Neuroimaging in Functional Neurological Disorder: State of the Field and Research Agenda, 2021, Perez, Carson, Edwards, Hallet, Stone et al

LJord said:
David Tuller included a link to an article by a woman who was profoundly grateful for her FND diagnosis. It is long and in depth. She states that the largest FND clinic in the USA is in Boston, MA. Suddenly my experiences after moving to Boston, MA are making sense. They are training Neurologists here and Mass General is considered a leader in all kinds of things. And so a young woman I met who was diagnosed with FND when she was having a migraine headache. My experiences trying to get medical care especially after being tagged with the scarlet F. I would lay odds if you could get a number for diagnosed cases here in Boston it would be higher than other parts of the country. This while ME/CFS specialists are closing their waiting lists and not taking new patients.
Click to expand...

That's sad and shocking re migraine being diagnosed as FND.

The underlying processes of migraine are understood now, and can be treaed with monoclonal antibody therapy.

For neurologists to not know about this revolution in treatment for migraine is pretty gobsmacking.

Something has gone well wrong with leadership in medical training. It's like science and the scientific process has been forgotten :banghead:
 
Response to the Letter Concerning the Publication: Neuroimaging in Functional Neurological Disorder: State of the Field and Research Agenda. Perez DL et al. Neuroimage Clin. 2021;30:102623
David L. Perez, Timothy R. Nicholson, Ali A. Asadi-Pooya, Matthew Butler, Alan J. Carson, Anthony S. David, Quinton Deeley, Ibai Diez, Mark J. Edwards, Alberto J. Espay, Jeannette M. Gelauff, Johannes Jungilligens, Mark Hallett, Richard A.A. Kanaan, Marina Tijssen, Kasia Kozlowska, W. Curt. LaFrance, Ramesh S. Marapin, Carine W. Maurer, Antje A.T.S. Reinders, Petr Sojka, Jeffrey P. Staab, Jon Stone, Jerzy P. Szaflarski, Selma Aybek

No abstract.

Link | PDF (NeuroImage: Clinical)


(At this time I can't see the letter by @dave30th and colleagues itself.)
 
Last edited:
SNT Gatchaman said:
(At this time I can't see the letter by @dave30th and colleagues itself.)
Click to expand...

The response is about what I expected. But yes, interestingly, so far the letter itself hasn't been published. Moreover, the letter is mentioned in the first sentence of their response but not included in the list of citations at the end! I've written the journal editor requesting an explanation for both. I assume the letter will be published shortly as well. The response is basically coming up with lots of silly excuses for why they didn't need to tell the truth about the actual prevalence rate that was found in the study they cited.
 
So...the production side screwed up and our letter is reportedly being published in a couple of days. However, the editor declined to add the citation for our letter among the ones listed at the end. He said the review of the response is over, and it will be understood from the context that "Tuller et al (2024)" is the letter appearing with the response. The refusal to fix the omission comes across to me as absurd, but in practical terms I don't know if it's worth it for me to make a fuss over that.
 
Sounds like the old excuse "the print plates have already been produced and aligned on the press so it's too late" except there is no such actual blocker and they just can't bother doing their job. Or maybe their dog ate, uh, their keyboard? It's really a lot harder these days to have legitimate excuses when a fix can be done in minutes.

In my profession that's the kind of people who remain in junior positions their whole career. Or move to low management, where they can do less damage than screwing up things they don't understand. In academic publishing it seems like they just jump straight to the top instead. Weird system.
 
In the latest update, they have now published the response to our letter with a link to the pre-print of our letter--to be replaced in a day or two, I assume by the actual proof from the journal. They have also now added the proper citation for our letter to the response. As I mentioned, the editor had declined my request to do that, saying it would be obvious from the context what the response was referring to and that it had already been reviewed--the implication being that, once it was reviewed and approved, no further changes could be made.

I wrote back protesting that decision, which I found astonishing. I guess that worked. This is what I wrote:

Hi, Andrew--

I'm confused--The fact that it has been reviewed is irrelevant. The review was obviously deficient if the reviewers didn't notice that the citations omitted the letter in question. I fail to see any reason why this cannot be added without another review and it does not need a formal corrigendum. As the corresponding author of the letter omitted from the citations, I find it very ironic that the response itself engages in such sloppy reference practices. I mean, they are responding to a letter about improper citation practices, so this is a continuation of the same.

And the journal seems to not care. As a long-time editor, I find that indifference to this detail hard to understand. It is a small detail, and you're right that people will understand from the context--but it is a very salient detail that highlights the various deficiencies that have attended this entire process, including the fact that the production system screwed up and published the response without our letter. So I find your refusal to make this small and obviously needed change very disappointing.

Nonetheless, I'm glad we're finally through this process. Thank you for shepherding it this far--David
 
SNT Gatchaman said:
Finally
Click to expand...

Yeah. They finally sent me the proof yesterday for approval. That was a very problematic process overall but I'm glad it's finally out. In the next few days I'll post a smack-down of their response. As I figured, they're trying to justify it by saying that the additional people might have been interpreted as having FND at some point after the study being cited and that it's just a "scene-setting" sentence anyway, so who cares?
 
@dave30th

In this post "Trial By Error: Unconvincing Response to Letter on FND Prevalence Inflation" is this sentence :

The letter went through two rounds of peer-review; both our initial and later versions were also posted on a pre-print server, here and here.
Click to expand...

I'm guessing the words "here and here" were intended to be links?
 
Thread with a skeptical view on the topic of neuroimaging in FND:

https://twitter.com/user/status/1757023806747443390


I remain absolutely shocked with what the #FND field claims with regards to network connectivity. We do not know what changes in network dynamics imply in a causal manner *at all*, yet they use it as support for diagnosis and to classify patients? This should be looked at legally

The most advanced fields in network dynamics include the area of hallucination research, which DOES NOT DO, any such mechanistic claims like what we see the #FND field doing. Yet they are saying stuff like

By the way, I did my PhD in one of the most renowned labs in bodily self-consciousness and agency. I am utterly shocked by the sentence: "impairment of self-agency (...) is a defining trait of FND". Absolutely shocked, even more that it's implied caused by network dynamics

These people do NOT have any evidence for what they are saying. Their research is not even close to the best quality research on network dynamics (and those fields don't make half the claims the #FND field does!!).

I would love for big experts to weigh on this. Even
@OHBM
should make a statement honestly, because this will implode in the heads of everybody who works with network dynamics + we shouldn't allow our field to be misused like this.
Click to expand...
 
For example, our initial letter highlighted the authors’ agreement to correct the paper, and their subsequent withdrawal of this agreement; the final version did not.)
Click to expand...
This is some impressive Big brother fuckery right here, the kind that very rarely happens because it's too obvious*. This was a plain statement of fact, and it's removed simply because it makes them look bad. It's indefensible. Very similar to Cochrane's backtracking on acknowledging that the exercise review did not meet their standards. This professional bubble is simply immune from facts and accountability. There is almost zero chance that anything they do in there is valid because of this, it's so excessively and brazenly corrupt.

Also there is really a need to push on the whole "rule in" thingy, which some of the leading voices in the ideology have plainly admitted is BS they don't care about. For years they've been building this up, and here they fully admit that they don't care one bit, makes no difference to them. And because facts don't matter in this professional bubble, this is very much like Sharpe and Wessely getting a "special report" published about being harassed, then mere days later publicly admit the story isn't even true. We can't ever win here because the facts simply don't matter. This gets even more shocking over time as the scam is revealed and everyone, even bystanders, simply double down.

Because on a related note, I have noticed in recent days a concerted push to put Long Covid into the FND construct. If it's down to medicine and the patients can't push back, this will happen and stifle all progress. Well, stifle it further, since this is the reason it has been stifled to begin with. The stakes are enormous and excessively stacked against the patients.

Also on a related note with a comment above about "network connectivity", one thing I noticed recently is that this is the exact same claim about things being good, such as "exercise is good because it rewires the brain", and other examples. And here in the conversion disorder land it's bad because I guess this particular rewiring is bad and the good doctors can tell and fix it. Which is completely absurd. We are in ghost and healing hover hands territory here, they cannot possibly tell the difference and it's clear that it's entirely a matter of preferential judgment over what's convenient to them. They eat their cake, they sell it, they copy it, they sell shares and NFTs of it and they still have it. It's completely absurd how obviously wrong this whole scam is, but medicine bought it whole and there is no way to hold it accountable, it's basically the least accountable group of people out there outside of a dictatorship.

* Although clearly this is common in medicine because it happened a lot about COVID, especially the cover-up over it being airborne
 
It’s very common for medical researchers to exaggerate the prevalence of their pet condition so that they can exaggerate the real-world impact of their work in grant proposals etc. In the FND field, there is a clear expansionistic tendency to subsume more and more inside the FND category including headache, fatigue etc.
 
Sid said:
It’s very common for medical researchers to exaggerate the prevalence of their pet condition so that they can exaggerate the real-world impact of their work in grant proposals etc. In the FND field, there is a clear expansionistic tendency to subsume more and more inside the FND category including headache, fatigue etc.
Click to expand...

yes, it's a known phenomenon--diagnostic creep. it's helpful to maximize the purported impact of your work.
 
You must log in or register to reply here.
Back
Top Bottom