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Feb 22 • 20 tweets • 9 min read
FND thread collection from this account. Went back and chose a few I've been personally involved with- some based on our 10 myths of FND paper. 1/
FND is a diagnosis of inclusion. We covered some of the positive diagnostic features of FND in a BMJ review in 2020.
It's not unusual to have FND and another condition, like epilepsy or MS. It doesn't have to be one or the other. We're also learning how issues like joint hypermobility, autistic spectrum disorder and many others may be relevant.
FND is not feigning or malingering. Thanks to everyone who helped boost this recent tweet and @natrevneurol review with Mark Edwards and @M_Yogarajah .
FND shouldn't be thought of as only 'psychological'. Psychological risk factors and difficulties are common in FND but they are just risk factors and don't apply to everyone.
The brain doesn't have a 'psychological' bit and a 'neurological' bit - it's all one thing. FND is a disorder that OUGHT to exist based on contemporary models of how the brain operates in a constant state of prediction.
In FND the brain is trying too hard to move, and feel. When you try too hard to go to sleep - there's no way you're going to sleep.
This is why we've really got to stop using the word 'organic' - everything that goes wrong in the brain and to people is 'organic'. How could it not be?
FND research has really been taking off in the last few years. The @fndsociety is helping to bring researchers together with a common purpose to figure out the causes and treatment of FND
FND and chronic pain are partly what happens when your brain 'learns' the wrong way to move and sense. How can you help your brain 'unlearn' something when you can't just switch it off- it's really hard. tamethebeast.org
But a good place to start is educating yourself about FND - I hope neurosymptoms.org - revamped in Jul 2021 with a phone app helps
I also did this Q&A webinar for @FNDHope in 2022.
And if you already have a diagnosis of FND and are trying to get your head around what caused it or other issues like pain - and want to communicate better with your healthcare provider try the FND formulator

We've made progress in defining and testing what physiotherapy, psychological therapy, occupational therapy and speech and language therapy should look like in FND
Physiotherapy for FND- led by @GNielsen_Physio
jnnp.bmj.com/content/86/10/…
Occupational Therapy for FND - led by @CNicholsonOT

Psychological therapy for FND - the CODES trial led by Laura Goldstein. and evidence from other psychological therapy trials as well -

And speech and language therapy for FND - led by @JanBakerVoice and @lauramcw

There are so many brilliant patient organisations, advocates and researchers in the FND community now - I can't name them all.
There are hundreds of great research papers, media campaigns, threads, conferences and short films out there. Exciting times!
But special shout out to colleagues in Edinburgh especially @AlanCarson15 @IngridHoeritza1 & @lauramcw, the rest of the Edinburgh FND research group (see report below) and our financial supporters.

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More from @jonstoneneuro

Jon Stone Profile picture
Feb 16
‘Why FND is not Feigning or Malingering’ - our new @NatRevNeurol review and synthesis - with @M_Yogarajah and Mark Edwards nature.com/articles/s4158…. a thread… 1/
Health professionals have found many ways to ignore people with FND over the years including ‘The diagnosis must be wrong’ and ‘It’s not my specialty – go see someone else’ – but the most pernicious has been ‘its probably just a form of feigning’. 2/
You might say, why does anyone have to write this article? It's obvious that people with FND suffer terribly. But that suffering is often compounded by disbelief from health professionals and even friends and family. This recent study is an example. pubmed.ncbi.nlm.nih.gov/36626907/. 3/
Read 15 tweets
Jon Stone Profile picture
Oct 30, 2022
NEW! Neurosymptoms FND Guide Formulator - a new tool for people with FND on the neurosymptoms.org website. This thread explains why we hope it will help patients and clinicians make sense of FND and improve communication. formulation.neurosymptoms.org . 1/…
The FND formulator is designed to:
✅Help you make sense of your symptoms
✅Understand which of your conditions are functional disorders
✅Think through potential causes and triggers
✅Prepare for a healthcare appointment
✅Communicate better with healthcare professionals
2/…
The FND formulator consists of four modules – you can do bits of them or all of them – which get turned in to a personalised report to share with your health professional or just use to keep a record of things over time 3/…
Read 18 tweets
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Apr 14, 2022
Just in time for FND Month - our review of FND for @lancetneurology led by @FNDSociety president @MarkHallett007 includes functional cognitive disorder and persistent postural perceptual dizziness (PPPD). Free link (until 1.6.22) in next item in thread 1/
thelancet.com/journals/laneu… Image
FND has come a long way over the last 20 years. Lancet Neurology asked us to take stock of what is now a rapidly expanding field. Free link until 1st June 22 here - authors.elsevier.com/c/1evn45FFzKqo… 2/
Two psychiatrists @lauramcw (Edinburgh) and Jeff Staab (Mayo Clinic) help us consider whether functional cognitive disorder and PPPD (functional dizziness) belong within FND. We think they do by virtue of similar diagnostic features and shared mechanisms. 3/ Image
Read 13 tweets
Jon Stone Profile picture
Aug 4, 2021
Functional tics. Spotlight on a new page/factsheet for the updated neurosymptoms site/app co-written with Isobel Heyman @GreatOrmondSt , @hedderly_tam, @ChristosGanos and other colleagues. Thread...1/ neurosymptoms.org/en_US/symptoms… Image
Functional tics have their own distinctive clinical features as well as some features that overlap with Tourette syndrome. Clinicians around the world have seen a large increase in people with this problem in the last couple of years 2/ Image
Tourette’s is developmental, starting in early childhood, and more in boys. Functional tics often begin quite suddenly in teenagers, more in girls. Functional tics commonly occur with other types of FND including tic-attacks with features that merge with functional seizures. 3/
Read 8 tweets
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Jul 1, 2021
Today we are launching the new neurosymptoms.org website and app - now named Neurosymptoms FND Guide. This thread takes you through the new features. I hope you like it! Its at the same address 1/ Image
I started neurosymptoms.org in 2009, frustrated that there was literally NO information for my patients with FND online Since then, the FND landscape has changed dramatically. We have many FND organisations and from 2019 @FNDSociety for health professionals. 2/ Image
Neurosymptoms is used by around 50,000 people a month around the world, and is often recommended by health professionals. Its not a treatment for FND in itself, we’ve shown that in a trial - n.neurology.org/content/95/13/…, but I hope it’s a good starting point. 3/
Read 19 tweets
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May 8, 2021
FND in the Emergency Department. A new review for @AcademicEmerMed with Sara Finkelstein, Miguel (ED) and Achelle (Neuro) Cortel-LeBlanc. Open access - onlinelibrary.wiley.com/doi/full/10.11…. A quick thread , especially for ED folks 1/..
FND is one of the commonest neurological problems in the ED. At least 10% of all seizures in the ED and around 50% of ‘status’ presentations. 9% of all stroke presentations in London. 9% of all acute neurology admissions in NZ. 2/
FND is a problem at the interface between neurology and psychiatry. It has its own unique neurobiology. This international review just out in the last couple of weeks. 3/ sciencedirect.com/science/articl…
Read 11 tweets

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