From Software to Hardware: A Case Series of Functional Neurological Symptoms and Cerebrovascular Disease 2024 Coebergh, Edwards et al

[poetinsf]

I'd think "software" refers to memory, belief and conditioning. Just another term for "it's all in your head". It's socio and psycho portion of sociopsychobiology, in other words.

Physiological FND is an oxymoron. If they found structural basis for what they've been calling functional, they should just retire the term "functional" rather than insisting on calling it FND with structural basis

 

[Ash]

Interesting--FND guru Tim Nicholson sees this paper as vindication and a defeat for all the "dualists"--as if he and his colleagues haven't been pushing this as a "software"-only issue for years. They see it all backwards.

One of the most embarrassing comms efforts I’ve ever had the misfortune to encounter.

I’m curling up inside.
The exploded head…?
Put that in your pipe…?
Okay.
You’ve travelled from a way back in the time space continuum where the internet insult conversations are different?
Now how does this translate…
You’re our FND crack dealer? Product now quality assured to give us a brain injury?

You want us to know you’re taking ‘our very real and serious’ conditions seriously so you’re online insulting patients as yet unconvinced by your research methods and those unsure of your professional integrity or good intentions towards them?
Or?
Others, working in the field of advancing healthcare, fellow researchers who you feel are on the wrong track?

If the people won’t respect you and your acronyms by choice, they’ll be forced to after that ‘mind blowing’ ‘smoking’ put down?

But, I’d guess that would be beyond his expectations at this point. Just keeping up the advertising. Believe us and us alone. Don’t believe your lying ears, eyes, critical thinking facilities etc.

Failing even that, he was simply aiming to be told what a piece of crap he and his work is. At this stage any attention at all.

Win win I guess. I mean not for the patients. They can go choke on his pipe. If I may sum up, in honour of his preferred style,
Is he right or is he right?!

 

[Sid]

According to Stone, one of the leading proponents of FND diagnostic creep, pretty much every symptom, including memory issues, dizziness, weakness, chronic pain etc., is FND.

https://twitter.com/user/status/1758831870484120007

 

[Peter T]

According to Stone, one of the leading proponents of FND diagnostic creep, pretty much every symptom, including memory issues, dizziness, weakness, chronic pain etc., is FND.

https://twitter.com/user/status/1758831870484120007

How many people will die from undiagnosed treatable conditions if following this credo.

 

[Ash]

How many people will die from undiagnosed treatable conditions if following this credo.

All of us. All of us are gonna die of preventable diseases or prematurely from progressive disease that could be slowed.

 

[DigitalDrifter]

The notion that FND is anything other than rebranded hysteria/conversion disorder is I’m sorry to say untrue. If you actually read their own papers they often admit it outright like in the meta-analysis we discussed a few months ago upon this forum where the search terms they used were all these terms.

https://jnnp.bmj.com/content/83/3/248

One advantage of ‘functional’ may thus be as a simplifying euphemism, allowing neurologists to use the same term to mean one thing to colleagues and another to patients. It may be precisely this ambiguity which has allowed the construct to survive despite the uncertainty and conflicts underpinning its meaning at any point in time.

 

[rvallee]

How many people will die from undiagnosed treatable conditions if following this credo.

How many already have? Thousands for sure. Likely tens if not hundreds of thousands. Accounting for premature deaths, likely millions. Millions have lost many years of their lives, for many most of their lives. The best data we have show that for those who remain ill with ME/CFS, we die 20 years earlier than the rest of the population on average. That could be wrong, but it's unlikely to be so wrong that it's acceptable. We know of far too many in their 20's or even earlier, in some cases whose death was disrespected even further in ghoulish displays of indifference.

The psychosomatic quacks don't care. They completely ignore it. They are behaving exactly like the tobacco industry did when faced with the harm of their product. They get away with it because of disbelief, that if something this big were true, people would act. But the facts are what they are, and people rarely act unless they have to. Just look at masks in health care: "we don't have to, so we don't". In years of reading psychosomatic papers and studies, I never see any substantial discussion of this. It's a completely taboo subject that most never talk about, probably never think about. It's all mild. All beliefs and behavior.

From spoilers about the NIH intramural ME/CFS research paper, one of the conclusions appears to be that there are a lot of missed diagnoses, that a lot of people with ME had other diagnosable conditions that were simply missed because psychosomatic ideology prescribes not to bother to investigate, out of belief that it's patients believing they have a serious illness that makes them behave this way. Or whatever bullshit they happen to believe. And out of foolish beliefs about cost-saving, the likes of not fixing a damaged roof saves on costs.

It makes a complete mockery of the "first do no harm" thing. It also runs afoul of the law in most countries, where basic efforts to properly diagnose are mandated by law. What we are missing is enforcement. Enforcement of the so-called first principle of medicine, which is about as dutifully followed as the prime directive in Star Trek. Enforcement of the basic laws of health care and the so-called right to it. It's not actually a right if it can be denied systematically to this many. Certainly not when there is a specialty devoted to it.

We'll probably only know enough to act once health care has comprehensive records of everything happening. Right now that's just not the case, and there is almost no linkage between different acts. When a MD misses a diagnosis that another MD makes later, it's a completely manual process to get that first one to even know about it. And the odds that they learn anything from it are minuscule, it's just not part of how medicine works. Medical AIs will change that, that's coming soon. I can't wait.

 

[Eleanor]

The notion that FND is anything other than rebranded hysteria/conversion disorder is I’m sorry to say untrue. If you actually read their own papers they often admit it outright like in the meta-analysis we discussed a few months ago on this forum where the search terms they used were all these terms. The only time they distance themselves from these evil/stupid concepts like conversion disorder is when they’re speaking directly to FND patients and trying to get their buy-in.

The neurologist who tried to diagnose my Long Covid cognitive impairment and dysautonomia as FND was entirely open about it. "This is FND: what we used to call conversion disorder." Then he told me to "see a shrink".

Luckily I knew enough by then to laugh it off, but who knows how many other people are being told the same thing.

 

[Sid]

The neurologist who tried to diagnose my Long Covid cognitive impairment and dysautonomia as FND was entirely open about it. "This is FND: what we used to call conversion disorder." Then he told me to "see a shrink".

Luckily I knew enough by then to laugh it off, but who knows how many other people are being told the same thing.

Yes, this is a common clinical situation. "Functional" is understood by everyone in medicine to be a codeword for psychological. However, in my post I was referring to elite FND scammers who talk a good talk about how all that Freudian conversion stuff is superseded and how enlightened they are. It's a small cabal of FND-friendly neurologists who have managed to convince some patients that they're on their side. In actuality, an FND diagnosis on your medical chart is pretty much a death sentence because you'll never be treated seriously by any healthcare provider ever again and should you ever develop another condition that's actually fatal you will very likely end up being dismissed as anxious/hysterical, delaying your diagnosis and experiencing extreme abuse.

 

[Hutan]

People diagnosed as FND can have serious problems that impact their lives. But the honest medical position is that we have no clue why and each person may well have a completely different problem. What we do know a bit about is likelihood of progressive neurological disease - so there are times when one can be reassuring at least about that.

I agree about the variety of conditions dumped into the FND bucket. But we have seen enough published case studies of people who have been given an FND diagnosis and then have gone on to have worsening symptoms and eventually be diagnosed with a progressive neurological diseases to question the capacity of the medical system to always accurately identify progressive conditions. For example, there was the woman with Creutzfeldt-Jakob Disease who was initially diagnosed with FND (with the case study authors continuing to insist that she had an overlay of FND, even after the identification of the CJD, even as her brain disintegrated. I still find that case study one of the most astonishing medical accounts I have come across.)

I don't see why a similar thing couldn't be happening here but on a longer timescale. FND may simply be a structural problem (that we're only now beginning to see) where the function can be abnormal in unusual/non-standard ways: not a fixed defect (a binary of always working vs always broken) but non-deterministic.

A family member had a malformation of the blood vessels on the surface of the brain - as I understand it, an artery not connecting up properly to the capillaries, but instead bypassing those to shunt the high pressure blood into a vein. Such a malformation has all sorts of causes - congenital, physical trauma and disease. The vascular malformation caused some death of brain cells that had been served by the bypassed capillaries and, so, a loss of function, some of which was regained as neural plasticity allowed other parts of the brain to take over that function.

The structural problem also caused swelling where the vein became leaky under the high pressure of the shunted blood supply. The swelling, pressing on the brain and its blood supply, would periodically get worse, typically after some activity increasing blood pressure, and then reduce. That produced a pattern of fluctuating symptoms, including a loss of function in a hand, cognitive issues and delirium.

In my family member's case, the malformation was not diagnosed straight away, and in fact may not have ever been. He was very fortunate that someone took another look and arranged the right sort of scan. To my knowledge, he was never given an FND diagnosis. He is of the age where strokes are expected, and that is the diagnosis he was given. If he was a young girl with the same problem, maybe the outcome would have been different.

This experience underlined to me the ridiculousness of suggesting that a fluctuating pattern of symptoms is evidence of conversion disorder. Stress, whether it be physical or emotional stress, does have impacts on the body, and those impacts, such as an increase in blood pressure, absolutely can exacerbate neurological disease.

(sorry for a few edits for clarity)

 

[Ash]

I agree about the variety of conditions dumped into the FND bucket. But we have seen enough published case studies of people who have been given an FND diagnosis and then have gone on to have worsening symptoms and eventually be diagnosed with a progressive neurological diseases to question the capacity of the medical system to always accurately identify progressive conditions. For example, there was the woman with Creutzfeldt-Jakob Disease who was initially diagnosed with FND (with the case study authors continuing to insist that she had an overlay of FND, even after the identification of the CJD, even as her brain disintegrated. I still find that case study one of the most astonishing medical accounts I have come across.)


A family member had a malformation of the blood vessels on the surface of the brain - as I understand it, an artery not connecting up properly to the capillaries, but instead bypassing those to shunt the high pressure blood into a vein. Such a malformation has all sorts of causes - congenital, physical trauma and disease. The vascular malformation caused some death of brain cells that had been served by the bypassed capillaries and, so, a loss of function, some of which was regained as neural plasticity allowed other parts of the brain to take over that function.

The structural problem also caused swelling where the vein became leaky under the high pressure of the shunted blood supply. The swelling, pressing on the brain and its blood supply, would periodically get worse, typically after some activity increasing blood pressure, and then reduce. That produced a pattern of fluctuating symptoms, including a loss of function in a hand, cognitive issues and delirium.

In my family member's case, the malformation was not diagnosed straight away, and in fact may not have ever been. He was very fortunate that someone took another look and arranged the right sort of scan. To my knowledge, he was never given an FND diagnosis. He is of the age where strokes are expected, and that is the diagnosis he was given. If he was a young girl with the same problem, maybe the outcome would have been different.

This experience underlined to me the ridiculousness of suggesting that a fluctuating pattern of symptoms is evidence of conversion disorder. Stress, whether it be physical or emotional stress, does have impacts on the body, and those impacts, such as an increase in blood pressure, absolutely can exacerbate neurological disease.

(sorry for a few edits for clarity)

CJD with FND overlay?
Too awful surely?
Perhaps the most sadistic application I’ve ever heard.
I wonder who had to tell them?
Dr you were wrong, I know it’s difficult. But there are worse things to deal with, you could be dying from Creutzfeldt-Jakob Disease.

 

[Sid]

CJD with FND overlay?
Too awful surely?
Perhaps the most sadistic application I’ve ever heard.
I wonder who had to tell them?
Dr you were wrong, I know it’s difficult. But there are worse things to deal with, you could be dying from Creutzfeldt-Jakob Disease.

It's one of the most insane threads we ever had here, the sheer insanity of that paper and its conclusions. This person literally spent their last days/weeks/months on earth being told they have FND.

 

[Ash]

It's one of the most insane threads we ever had here, the sheer insanity of that paper and its conclusions. This person literally spent their last days/weeks/months on earth being told they have FND.

After I’d written that I remembered the thread it was just so awful I’d blanked it. Really ghastly behaviour.

That’s actually a great example one of many many pointers that the proponents of FND aren’t reliable narrators when it comes to their patients.

 

[Sid]

Paper published in a top psych journal in 2014 (not 1950), with 12 participants and far-reaching pro-Freud conclusions, point-blank admitting in the first sentence that hysteria is a synonym:

Conversion disorder (CD), also known as hysteria, is by no means a historical entity, accounting for 16% of neurology outpatients. 1

https://jamanetwork.com/journals/jamapsychiatry/fullarticle/1780023

Reference 1 is Stone's FND prevalence study.

So, for any FND patients reading this forum, this is what they ACTUALLY think of you.

 

[Hutan]

But we have seen enough published case studies of people who have been given an FND diagnosis and then have gone on to have worsening symptoms and eventually be diagnosed with a progressive neurological diseases to question the capacity of the medical system to always accurately identify progressive conditions.

Revising a diagnosis of functional neurological disorder—a case report, 2020, Berry and Weithoff
The text actually used the word 'refine', as in the 'FND diagnosis was refined to progressive supranuclear palsy'.

Functional neurological symptoms as initial presentation of Creutzfeldt-Jakob disease: case series 2022 Gómez-Mayordomo et al
3 cases discussed. Also talks about FND in a whole range of neurodegenerative conditions

One of the first studies on this clinical combination reported the prevalence of “hysteria” in “organic” brain disease to be 67% [
[9]], while later studies point to rates of 12%–20% [[10],[11]]. The reported data specifically addressing FND comorbidity in movement disorders is sparse. Onofrj et al. studied a large cohort (N = 942) of patients with Parkinson's Disease (PD), Lewy Body Dementia (LBD), Alzheimer's Disease, Multisystem Atrophy, Progressive Supranuclear Palsy and Frontotemporal Dementia, finding that FND were most prevalent in LBD (12%), followed by PD (7.0%) and other parkinsonisms (0%–3%)

A recent systematic review, including these two studies along with seven others, reports rates of somatization symptoms (including motor and non-motor symptoms) in PD that range from 7% to 66.7%

And this is the paper that is surely the pinnacle of 'seeing what you want to see'

Another reference in this 2022 paper that I think is worthy of comment:
A Case of Sporadic Creutzfeldt-Jakob Disease Presenting as Conversion Disorder, 2017

It remains unclear whether the patient’s functional symptoms were an early manifestation of sCJD or a cooccurring phenomenon. Functional symptoms have been found in the initial stages of many neurological disorders

This case challenges our perception of conversion disorder as an entirely psychological phenomenon and neurological disease as entirely biological [5]. If disease can exist in an immaterial, “functional” realm, how then can it influence a brain made of matter and mass and produce bodily symptoms? Perhaps the connections are subtler than thought.

 

[dave30th]

It would be similar to the "normal appearing white matter" (NAWM) in MS, which absolutely isn't at autopsy, now able to be shown in vivo with advanced MRI techniques. This gets diagnosed as "MS with FND overlay".

Can you explain this? Not quite sure what you mean.

 

[dave30th]

I still find that case study one of the most astonishing medical accounts I have come across

I was pretty shocked that they considered the FND Dx to be correct in that case series. They did say that it should be considered a transient or place-holder Dx pending further developments, however--which is of course not what the FND people say, because they treat it as a final diagnosis, not a provisional one.

 

[ToneAl]

Can you explain this? Not quite sure what you mean.

There was a paper where a new type of MRI can now detect the smallest differences in white matter that was previously not seen.
@SNT Gatchaman posted the article about 7t MRI.

 

[Sean]

This case challenges our perception of conversion disorder as an entirely psychological phenomenon and neurological disease as entirely biological [5].​

No, it exposed the FND diagnosis for the cruel sham it is.

If disease can exist in an immaterial, “functional” realm, how then can it influence a brain made of matter and mass and produce bodily symptoms? Perhaps the connections are subtler than thought.​

'If'

Maybe, just maybe, those connections simply don't exist, because the functional component doesn't exist outside of the fevered imaginations of those claiming it does.

 

[dave30th]

This case challenges our perception of conversion disorder as an entirely psychological phenomenon and neurological disease as entirely biological [5].

is this a quote from the software/hardware paper or some other paper?