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

[Sid]

It is important to remember the emotion attached to diagnostic labels

And emotion attached to various (non-evidence based and probably false) causal models for symptoms and gurus promoting them. You see this in our community too when you push back on some con artist MD or when you point out that the symptoms are not caused by bendy joints, leaky spine, enterovirus from 1979, chronic Lyme and any number of other scams. An attack on the causal explanation for symptoms is perceived as a personal attack on the person’s illness itself, or a personal attack on their identify which is wrapped up in these incorrect theories.

 

[NelliePledge]

As people who have ME/CFS are being told no you have FND or CFS is under the umbrella of FND we have every right to take an interest as it affects our community.

 

[Sean]

[rant on]

We are criticising the FND concept and the people who impose it, not those who have foisted upon them.

I have every sympathy for those patients. Nobody is saying they are not having serious and very real health problems. I dare I suggest that we in the ME world are among the very few who do actually have any insight into what they are dealing with.

I have absolutely no sympathy or respect at all for the medical professionals who are failing those patients so obviously, dishonestly, and cruelly, and I will not be shutting up about their appalling incompetence and ethics-free behaviour.

Furthermore, we ME patients have every damn right to criticise, seeing as the FND 'professionals' are now explicitly trying to kidnap the ME diagnosis and drag it into the FND camp.

Time certain FND patients understand who their real enemy is. Hint: It isn't us.

Believe it or not, FND patients, we are on your side. Indeed, a lot of the hard work you need to help save yourselves from the FND scam has been, and continues to be, done by us, typically at very high personal cost I might add. A particularly shitty part of that cost being having to wear the ingratitude and hostility of people with FND who have no idea of the real story and the brutal history behind the whole damn psychosomatic scam over the last fifty years, and just how broken medicine is over this issue.

I have yet to see a solid critique from any of you demonstrating any real understanding of the science and broader history of all this. You just regurgitate the tired worn-out hollow cliched lies and smears your FND gurus have been assiduously filling your heads with since day one. I get your desperation, but you are making an extremely serious error.

Your real enemy is the people labelling you with FND. I very strongly advise you to turn your critiques on them and their work and methods, because shafting us will not save you.

You can join with us and benefit from our experience and knowledge, and together we will be stronger. Or you can side with the FND scammers and go down with them. Your choice. But if you choose the latter do not make the mistake of thinking that we are going to sit meekly back and allow you to destroy the decades of very hard painful slog it has taken us to get even this far, in the delusion it will save you, because you will be very seriously mistaken on both counts.

I didn't come this far, and survive forty years of this brutal nightmare, and a destroyed life, just to have it destroyed all over again at the last lap because of this bogus FND crap. It is one of the greatest and cruellest scams in modern medicine.

If you cannot or will not see that, we cannot help you, and you are on your own. Good luck. But don't blame us for it.

[rant off]

 

[DigitalDrifter]

The findings demonstrate that structural lesions can lead to FND symptoms, possibly explained through changes in relevant mechanistic functional networks.

For me to be convinced they would have to do before and after scans, before talking treatment and after talking treatment and see if there is an objective difference.

 

[dave30th]

Weird as well that they are celebrating finding abnormalities when previously the lack of abnormalities was claimed to be proof of the validity of FND.

yes but now they're treating the abnormalities as side issues--or not as the cause but as a distal cause--the lesion causes the disruption of the nextworks that then cause FND--rather than that the lesions are directly responsible somehow. At least, I think that's the argument.

 

[rvallee]

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.

What in the hell he is even saying here?

Dualists - put this in your pipe & smoke it

Case series of stroke mimics of functional mimics of neurological disease

=pseudo pseudo neurological disorder, in old parlance, like pseudo pseudo hypopararthyroidism

This is a complete word salad.

Although yeah it's pretty impressive how fanatical this ideology is that when the leading voices see evidence debunking the model they have been pushing for years, it actually vindicates them. Amazing.

 

[rvallee]

My problem with FND is when doctors and institutions claim that there is no physical or biological cause. The Mayo clinic's website states "Basically, parts of the brain that control the functioning of your muscles and senses may be involved, even though no disease or abnormality exists"

Given that they are making this claim the burden of proof is on them to provide evidence that this is the case. However, the only evidence they have is that they can't find any abnormalities. Given they haven't looked very hard and do sometimes find abnormalities when they look, the claim that no disease exists seems pretty ridiculous. If they had just said "we have this condition that causes these symptoms and we don't know the cause" I don't think anyone would have a problem with it. But instead they claim they know the answer, and that answer is that there is no real abnormalities at all. I think its fair to say the field of medicine would be much better off if they admitted we don't what the cause is and looked for answers.

It's fascinating to see how this plays out in pleasing some patients, when they don't know that it's just the new label for the old conversion disorder.

I recently saw a reddit post from someone diagnosed with FND instead of Long Covid, talking about the "tests" kind of like what's described in this other thread Non-invasive neuromodulation of the right temporoparietal junction using theta-burst stimulation in [FND] 2024 Bühler et al. It was mainly about how concentrating on doing hand movements lessened tremors in their hands, and things like the Hoover sign. They were quite happy that it sounds neurological and legit, since of course part of FND is insisting that they believe that the symptoms are "real", where real means something completely different to us. The tests are not valid but they look like neurological tests and are done with a serious face so it looks legit if you don't know any better.

And a thread today about Mayo's LC clinic and how they diagnosed them with central sensitization, explaining how it's their model of the nervous system being more sensitive to symptoms, because it's sensitized. It's a circular model, but it's explained in a way that pretends that it's legitimate and neurological, the patient doesn't know that the theoretical basis is still ye olde conversion disorder. Everyone is failed, including the clinicians and researchers, but only the patients know that so it keeps going. Sometimes, apparently. Hey, some people are find with an astrological explanation. And a homeopathic explanation. Or a psychic narrative.

The model has slightly moved away from purely psychological to using either non-organic or non-structural, which is just a cheap way of saying psychological without admitting it to the patient, but as they find evidence they not only retain all the baggage, they actually use the new evidence to claim that all the old baggage was actually correct. So it's a new way of doing pseudoscience, where better science actually strengthens the old beliefs and traditions. It's really impressive.

Having never had to provide any evidence for their models, having been able to simply do away with explaining things in a narrative way, there is no way forward. Until the mythical baggage of the old conversion disorder is made obsolete, patients will never receive meaningful help. Because that's really the crux here. In the FND model, patients are sometimes getting help. It's just not meaningful, makes no difference. And the old claims, like Knoop and his recent letter explaining that his model of unhelpful illness beliefs being helped by CBT, non-meaningfully, doesn't mean psychological just shows how the lies will never stop. They can't not lie, the entire ideology is a lie and whenever they themselves debunk it, instead of admitting it they simply say that it actually validates the lie.

And there's also the post that Nicholson replies to above, which ends with "the brain is very complicated". As if we haven't been telling them so, that they don't know nearly enough yet to push their psychosomatic narratives, but they actually use a fact that weakens their ideology as evidence that it strengthens it. It's really incredible the lies people can tell themselves, especially in a group that exists to support them.

 

[rvallee]

It would not be fair to say that ME/CFS patients are obsessively focusing on some random condition they don’t even have. As everyone knows, FND proponents in the academia have been trying to subsume ME/CFS, FM and other “functional somatic syndromes” into their thing forever.

It's hard to imagine that this Kim character doesn't know that. Maybe they don't follow any of the research, most of it actually names ME/CFS as falling in their umbrella, just as most of it plainly says that FND is simply an updated label for conversion disorder, but that would just make what this person says all the less relevant.

 

[Jonathan Edwards]

It's fascinating to see how this plays out in pleasing some patients, when they don't know that it's just the new label for the old conversion disorder.

Yes, one can sympathise but I am pretty sure this is not being served up to the public in good faith.

It seems that people with FND follow these threads. If they read this I would like them to know that I am not a patient sniping at someone else's disease. I am a professor of medicine trained in clinical neurology with no axes to grind because I never got heavily involved in this condition and am retired. I am disappointed that my neurologist colleagues think that the FND diagnosis is a neat way to keep patients happy. It is either a deliberate screen for those who think there is nothing wrong or it is a sales pitch for those wanting research money who maybe have persuaded themselves they have serious theories.

They don't.

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.

 

[dave30th]

People diagnosed as FND can have serious problems that impact their lives.

This is of course true. Unfortunately, many FND patients view legitimate criticism of the FND construct--such as questioning their prevalence claims--as attacking them and dismissing their serious medical complaints, when it is really challenging the "experts" making the FND claims. I understand why the patients would feel that way when having a name for their illness and compassion from apparently sympathetic clinicians has given them comfort. That comfort of course is not evidence for FND. But I try to keep it in mind when I see the personal reactions that FND patients have to the concerns being raised.

 

[JemPD]

I'm not on Twitter, so I can't reply directly to Kim H

Hi Kim H, if you're reading this, I'm sorry you feel your condition is ridiculed. That's certainly not the intention of the discussions of FND on the forum. We understand all too well what it's like to have one's serious and disabling condition ridiculed and none of us are ridiculing fellow patients here.

I tend to stay out of the FND discussions because I don't feel I know enough about FND to contribute helpfully. But my understanding is that the big concern here is that people with FND may be victims of similar problems to people with ME/CFS in that FND is just the latest name of what used to be called conversion disorder, itself formerly called hysteria.

In other words that people with FND are not believed by many medics to have real physical disorders but rather psychosomatic disorders. The fellow feeling here is that ME/CFS suffer from the same psychosomatic misattribution, with consequent dismissal of our serious health condition.

This.

I am so sad to think that people who have been given an FND diagnosis think/feel we are ridiculing or challenging their health, the seriousness of their condition or their suffering. It is in fact quite the reverse, and if anyone has been hurt or offended by any of my own posts, i am sincerely sorry.

 

[JemPD]

In addition

As people who have ME/CFS are being told no you have FND or CFS is under the umbrella of FND we have every right to take an interest as it affects our community.

Precisely...
FND specialists keep insisting that ME/CFS is FND, or at least a 'functional' condition. So the idea that we are spending time discussing a condition that PwME 'dont even have' isn't at all accurate, because the proponents of FND, and of research such as the study this thread is based on, say that we most certainly do.

Therefore critique of the FND research, the ideology that underpins it, and the treatment protocols coming out of it... is relevant to us.

Edited: for sense, & to remove some stuff that i felt was less relevant/confused the point.

 

[alktipping]

This is of course true. Unfortunately, many FND patients view legitimate criticism of the FND construct--such as questioning their prevalence claims--as attacking them and dismissing their serious medical complaints, when it is really challenging the "experts" making the FND claims. I understand why the patients would feel that way when having a name for their illness and compassion from apparently sympathetic clinicians has given them comfort. That comfort of course is not evidence for FND. But I try to keep it in mind when I see the personal reactions that FND patients have to the concerns being raised.

A comforting lie is still a lie and in this context seriously harms the patients . So who exactly is benefitting from this lie that prevents proper investigation into so many different illnesses.

 

[bobbler]

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.

How are these manifestos and the twisting themselves in knots beyond logic not landing these people in treatment?

the world is just so upside down in certain parts.

 

[bobbler]

In additionPrecisely...
FND specialists keep insisting that ME/CFS is FND, or at least a 'functional' condition. So the idea that we are spending time discussing a condition that PwME 'dont even have' isn't at all accurate, because the proponents of FND, and of research such as the study this thread is based on, say that we most certainly do.

Therefore critique of the FND research, the ideology that underpins it, and the treatment protocols coming out of it... is relevant to us.

Edited: for sense, & to remove some stuff that i felt was less relevant/confused the point.

It’s actually just code for a bigotry that exists in the mind of certain individuals alone. Then the fake stories and twisted like this get invented. So yes in their little warped concept that applies to ‘how certain demographics think’ it’s all the same. Because the medicine and terms is just fake to pretend it’s ok to still weaponise medicine to claim hysterical woman just cos you don’t like certain people or because it works for you as a con.

this is clearly trying to play on the idea that if you make something so untrue, twisted and illogical but say it with enough force then 90% of people will give up reading it - BUT assume they did that because it made no sense due to being them not understanding rather than it not making sense or adding up at all.

things have got very obscure with this FND stuff and the dualism darvo because it literally is standing naked in the rain daring people to say something.

 

[bobbler]

Attacking the forum inaccurately, unfortunately. If anything, it's the poor standard of FND research that we mock, not the patients. And we wouldn't have interest in FND research if FND researchers weren't attempting to drag ME/CFS into FND.

One thing that confuses me (and maybe with this lady and her perspective as an example it might help unpick) is that from what I see those with FND get diagnosed then dumped off into treatments that don’t really seem to be effective (similar to the CFS flase beliefs bucket being used to dump people out of being investigated and tested as if their illness was a ‘flase belief’ whilst dr was told to lie to them and pretend ‘yes we know it’s very serious’ to trick everyone).

Am I incorrect?

Do some of those with FND find these treatments effective or along the right lines?

 

[bobbler]

[rant on]

We are criticising the FND concept and the people who impose it, not those who have foisted upon them.

I have every sympathy for those patients. Nobody is saying they are not having serious and very real health problems. I dare I suggest that we in the ME world are among the very few who do actually have any insight into what they are dealing with.

I have absolutely no sympathy or respect at all for the medical professionals who are failing those patients so obviously, dishonestly, and cruelly, and I will not be shutting up about their appalling incompetence and ethics-free behaviour.

Furthermore, we ME patients have every damn right to criticise, seeing as the FND 'professionals' are now explicitly trying to kidnap the ME diagnosis and drag it into the FND camp.

Time certain FND patients understand who their real enemy is. Hint: It isn't us.

Believe it or not, FND patients, we are on your side. Indeed, a lot of the hard work you need to help save yourselves from the FND scam has been, and continues to be, done by us, typically at very high personal cost I might add. A particularly shitty part of that cost being having to wear the ingratitude and hostility of people with FND who have no idea of the real story and the brutal history behind the whole damn psychosomatic scam over the last fifty years, and just how broken medicine is over this issue.

I have yet to see a solid critique from any of you demonstrating any real understanding of the science and broader history of all this. You just regurgitate the tired worn-out hollow cliched lies and smears your FND gurus have been assiduously filling your heads with since day one. I get your desperation, but you are making an extremely serious error.

Your real enemy is the people labelling you with FND. I very strongly advise you to turn your critiques on them and their work and methods, because shafting us will not save you.

You can join with us and benefit from our experience and knowledge, and together we will be stronger. Or you can side with the FND scammers and go down with them. Your choice. But if you choose the latter do not make the mistake of thinking that we are going to sit meekly back and allow you to destroy the decades of very hard painful slog it has taken us to get even this far, in the delusion it will save you, because you will be very seriously mistaken on both counts.

I didn't come this far, and survive forty years of this brutal nightmare, and a destroyed life, just to have it destroyed all over again at the last lap because of this bogus FND crap. It is one of the greatest and cruellest scams in modern medicine.

If you cannot or will not see that, we cannot help you, and you are on your own. Good luck. But don't blame us for it.

[rant off]

let us not forget the horrific journal papers we’ve recently seen suggesting that those with CJD or Parkinson's should be diagnosed with this - often using the term ‘is essential’

and reading that instead of them perhaps in these papers being diagnosed with CJD at a point where they could put affairs in order and at least plan goodbyes they were thrust out if the system to not be continually checked. And the ‘therapy’ they received not being that in line with what you’d give if in those last year or so of such a condition

so yes it as a ‘bucket’ is something that all too many conditions need science to be overlooking and checking it isn’t a free for all for someone with a dodgy ambition and manifesto. And asking for things to be bettered and tightened up isn’t mocking indeed, this stuff should only be in the right hands if people determined to do things right and not be used etc

 

[bobbler]

For me to be convinced they would have to do before and after scans, before talking treatment and after talking treatment and see if there is an objective difference.

they’d have to be long term differences for me

this lot have thrived by being able to play eliciting short term phenomena thru biased design, coercion and being allowed to utilise effects psychology should be excluding (like drug trials do with placebo arm being subtracted) and no one checking what they see on the screen correlated to what they claim

 

[SNT Gatchaman]

Case series of stroke mimics of functional mimics of neurological disease

=pseudo pseudo neurological disorder, in old parlance, like pseudo pseudo hypopararthyroidism

So this reads as "FND is a mimic of stroke" and there are also now conditions that mimic FND... which was mimicking a stroke. I need to read the paper through properly, but this might suggest that there can be a prodromal state where brain tissue is impaired and "acting up" before fully dying off with regional cessation of arterial inflow.

Typically in strokes there is a core of brain tissue that's essentially toast and won't recover. There is also a penumbra, surrounding the core, that is impaired but getting just enough supply to remain viable as long as the blood supply is restored within a decent timeframe. This is the aim of advanced stroke care, to save the salvageable neurons and preserve patient function, by getting the patient to eg endovascular clot retrieval within 6 hours or tPA earlier. No-one is (or should be) describing this as "acute stroke with FND overlay".

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.

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".

---
BTW — The hypoparathyroid conditions mentioned are all structural: either at the gross anatomical level, eg gland removed at surgery; or gene level. Pseudo-hypoPTH has peripheral resistance to PTH, so PTH levels go up to compensate (like insulin in T2DM). Pseudo-pseudo-hypoPTH occurs in the children of those with pseudo-hypoPTH (type 1A) who display some of the same associated clinical features like reduced growth but don't have the resistance to PTH and so have normal Ca and PTH levels. This occurs eg if they get a good maternal (GNAS) gene that works in the kidneys. The genetics is probably more complicated than that, but that's the basic idea.

 

[Sid]

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.