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FND Portal Profile picture
FND Portal
@FndPortal
A person with Functional Neurological Disorder. Disability advocate. Patient advisor to research, clinical, + policy teams at FNDS, AAN, UCL, KCL, NHNN. he/him.
3 subscribers
Aug 10 • 13 tweets • 4 min read
Breaking Twitter hiatus to note that @dbdugger appears to be fraudulently selling neurocognitive testing:

* w/ out medical background or license
* using irresponsible comparisons of C19 to HIV
* advertising research techniques for clinical use (VBM)

Potentially prosecutable? 🧵 Image Let’s have a look.

Dugger sells the “SAND scan”, which is some proprietary unvalidated bullshit he cooked up.

Does that sound like strong language to you? Just wait. Image
Mar 15, 2023 • 8 tweets • 1 min read
One of our goals should be to restore agency for people with FND across biopsychosocial domains. That means treatment should be (partly) focused on helping people regain bodily control.
Oct 10, 2022 • 25 tweets • 6 min read
Revisited this paper recently and thought about my journey so far with FND, and how much is still unexplored.

Some brief thoughts on embodiment and “the missing middle”

jsmf.org/meetings/2007/… The paper is a classic: neuroanatomical Bud Craig on “interoception”, which is the sensing of one’s bodily insides.

In this paper, he describes this system: nerves going into spinal cord, up to brainstem, up to cortex in the brain.
Jun 5, 2022 • 24 tweets • 6 min read
It’s finally out! Here’s my deep-dive essay on the mysterious Functional Neurological Disorder: the perils of medical dismissal, the profound links between brain + body, and the long, long shadow of Hysteria.

🧵

medium.com/@fndportal/cad… In the early 2010s, I began to lose my ability to speak, walk, and use my hands.

The better part of a decade later, I finally got a diagnosis: it was Functional Neurological Disorder (FND).
Apr 25, 2022 • 28 tweets • 4 min read
Gonna respectfully disagree with the majority of what Dr. LaFrance says here. While acknowledging that Dr. LaFrance sounds like a caring and knowledgeable clinician (I would have loved to encounter anyone early in my journey who does as thorough an exam as he seems to), here's a few friendly criticisms.
Jun 5, 2021 • 19 tweets • 3 min read
Here’s an idea: FND counter-triggers.

If “triggers” are things that cause FND symptoms to start or get worse, maybe “counter-triggers” (things you can do to stop or reverse the spiral) is a useful concept for recovery. Counter-triggers might include things like grounding techniques, breathing exercises, or any number of tricks you can use to stop the symptom spiral.
Jun 1, 2021 • 15 tweets • 4 min read
This is a wonderfully clear thread summarizing a view on “PNES” that, as someone with FND (but to be clear, not functional seizures) I think is quite open to challenge.

Hopefully such a challenge could be productive as well.

Here’s a few examples. First, just want to say I appreciate Dr Mintzer laying out the specifics of functional seizures vs epilepsy and so on - and what docs should do when encountering a patient who might have FND.

FND is indeed a real problem, and his concern comes through.
May 20, 2021 • 19 tweets • 3 min read
Hello. Quick personal report today. 🙂

I’ve been buried in a couple projects, trying to figure out helpful ways to improve the situation for FND folks, and folks w neuro conditions generally. Also lots of stuff going on in my personal life, so I’m Very Tired.

But, a few quick thoughts:
May 20, 2021 • 4 tweets • 1 min read
No! Gah!

MS was actually recognized as a distinct disease by Jean-Martin Charcot (a huge 18th cent researcher of FND). Called “sclerose en plaques.”

Way before scans, it had a name and was distinguished from “hysteria” (as FND was called then), which is ALSO a real disorder! I’m not saying no one ever mistook MS for “hysteria” (god I hate that term), or something quote-unquote psychological, but this overall characterization is just wrong.

See for yourself:

en.m.wikipedia.org/wiki/Multiple_…
Mar 4, 2021 • 64 tweets • 14 min read
Alright HOW ABOUT THIS:

an FND tour of the brain

(thread) Functional Neurological Disorder is a common (but not very well-known) brain disorder.

It can come with a variety of debilitating symptoms: tremors, seizures, paralysis, blindness or other visual disturbances, and pain, for starters. ⚡️
Mar 4, 2021 • 4 tweets • 1 min read
Functional Neurological Disorder can be triggered by physical or mental stressors (or both).

One thing to keep in mind re: epidemiology of FND in the military: consider early life as well.

Many people join the military to improve their life from an already tough situation. That’s not everybody, obviously. People join for lots of reasons. But it’s a not-insignificant number. For many people, military = opportunity they otherwise wouldn’t have
Oct 8, 2020 • 27 tweets • 3 min read
Mark Micale’s paper “On the ‘Disappearance’ of Hysteria” is a very neat piece of scholarship I do not agree with at all.

Here’s why it’s useful, and an alternate perspective. So to start with, Micale is a historian who has done some very interesting work examining historical sources about “Hysteria”, the grossly-named disorder we now know as FND.
Oct 7, 2020 • 4 tweets • 1 min read
if honk works brain your good doog skrow niarb ruoy fi knoh
Aug 30, 2020 • 50 tweets • 9 min read
Hello, here’s a rambling thread-under-construction about my understanding of Functional Neurological Disorder 👇

what is it? what isn’t it? Normally I plan these things out but not today. So we’ll do a bit at a time and I’ll try to notate the breaks. Ok. Let’s get started!
May 31, 2020 • 19 tweets • 6 min read
I can’t even say what I think about what’s going on right now. I am so angry.

Let me instead offer a thread of writings that have helped me understand how we got here.

Please take some time to read some of it, for the sake of your fellow humans. Let’s start with one of the most essential reads of the Trump era

amp.theatlantic.com/amp/article/57…
Apr 1, 2020 • 30 tweets • 7 min read
It’s World FND month!

We’re also about to experience a global pandemic unprecedented in our lifetimes!

So why should you care about Functional Neurological Disorder?

👇👀 This thread isn’t meant to take away from the current focus on COVID-19. It’s an extremely dangerous development and it’s of course right that we take it seriously and prioritize it as we’re doing. 👍
Jan 4, 2020 • 41 tweets • 8 min read
So here’s a potentially productive conversation:

is Functional Neurological Disorder really a structural disorder or a functional one?

Should it be considered “psychological”?

Do we even know what it is?

(thread) To respond to Dr Tuller’s first question: how is FND different from other neurological disorders?

In some ways, it’s not! It creates real disability, with symptoms often comparable to other neuro disorders like MS, and the source of that dysfunction is the brain.