Functional Neurological Disorder (FND) - articles, social media and discussion

dave30th said:
Jon Stone has just published another essay in which he questions whether CODES had the right primary outcome after all. Qualify of life measures are "arguably" more important to patients. Right. According to that theory, patients are more interested in that their seizures are less bothersome to them more than they would prefer not to have seizures at all.
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So he wants to exhaust and trick people into accepting living with debilitating symptoms without expensive health-stabilising treatment?
 
ToneAl said:
This brings up a couple of point to consider
1 if tech in hospitals arent up to date and diagnosis is based upon them how many misdiagnosis is there.
2 Is the current tech enough to diagnosis every condition
3 Would new tech be able to diagnose missed conditions from todays tech
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1. Unknown. > zero.
2. No. (But not all diagnoses require high tech confirmation, if the symptoms, signs and pathology are well understood.)
3. Yes, very likely. This is a good question, which I think can be addressed further in two parts.

It may not be necessary to have the newer, more advanced technology available generally (and practically, the current fleet will be in service for 10+ years). In the case of this, this new technology gives an answer as to why MS symptoms have not matched routine clinical imaging up til now. Normal-appearing white matter (NAWM) is now demonstrated to be abnormal at 7T. This is something that has been known from post-mortem studies*, but now we can show it in vivo, when that knowledge is still useful to the patient. This paper demonstrates the relationship between disability levels and previously invisible brain pathology. So doctors don't need to upgrade their MRI machines, they simply need to upgrade their thinking.

From a technical point of view, though I'm far from expert in MRI physics, in simple terms the benefit of higher field strengths results from reducing the required trade-off between spatial resolution and time of acquisition. When we made the jump from 1.5T to 3T, 15+ years ago, we could choose to either get much better detail images in the same time, or the old, lesser quality images in a fraction of the time (occasionally useful for a "moving target" like a child). Now it wouldn't be practical as a routine, but it might be possible to increase the spatial resolution for this type of study on the current 3T magnets: if you accept, and the patient can tolerate, lying motionless in the scanner for say 30 minutes without a break for one sequence. (I'm guessing here, I don't know that this would actually be workable).

However, I don't think it's necessary. I think the theoretical knowledge should be enough.

This study alone illuminates and pushes back on the idea of MS+FND, or "MS with functional overlay". Eg from The borderland of multiple sclerosis and functional neurological disorder: A call for clinical research and vigilance (2022, European Journal of Neurology) —

It is well known that FNDs can coexist with other neurological conditions with similar symptoms: patients with non-epileptic seizures (also called dissociative seizure or psychogenic non-epileptic seizure) often also have a coexisting epilepsy. Functional parkinsonism—characterized by atypical variable and distractable tremor, slowness of movement without decrement typical of bradykinesia and increased tonus with Gegenhalten rather than cogwheel rigidity—has been found to be associated with Parkinson's disease and even to precede its occurrence. Similarly, cases of co-existing MS and FND have been reported. An older (1988) case series on 366 MS patients reported 1% of hysteric neuroses and a more recent (2011) study found that 13% of patients with MS (32/252) had a symptom “somewhat or not at all explained by MS”, suggesting coexisting FND.
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See also Functional neurological disorder and multiple sclerosis: a systematic review of misdiagnosis and clinical overlap (2021, Journal of Neurology)

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*Neuroinflammation in the normal-appearing white matter NAWM of the multiple sclerosis brain causes abnormalities at the nodes of Ranvier (2020, PLOS Biology)
 
David Tuller said:
The journal responded within days to let us know that the authors had agreed to a correction
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This part honestly baffles me. There must have been outside pressure on them. Especially as this misuse of fake numbers has been going on for so long, it's laughable that they'd just decided to the right thing. It never works like that in BPS land.
 
dave30th said:
Jon Stone has just published another essay in which he questions whether CODES had the right primary outcome after all. Qualify of life measures are "arguably" more important to patients. Right. According to that theory, patients are more interested in that their seizures are less bothersome to them more than they would prefer not to have seizures at all.
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I actually believe that this makes sense to him. It doesn't make sense. Hence FUBAR.

And by sheer coincidence, this subjective reporting from biased questionnaires is a lot easier, actually trivial, to manipulate and distort than an objective count. By sheer coincidence, Shirley.
 
rvallee said:
This part honestly baffles me. There must have been outside pressure on them.
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I don't assume it came from the authors--my thought is that the journal saw the evidence and said, this needs to be addressed. The journal, NeuroImage: Clinical, does not seem to have the well-known FND experts on its editorial boards. That was one reason it seemed like a good place to start.
 
Trish said:
@dave30th will you be writing that Twitter thread up on virology blog? I find long Twitter threads hard to follow, and now lots of people won't have access if not signed up to Twitter.
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can someone figure out how to make the thread into a text block without me having to cut-and-paste each tweet? I don't know how to do this
 
SNT Gatchaman said:
1. Unknown. > zero.
2. No. (But not all diagnoses require high tech confirmation, if the symptoms, signs and pathology are well understood.)
3. Yes, very likely. This is a good question, which I think can be addressed further in two parts.

It may not be necessary to have the newer, more advanced technology available generally (and practically, the current fleet will be in service for 10+ years). In the case of this, this new technology gives an answer as to why MS symptoms have not matched routine clinical imaging up til now. Normal-appearing white matter (NAWM) is now demonstrated to be abnormal at 7T. This is something that has been known from post-mortem studies*, but now we can show it in vivo, when that knowledge is still useful to the patient. This paper demonstrates the relationship between disability levels and previously invisible brain pathology. So doctors don't need to upgrade their MRI machines, they simply need to upgrade their thinking.

From a technical point of view, though I'm far from expert in MRI physics, in simple terms the benefit of higher field strengths results from reducing the required trade-off between spatial resolution and time of acquisition. When we made the jump from 1.5T to 3T, 15+ years ago, we could choose to either get much better detail images in the same time, or the old, lesser quality images in a fraction of the time (occasionally useful for a "moving target" like a child). Now it wouldn't be practical as a routine, but it might be possible to increase the spatial resolution for this type of study on the current 3T magnets: if you accept, and the patient can tolerate, lying motionless in the scanner for say 30 minutes without a break for one sequence. (I'm guessing here, I don't know that this would actually be workable).

However, I don't think it's necessary. I think the theoretical knowledge should be enough.

This study alone illuminates and pushes back on the idea of MS+FND, or "MS with functional overlay". Eg from The borderland of multiple sclerosis and functional neurological disorder: A call for clinical research and vigilance (2022, European Journal of Neurology) —



See also Functional neurological disorder and multiple sclerosis: a systematic review of misdiagnosis and clinical overlap (2021, Journal of Neurology)

---
*Neuroinflammation in the normal-appearing white matter NAWM of the multiple sclerosis brain causes abnormalities at the nodes of Ranvier (2020, PLOS Biology)
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Is there also different types of mri such as T1 T2 and Flair.
I have read that some conditions require different types or othereise they miss it.

Alo the skill of the radiologist is also important.

Functional overlay is a bad term when higher res scsns show more damage
 
Trial By Error: A Letter to Psychological Medicine about Inflated FND Rate Claims

"The journal NeuroImage: Clinical, an Elsevier title, recently agreed to correct the false statement that a 2010 study found functional neurological disorder to be the second-most-common diagnosis at outpatient neurology clinics. To the journal’s credit, it responded positively within days of receiving a letter about the matter from a group of us, although the correction has not yet been published.

Last week, I sent a letter to the lead and senior authors of that paper, Dr David Perez and Professor Selma Aybek, alerting them that we had identified at least nine other papers that included the same mistake and for which one or the other of them was the lead or senior author. I suggested that it would be helpful if they themselves informed the journals of the need for such corrections. Not surprisingly, I did not hear back from either of them.

Earlier today, I sent a letter from our group to the journal Psychological Medicine about a 2021 paper for which Dr Perez, a neuropsychiatrist at Massachusetts General Hospital in Boston, was the senior and corresponding author. This journal, of course published the arguably fraudulent PACE trial recovery paper in 2013. It has essentially served as a house organ for members of the CBT/GET ideological brigades. It will be interesting to see how it handles this request."

https://virology.ws/2023/07/03/tria...ical-medicine-about-inflated-fnd-rate-claims/
 
Jon Stone has had an editorial published titled "Functional neurological disorder: Past, present and future", paywalled, https://www.sciencedirect.com/science/article/abs/pii/S0013700623000908, with no abstract available.

What is shown is
"Acknowledgments

This special FND issue of L'Encéphale has been co-ordinated by Guilhem Carle-Toulemonde, Stephane Mouchabac, Beatrice Garcin and Coraline Hingray representing the the Neuropsychiatry group of the L’Association Française de Psychiatrie Biologique et de Neuropsychopharmacologie (AFPBN)."
 
Andy said:
Jon Stone has had an editorial published
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It also mentions his honoraria from UpToDate, where he wrote that the Scottish Neurological Symptom Study showed a prevalence of "conversion disorder" at 6% of outpatient neurology clinic visits, not 16%. He also mentions the null findings of the CBT study for non-epileptic seizures and uses that to suggest that the primary outcome--reduction of seizure frequency--is less important to patients than coming to terms with having seizures.
 
dave30th said:
He also mentions the null findings of the CBT study for non-epileptic seizures and uses that to suggest that the primary outcome--reduction of seizure frequency--is less important to patients than coming to terms with having seizures.
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The problem with this is that it’s obviously moving the goalposts. CBT for nonepileptic seizures is billed as curative, not supportive, just like CBT for ME/CFS. When CODES showed that CBT doesn’t work, the redefined the goal of treatment as supportive/palliative. Ok so you still have convulsions and you’re still disabled but you’re less bothered by that. This is NOT how CBT is sold to functional pts.
 
SNT Gatchaman said:
This study alone illuminates and pushes back on the idea of MS+FND, or "MS with functional overlay".
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I hope so, but something tells me the researchers will just claim FND has the biological underpinnings viewed with imaging, but their reverse engineering clinical evidence shows it responds to CBT. Suggesting illness is driven more by mental problems than a result of any abnormalities found. At one point, it was claimed that FND had no structural brain changes, but in some recent papers, it's now included, again moving the goalpost so they can always be right.
 
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It looks like the authors are tying themselves up in knots as etiologies move from essentially magic to a situation where the pathology is understood. There are sequences of re-positioning that don't really make for coherence.

Thread for discussion of that paper here.
 
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SNT Gatchaman said:
See also thread Extensive Brain Pathologic Alterations Detected with 7.0-T MR Spectroscopic Imaging Associated with Disability in Multiple Sclerosis (2022, Radiology)
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Here is another post elsewhere it fits very well with this article

Medical gaslighting in the multiple sclerosis community where an MRI might not show any recent inflammatory results but the patient is becoming worse. . Dr. Gavin Giovannini explains in his blog:

https://gavingiovannoni.substack.com/p/medical-gaslighting#details
 
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