Why the BPS people think the way they do

[V.R.T.]

I am glad you gained some distance again to autism spectrum theory. I don't think it is a "subjective diagnosis". I simply think it's not a very good theory. And the pathologizing of normal is its most harmful flaw.

Are you aware that you stand in the hallowed company of Simon Wessely and Suzanne O'Sullivan with this belief?

The idea that autistic people don't exist or autism is a trendy diagnostic fad isn't some liberating thing. It's something that is being widely promoted by governments and the far right and is being used to take away care from people who need it, when there is precious little to go around.

I share your skepticism of much of psychiatric practice and am all too aware of the harm it does. But many autistic people struggle immensely, especially when young because society does not recognise our struggles or needs. Contributing to that erasure is unacceptable.

 

[V.R.T.]

I can't follow you when you say that your humanities background made you prone to buy into the bps model of ME. My humanities background made me highly aware that doctors managed to become a part of the political establishment in the 19th century in order to police the sick.

Yes but literature also is in love with the idea of psychosomatic illness and Freudian theory.

 

[PageofME]

Are you aware that you stand in the hallowed company of Simon Wessely and Suzanne O'Sullivan with this belief?

The idea that autistic people don't exist or autism is a trendy diagnostic fad isn't some liberating thing. It's something that is being widely promoted by governments and the far right and is being used to take away care from people who need it, when there is precious little to go around.

I share your skepticism of much of psychiatric practice and am all too aware of the harm it does. But people like me struggle immensely, especially when young because society does not recognise our struggles or needs. Contributing to that erasure is unacceptable.

As I said, I think that autism spectrum is a bad theory and I recommended to look into better theories.

If autism was a good theory folks diagnosed with it could be offered effective help and they would stop to "struggle immensely", don't you think?

 

[V.R.T.]

As I said, I think that autism spectrum is a bad theory and I recommended to look into better theories.

If autism was a good theory folks diagnosed with it could be offered effective help and they would stop to "struggle immensely", don't you think?

That implies that the problem is with autistic people and they just need the right kind of therapy to not have autistic traits anymore.

I'm not going to debate this with you. I strongly question why you feel the need to keep posting stuff like this on an MECFS forum.

 

[forestglip]

If autism was a good theory folks diagnosed with it could be offered effective help and they would stop to "struggle immensely", don't you think?

Do you think ME/CFS is a bad "theory" then? Or any disease with no treatment yet? pwME are not offered effective help and struggle immensely.

 

[Concentric_Spiral]

Probably some measure of just world fallacy lurking in the background. Easier to believe ME/CFS is psychosomatic than grapple with the unjust reality.

 

[Hoopoe]

You might be interested to read the classic Against Therapy. Emotional Tyranny and the Myth of Psychological Healing by Jeffrey Masson. It was written in 1988 – it should be expanded with a chapter on CBT for ME.

I made the mistake of going to psychotherapy and am currently processing the harm it caused.

Therapy seemed to be based on the world view that the patient is the origin of every problem. Which seems to be a way for adherents of this belief to distance themselves from a complex reality.

Therapy seemed to be hopelessly incompetent approach at understanding people and their problems, due to its lack of interest in context, history, and disregard for the personal understanding of the person.

 

[PageofME]

Do you think ME/CFS is a bad "theory" then? Or any disease with no treatment yet? pwME are not offered effective help and struggle immensely.

We have clear diagnostic criteria and the instructions on pacing, that's a start. There's herpes research and I use a herpes drug. I am hopeful about that.

I think we're going to get immune therapies at some point, because there's already a basic understanding of the immune defect in ME/CFS that's developing rapidly.

This are clear signs that we are getting somewhere, don't you think?

 

[PageofME]

That implies that the problem is with autistic people and they just need the right kind of therapy to not have autistic traits anymore.

I'm not going to debate this with you. I strongly question why you feel the need to keep posting stuff like this on an MECFS forum.

I can only repeat that I think you might find the books and theories that I recommended a better fit for the problems you struggle with and from there might find more helpful tools to help you deal with them than with what psychiatry offers to patients with an autism diagnosis.

And no, I am in no way an advocate of making personality traits go away. I am an advocate of not pathologizing them in the first place.

 

[forestglip]

We have clear diagnostic criteria and the instructions on pacing, that's a start.

There are several different criteria for ME/CFS. ME/CFS has pacing, and autism has recommendations to minimize overstimulation.

There's herpes research and I use a herpes drug. I am hopeful about that. I think we're going to get immune therapies at some point, because there's already an understanding of the immune defect in ME/CFS that's developing rapidly.

Ok, you're talking about speculative hypotheses. Autism has plenty of those too (e.g. 1, 2, 3).

 

[PageofME]

There are several different criteria for ME/CFS. ME/CFS has pacing, and autism has recommendations to minimize overstimulation.


Ok, you're talking about speculative hypotheses. Autism has plenty of those too (e.g. 1, 2, 3).


Yes.

You asked about ME. And now your talking about autism theory. I feel led astray.

I think we have to leave it at that. You find autism theory convincing and I don't because I think there are better theories and I have referenced them above.

My main problem with autism theory is that I think that it pathologizes normal.

When at the same time I believe that people who struggle a lot and are given an autism diagnosis – e.g. have serious psychiatric problems – would fare better with a personality disorder diagnosis because they are way more specific.

 

[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

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.

.

 

[forestglip]

You asked about ME. And now your talking about autism theory. I feel led astray.

Yes, I asked about ME/CFS to see why you would think it is a good theory while autism is a bad theory. You listed characteristics of ME/CFS as examples of why it is a good theory, so I pointed out that those characteristics exist for autism as well. Thus it is still unclear why you think one is a good theory and one is a bad theory.

 

[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.

 

[PageofME]

Yes, I asked about ME/CFS to see why you would think it is a good theory while autism is a bad theory. You listed characteristics of ME/CFS as examples of why it is a good theory, so I pointed out that those characteristics exist for autism as well. Thus it is still unclear why you think one is a good theory and one is a bad theory.

I've made my points above already.

I think that the biomedical theory of ME is better than the bps explanations. And I think that for the different psychological phenomena that are summarized and explained under the autism concept there are other theories that have better explanatory power and cause less problems for patients.

Again: I think it's tragic and scandalous that nowadays normal children are pathologized as deviant when there are better theories that claim that in fact they are not.

And at the same time young adults who struggle with serious psychiatric conditions, for example avoidant/schizoid, emotionally-instable or dissocial personality disorder, receive an autism misdiagnosis and thus can't access more acurate information on the self-defeating patterns they struggle with.

I don't understand why you think I am being unclear.

And please understand that I am not just talking from the books. I was misdiagnosed with fashionable but scientifically invalid C-PTSD syndrome as a teenager when I actually met the avoidant personality disorder criteria 100%.

I was then a victim of psychotherapeutic malpractice for the next 20 years when I managed to get better slowly and gradually with relaxation procedures, social anxiety exposure training, and group therapy in depression self-help groups that I co-facilitated. I did this all without the help of anyone by trial and error.

This was extremely exhausting and included a lot of unnecessary suffering.

Unfortunately, I only bumped into the literature on avoidant personality disorder when I didn't meet the criteria anymore and this was pretty horrible to find out. Especially when I realised that the specialists for that condition were exactly recommending what I had found out worked for me.

I think it's great when you feel that autism theory helps you. What's important for me is to let you know that it is important to check out other psychological and psychiatric theories as well because they might be even a better fit for you. Because you always want to have the best information available.

 

[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.

 

[Pateo]

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.

Are you aware that the concept of autism spectrum, ADHD, and other diagnoses are contested within psychiatry and that the idea of neurotypicality is an idea founding the identity struggles of a political movement but hasn't any scientific credentials?

Since I have myself a content oriented and critical personality style I might have fallen for these theories myself. However, there's better explanations within and outside of academic psychology. These theories have the advantage that they don't pathologize certain personality styles on the one hand while they also not put people with different psychological reasons for example for being easy-going and not-rocking-the-boat behaviour in one basket.

For example Ron Kurtz, the founder of Body-Centered Psychotherapy. The Hakomi Method after decades of practice with clients writes in his book of the same name that he's been meeting with folks with ten different and distinct coping styles. Lindsay Gibson who wrote the NYT bestseller Adult Children of Immuature Parents makes an extensive list of about 15 approaches to deal with life and in relationships unskillfully. The best theory however was developed by two Chilean scholars, one of them a psychiatrist who was able to come up with the idea that there was a healthy expression of personality styles that fit the unhealthy "personality disorders" in exactly nine distinct expression. The theory was given the name of the nine-type-personality-theory or Enneagram. Their contemporary "bible" is The Wisdom of the Enneagram by Rizo and Hudson.

Before these approaches the psychiatrist Jung and others were already working at such a theory because they were also witnessing distinct psychological styles with which to approach the challenges of life but got nowhere in the end.

I can highly recommend to check out these theories. I find it very sad and scandalous that so many normal and healthy children get psychiatric diagnoses at such a young age now with psychiatrists communicating to them that at their core something is abnormal and different with them when according to the above theories they simply have their strengths in other areas that are the most appreciated by our culture but have a completely healthy and typical expression of their psyche.

Jung did NOT get nowhere. It is well known that his main corpus was shared only with his immediate students and very little was published at the time. He understood that his thought was revolutionary and that it would take time and lifetimes to be disseminated and fully appreciated. C.G.Jung is not to be compared with the behaviourist simplistic pill pushers; Jung is entirely out of, head and shoulders above, their league. Go Google.