and it's too nebulous to ensure this in practice. But there's no meaningful way to disqualify someone who lacks those skills from studying and practicing them. Just the same, these people completely lack in common sense, yet genuinely believe that they are paragons of common sense, which can't be taught or evaluated either.
With people like the BPS brigade, there is no technical change that will fix their complete inability to understand and integrate patients' reports of symptoms, they are fundamentally incapable of doing that, the same way an amusical person simply cannot learn music. It's like a telephone game where the very first person to hear the message has no intention of repeating the original message, their intent is to send an entirely different one of their own. It may have something to do with the original message, but more often than not they don't.
In the BPS ideology, when it comes to MUS in general and ME specifically, the "thought leaders" don't say what they mean and don't mean what they say. They have an agenda and prior beliefs that are impervious to real life circumstances. When a patient presents with facts that dispute their worldview, they simply reject those facts, they simply don't think they have anything to learn from experience. There is no getting through people like that and the flaws in this system are as fundamental as having corrupt politicians fix the corruption that allows them to thrive, it's contrary to their self-interest.
There is simply no relation between what we experience and report and what the BPS model of MUS/ME/FND/Whatever uses in practice. This is not a technical failing, it is their personal failing and the system of medicine, especially EBM, rewards this type of behavior when it comes to keeping alive the fantasy of psychosomatic explanations to pre-breakthrough disease.
The fact that the modern descriptions of MUS/ME/FND are identical to the before-breakthrough psychosomatic descriptions of peptic ulcers, MS, asthma and a host of other diseases shows that reality plays no role in the worldview of many. They have simply recycled the same insubstantial mess onto a different population without any afterthought, let alone any relation to the actual illness experience.
I don't know if you've seen the Star Trek: the next generation episode
Darmok, where Picard encounters a society that does not speak in direct language, making the translator unworkable. They only speak in metaphors and in order to understand their meaning the listener has to make an active effort of genuinely trying to understand the true meaning of their words, validate the various metaphors and reach a shared understanding.
Again going back to the BPS brigade, they don't actually care about the true meaning of our words, make no effort to correct their prejudices and place entirely different words in our mouths. When they say fatigue, they don't mean the same thing we mean. When we say it's so much more than fatigue, I frankly don't even know what they think. There is no technical fix for this, it's a human failing, one that goes back too long for a quick fix.
The solutions to this failure are much more fundamental than adopting a different technical approach. Where ideology dominates some people's worldview, there is no technical solution that will counter that massive flaw in the system, it's rot from within. I don't think this can be resolved without significant patient engagement at all levels, at every junction, in every function and in such a way that gives real power to patients in correcting invalid thought processes that come from unaccountable people working in an unresponsive system.
We are trying to explain the color red to people who have never seen in their life. Some have the right imagination, some simply reject the very idea that color is a real thing. Which has technical truth to it, color is a cognitive interpretation of light, but sometimes technically true is the worst kind of truth.
