David Spencer

Listening to Music and awaiting the Nasa Launch

Preparing to discuss the failure of the UK Government of the Children Act with the Shadow Sec of State for Children and Familes on Friday.

@FndPortal There are always those who look for the single unified theory of everything in many disciplines that everything can be resolved by disassembly. Sadly this mindset pervades science in general.

One of my takeaways from historical studies of FND is that some investigators went astray in pursuit of a single etiology. There is no one cause of FND. There is a system-of-systems (core allostatic brain networks) where different psycho/physiological stressors converge.

@FndPortal As ever awesome in its true meaning of the word. Inspiring work.

Hello friends! For those who are new to this account, I’d love to share with you a few of my Functional Neurological Disorder projects. Here they are 👇

@FndPortal Your passion and desire to get relevant/current info to those who will benefit - patients

Out of curiosity: why did you follow this account?

@AlanCarson15 May I offer a view that where you say 'timings of messaging' to suggest refining it to be 'the consequence of latency within the neural network'. Just a thought. And there be no diagnostic tool to measure that either.

We Might Have Long Covid All Wrong | The New Republic newrepublic.com/article/168965…

@jonstoneneuro @gettheaword @NEAD_UK Hi Jon, sorry to bang on again about open access to this material for patients. I firmly believe that empowerment delivers quality outcomes for patients. Please don't hide behind we are a society an elite and only we can interpret. That way of thinking blocks progress.

@gettheaword @NEAD_UK Hi Anna - it’s material oriented to health professionals and just for attendees (and members later) - sorry. pwFND can gain access to FND content via community access. fndsociety.org/community-acce… Resources are all free on neurosymptoms.org and am in process of making more

Did you miss some sessions from #FNDS2022? If you registered for the meeting then it’s all available for catch up viewing for the next 30 DAYS only. At a later date, sessions with consent will be available for FNDS members only. Enjoy!@FNDSociety

@jonstoneneuro Hi Jon, is there any good reason as to why these should not be made available to the wider community of patients and not just members of a 'society'. After all, empowering patients with knowledge is a pretty good ideal to have and it reinforces the notion that patients come first

@FndPortal Here you go I maintain my own as there are no longitudinal studies. I have the data broken down by hour, type, preictal markers post ictal et al. I have used this to manage my probability of seizure events note not predict. At onset 6.8 now 0.06. Neuroplasticity.

One thing I’d like to know more about: how frequent are FND seizures, typically? ie, we know some people have only one every once in a long while. Others have dozens per day. what’s the distribution on that?

@FndPortal Great read and your sense of humour shines through. Loved it and will share.

Curious about “hysteria?” Wonder what it has to do with demonic possession, vibrators, and cybernetics? What about its connection to medically misunderstood disorders today? This hastily-written (but obsessively researched) blog post is for you! fndportal.org/2020/12/26/how…

@jonstoneneuro That means > 1500 times their circle of influence more informed and empowered. Brilliant Jon. I tell everyone I know about it. Should be in every GP practice as a flyer. Let me know. I may be able to help on that front locally....

The Neurosymptoms FND guide app has had >1500 downloads since Jul 1st. Initial feedback +ve especially for finding content. Free to download on iPhone - apps.apple.com/us/app/neurosy… or android play.google.com/store/apps/det…

@jonstoneneuro Great resource Jon. Keep up the truly invaluable work. In the two months since being diagnosed via video EEG your website has been the only place to find rational information. David

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/

@jonstoneneuro What is missing is a consensus care pathway for both a&e admissions for acute presentation and GP for community presentation. Without commonality it will always be luck of the draw and not part of the fabric of established protocols. I note your recent paper.

I agree that a website - even one I made - is not enough for most people with FND. We’ve even done a trial to show that. n.neurology.org/content/95/13/…

Perfect day for some simply beautiful music. Kraftwerk Europe Endless - 42 years on after having first heard this. it is remains one of the finest pieces of music which changed the way music was thought about and produced. Play loud in a spatial area youtube.com/watch?v=cqGsi9…

Emma graduated today 1st Class BSc Hons in Maths - whoopee.

Anyone got any non-linear macros for use in R ?

Setting up telescope to photo four moons around Jupiter.