Why the BPS people think the way they do

[Pateo]

I seem to have a different view about the BPS theories than some commenters here. I don't think the flaws are "obvious". Quite the opposite: I find the BPS ideas' subtlety is what makes them so effectively dangerous.

When I read my country's mecfs policy a year ago, I thought it was pretty good. Today I recognize it as heavily influenced by BPS proponents and preventing biomedical research.

When I discuss the BPS model with people close to me, they are often attracted to the ideas, and in the past I have found it hard to refute them. They "know someone that recovered" or hear "mind and body are connected" and are convinced.

The local BPS professor supports their claims with trial data (Fukuda criteria) and "values good science". They stay vague enough so that they are not *obviously* wrong. The B in BPS gives them credibility.

The history and prejudice (which I was guilty of too) don't help either. It is easy to be seen as a difficult patient.

I can see why policymakers, practitioners, patients, even researchers fall for the BPS ideas.

Effectively challenging those ideas requires more than exposing the flaws in the science behind them.

I think that you want to say that you believe ME/CFS to be on a spectrum and not being a syndrome. A syndrome is a distinct, uniform illness that shows up fairly similar in most of the patients.

You may of course believe anything.

However, from the research at hand it is already clear that ME/CFS is a syndrome. This is not just judged from the outer symptoms with its typical features of flu-like inflammatory episodes, a sore throat, pathological exhaustion and PEM but also from the changes in the immune system and other parts of the body.

I said exactly what I wanted to say and it appears that what I wrote was misunderstood. The spectrum to which was refeŕred is the spectrum of severity as well as the spectrum of personalities and their individual responses. Please feel free to believe whatever you want to believe.

 

[rvallee]

They stay vague enough so that they are not *obviously* wrong.

Which is what makes it all obviously wrong. What they describe today is just as vague and generic as it was a century ago, despite being forced onto millions. But popular beats correct every single time, and vague woo nonsense like this is very popular and alluring, despite being disastrously wrong. Most of human history is made up of weird stuff like this, we are an incredibly weird species that easily gets stuck in loops of failure.

It doesn't change that making important health decisions on the basis of the flimsiest possible evidence base is insane, and borders on criminally insane. But in the same vein, legal does not mean right, and lots of widely accepted and legal things are wrong, although in this case everything happens in special exemptions, such as vaguely arguing that it's not medical, or psychosomatic, or psychological, it's all, but also none.

Humans are still just as guided by beliefs as we've ever been. They just operate within a smaller domain than they used to, but they can still completely dominate, even in important matters, even with experts. A few years ago it was revealed that a South Korean president had been making most of her decisions based on astrology, through some weird spiritual guru. Same thing, really. Humans are absurdly weird in all sorts of ways.

 

[Pateo]

Isn't that true for any illness, if you mean the experience of living with the illness. But scientists and doctors can understand a lot about cancer, PD, diabetes, and many other diseases, and thereby find and apply useful treatments, without ever having first hand experience.

Do you think ME/CFS is different from these other conditions? Do you see any value in genetic, metabolomic, and other sciences being applied to learn more about ME/CFS?

To answer your first question: Yes and No. Second question. Yes, there is a great deal of value to the scientists and researchers who justify and fund their careers.

 

[rvallee]

Genuinely, what is the right approach to challenge this?

Unfortunately there isn't. Beliefs can't be challenged, humans are not capable of overcoming them without a replacement. We have tried everything, and the data speak for themselves. It turns out that most humans, including those in charge and technically responsible, are perfectly content with paying more for worse outcomes for everyone, as long as they feel that bad is actually good.

There is a famous quote from Buckminster Fuller that captures it perfectly: "You never change things by fighting the existing reality. To change something, build a new model that makes the existing model obsolete".

Nothing will change until the real cause is identified, and every institution of public health and medicine will fight us until then, will never cede an angstrom of ground. It's how humans function, unfortunately. Everything we do is subject to this, it has nothing to do specifically with us or this problem.

 

[rvallee]

That is the problem. The rot goes all the way to the top, with the occasional exception.

And almost without fail, it's personal. It doesn't guarantee they will make any effort, but almost everyone who gets it only ever does because they have seen it first-hand in a person close to them, and actually believed it. Even in medicine, belief is everything. It can cancel literally everything, even so-called "human rights".

And seeing the material health care professionals have to work with, it's not surprising. It's simply not possible to have even a minimal understanding of ME/CFS based on what is in textbooks and guidelines, it's pretty much fiction. They might as well be using the Scientology stories, it wouldn't make much difference in outcomes.

And all of this is a choice. None of this happened by accident. The trolley was loaded and the tracks were filled with people and the lever to pull it off track was simply yanked out and melted, then the track was set in a loop and an industrial rolling belt of sick people was installed to make sure the trolley will hit as many as it possibly can.

Basically it's a level of evil that would be comparable to the tobacco industry working to make cigarettes more addictive after everything was revealed, a revelation to them that they can make even more money. And that level of institutional evil makes it especially hard to fight back against, because people can't process this level of malicious incompetence. It's too hard to believe, especially about medicine, so, like many wars and other horrors human are capable of, everything and everyone just keeps escalating it as long as they can.

 

[Pateo]

I think that you want to say that you believe ME/CFS to be on a spectrum and not being a syndrome. A syndrome is a distinct, uniform illness that shows up fairly similar in most of patients.

You may of course believe anything.

However, from the research at hand it is already clear that ME/CFS is a syndrome. This is not just judged from the outer symptoms with its typical features of flu-like inflammatory episodes, a sore throat, pathological exhaustion and PEM but also from the changes in the immune system and other parts of the body.

You may of course believe anything, but what you believe I meant to say is wrong. I said exactly what I meant to say and I believe you have not understood...or, alternatively, your comment may be disingenuous, or even provocative. Please read what I wrote more carefully. Because I'm new to this forum doesn't mean that I haven't been doing my homework for 40 years.

 

[Hutan]

Moderators have decided that discussion of the legitimacy of autism labels is off-topic for the thread, largely out of scope for the forum, and is causing unnecessary concern. We have therefore deleted existing posts on that topic in this thread.