Pinned
Thank you for everything, friends - the community here was remarkable while it lasted.
But Elon has destroyed this place.
So I’m out.
See you on other platforms.
FND Portal - is no longer on X
22.2K posts
FND Portal - is no longer on X
@FndPortal
A person with Functional Neurological Disorder. Disability advocate. Patient advisor to research, clinical, + policy teams at FNDS, AAN, UCL, KCL, NHNN.
- Neuroanatomical terms sound a lot less scary in English: Locus Coeruelus - blue spot Substantia Nigra - black stuff Reticular Formation - looks a bit like a net I guess Cauda Equina - a horsey tail Hippocampus - a sea horsey Nucleus Ambiguus - no idea honestly
- 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. 🧵
- A thread of threads about Functional Neurological Disorder 🧠🧠🧠 All future FNDP threads on this topic will be added here as well! 👇
- the brain is complex neuroimaging is still basic statistics is hard maps are not territory many studies don’t replicate disorders have fuzzy borders there is no average patient lots of reasons to stay humble
- Replying to @helenlewisHelen, I’m sorry that you’re desperate for a party. But “there will be casualties” is an abhorrent thing to write. Most of these “casualties” will be the most medically vulnerable of your fellow citizens. Are you willing to specify which of us you’re willing to sacrifice?
- Just to be clear: The concept of FND that many people first get from a doctor - “tests are negative, you don’t have anything, therefore it’s functional, and that means psychological, not physical and not really a medical problem” - is not what we’re defending when we talk FND.
- Replying to @Neuro_SkepticEagerly awaiting the author’s next paper on vagina dentata
- Not everyone with functional neurological disorder has trauma, and that’s an important point to make. But what we’re not going to do is throw people w #FND who DO have trauma or mental illness experiences under the bus. nope
- Happy FND Awareness Day! Functional Neurological Disorder is an often severe + disabling brain condition w multiple causes. FND was traditionally neglected by medicine. Now, we have a chance to relieve suffering, make healthcare more humane, + better understand the brain. 🧠
- Some happy personal news: I've recovered enough that an opportunity has come up for a full-time job and I'm going to go for it. 8 hr workdays still feel like a big jump but I think it's the moment to try. Thank you to the docs and community that made this possible for me. ❤️
- One of the problems many people w FND have is that we’re not offered treatment after diagnosis. The reason for that is simple: many docs don’t know how to treat it. The reason for THAT is simple: FND isn’t taught in most medical schools. Time to get FND into the curriculum 💪
- Hello infosec tribe, thanks for the follows this week ☺️ If you’re interested in Functional Neurological Disorder in the wake of Tinker’s recent brave discussion, here’s a short thread and a few of my best attempts to explain. 🧵🧠🤠
- The dismissiveness of the phrase “it’s all in your head” (in a medical context) is very weird. That’s like saying, “There’s nothing physically wrong with you. You just have a problem in the organ that controls all the other organs.” That is the last place I want a problem to be
