What changes the minds of health professionals who hold a BPS view of ME/CFS?

We're seeing, with Covid, a lot of health professionals who believed in the 'false illness beliefs' BPS model of ME/CFS get Long Covid themselves and change their minds when their own personal experience forces them to face reality.

But what else changes their minds? And what can an individual PwME do to change their minds, faced with that attitude in a consultation or during a hospital stay?

Has anyone here actually changed the mind of a health care professional?

 

I know a prominent LC researcher changed their opinion on ME/CFS on the basis of their own research results. I think for many other researchers in the LC field that will be rather similar and sometimes these will convice their colleagues of the same. I find that rather problematic, since they changed their opinion on the basis of results that are more likely to be noise than anything else. Now their beliefs are based around some speculations and vague ideas, likely to start crumbling like a deck of cards once properly scruitinized or once no one reproduces similar results.

From what I can tell most of these researchers have stopped believing the BPS model of ME/CFS, not because they now believe in what patients are telling them or because they've spent time familiarising themselves with the evidence, but rather that they now believe in their own story and can fit the patient narratives around that. I think it's hard to convince anybody if beliefs triumph evidence, but more often than not you'll just believe what someone who you think has more authority on a subject tells you and that has in parts happened completely independent of whether what was told made sense.

 

This.

Almost 60 years ago, in an infant school assembly, our head teacher said "It's far more powerful to believe a thing than it is to know it". I remembered because I didn't understand it then.

It's hard for patients to change the minds of HCPs, at least when there's no ongoing relationship. I think I changed a GP's mind to some extent—to begin with, he believed the theory he'd been taught about ME/CFS being connected to depression. As he got to know me, he realised that what I'd said about rarely experiencing depressive symptoms was true, and that despite that, my ME/CFS symptoms were getting worse, not better.

 

I would guesstimate that not even half of MDs who experience LC change their minds about any of this. In many it actually reinforced their certainty. Humans are super weird. Those who recover, the majority with time, when you include short-term illness and mild symptoms, all seem willing to attribute it to their mental superiority, or something like it. Same with lots of people in general, although I would guesstimate at a lower % than MDs, because of their indoctrination.

At this point, I assume that most never will change their minds. Not even when they will have had a full working solution, with reliable tests and treatments. They will simply reassess their past beliefs to make them fit with what they know, will genuinely believe they never got it wrong in the first place, or that it doesn't really matter either way, and see no disruption or conflict between either. At a slightly higher rate than the general population. Because at its root it's a human problem, compounded by medical indoctrination making them believe things that don't make sense.

We can look back at when the psychologization occurred. Before that the psychosomatic model was fringe, and alternative medicine was considered woowoo. Then things changed, MDs got told the current fake model, so they started applying it. Then scientific medicine integrated alternative medicine in a process where all of this can be rationalized in an ideological framework. It's not their job to think about what is and what isn't, even less why. Their job is to see thousands of people per year with thousands of potential problems and try to fix as many as they can with as few resources as they can. So in most cases all they can do is comply with instructions, and backfill the reasons for if they are ever faced with questioning about such a radical shift. They don't have time to do anything more. They certainly don't have time to do any research. And even then, most medical researchers fall for the same trap anyway.

So any real change would have to be in some form of being told, from above, medicine is as hierarchical as militaries, that this is now that and that's final. Even then most wouldn't consider it changing their minds, as it's largely irrelevant other than rationalizing what they do. They would frame is as "the science changed" or something like it. Again, not because they are doctors, but because they are human and this is how humans operate: we don't make sense. Ever. We just approximate it, sometimes close enough, sometimes just far away enough that it's the same as missing the point entirely.

It's easy to forget that anyone born in a vault in the ground, who gets told that this is all the life that is, can't ever tell the difference. We have no intuitive way of knowing how the universe works. All knowledge is artificial, constructed by humans for humans. No physician trained in the arduous process they go through can see fit to question what they are taught is true. They get flooded with masses of knowledge, they don't have time to ponder what is true and what isn't, and can't work it out on their own anyway. Figuring things out is hard. Sometimes millions of times harder than simply memorizing and applying it where it's thought to apply.

I don't ever see it happening. Eventually newly-graduated MDs will have always known about the correct model and how things work, so there will be no minds to change. But the shift from having professors of medicine who have been taught the wrong model going on to teach new students that they got it wrong, so the students will now get it right, is something that can only come from above and enforced for compliance. At least unless we get something similar to peptic ulcers, with a fully packaged solution all at once. Then they will have simply always been at war with East Asia, and anyone saying otherwise is just wrong.

And even then no one will really change their minds, because rationalizations usually happen afterward. And once people change their minds, they simply rationalize that this is how it always was, or that it's equivalent to some magical force out there, hence "the science changed". This is the great human flaw in how our intelligence works: it barely does. We can go through thousands of generations barely learning anything, then some generations can see multiple radical changes within their lifetimes. Meanwhile us, humans, are the same. As long as we remain the same as our biological ancestors, we will carry this flaw within ourselves. Flaws that we amplify with dysfunctional institutions where power and influence dominate everything, far above "the mission".

Beliefs always matter more than knowledge. Always. Reality, facts, they are barely relevant. It's what people believe about them that matters. And humans rarely make sense. We don't have what it takes. It takes an entire civilizations hundreds, thousands, of generations to figure basic stuff out. So beliefs is all we have as individuals, all that matters. The rest can always be rationalized one way or another. And it sure is.

 

I wonder about that Internist I saw 30 years ago who told me he believed in CFS but didn't believe it could last for 10 years thinks now that millions have LC.

I was a little shocked to read how some doctors who have Long Covid feel dismissed by their colleagues. Some have completely stopped communicating with them.

 

How do I “super like” this comment ahha. Thank you for writing it, really appreciate the read.

 

Unfortunately some won't believe until they get it themselves.