As this was mentioned in our Education Classes as an assessment tool (still to catch up on recording), I have started to draft an article and I wondered if anyone had had this assessment done by medical professionals.
The questions are about:
Orthostatic intolerance (poss people dx with PPPD)
Vasomotor
Secretomotor
Gastrointestinal
Bladder
Pupillomotor
Very interesting, thank you. PPPD is being massively over diagnosed and conditions such as orthostatic intolerance are being missed in the process. No attempt was made by the people behind the creation of this umbrella term (mostly men who are heavily invested in FND) to collect or disseminate the misdiagnosis stats re PPPD, which is very telling. Likewise it was known that patients didn't like or use the terminology and it was felt that changing the nomenclature could improve outcomes, yet that never happened. So it might be worth asking the people delivering the education classes why it didn't get changed.
It would also be interesting to know if they agree with Dr Kaski that everyone with PPPD, Vestibular Migraine and Mal de Debarquement Syndrome have FND. I get the feeling he made this decision (as reported in The Times in March in an article written by one of Dr Kaski's patients, Stephen Hounslow) unilaterally and without consensus from others working in this field. I have yet to find one patient with MdDS or VM who agrees with him.
I've certainly never had any of these other assessments done by medical professionals.
I wouldn't have thought they would know why it wasn't changed, they referenced it as a sub-type of FND on our Intoductory month, I could look back on the slides and find where that was referenced from, it that helps. They are more about rehabilitation, not necessarily about classification (if you know what I mean).
I could ask the Community, quite often the team answer too.
Improved outcomes would have included via tailored rehab so it's silly it wasn't changed, especially since it was a patient research priority. And, according to Dr Kaski, PPPD is no longer a subtype of FND so everyone with this label now has a neuropsychiatric label too - which is also silly. Classification is meant to be done by consensus (as far as I can tell) but I think Dr Kaski has gone out on a limb with all this. Not that I can get any sense out of The Times (where his views were published) about it and yet they claim to take complaints seriously.
I'm not sure who or what you mean by the Community and I don't want to give you more work to do but if anyone else can figure out why these 'eminent' doctors feel the need to land grab mainly female patient populations and slap psychiatric labels on us on the basis of other diagnoses, that could help loads 
xx
Hi
The Community refers on the Re-Active members, like on here.
I will see whether there is any reference to the article as they always give credit to the authors, first.
I really didn't know what the term nomenclature meant, so for those of you reading back its definition is:
system for naming things, especially in a particular area of science.
So are you saying that it would improve outcomes, ie treatment/rehabilitation outcomes if it didn't have an FND label?
Hi Lady4,
Here's the paper 10.3233/VES-201518
I have no idea why it's been designated as a 'functional' condition (patients were not involved in this decision) or why Dr Kaski seems to have moved it out of the FND subtypes and now considers that everyone with it (along with those of us with MdDS and VM) has the neuropsychiatric condition currently known as FN(C)D. However it was thought that simplifying the nomenclature could improve outcomes.
It's worth keeping in mind that PPPD is a 'human construct' and was constructed by men who are heavily invested in FND. It's also an umbrella term which encompasses several other conditions so no one is too sure what they've been diagnosed with or why. I was iffy about it from the off since some of the citations in the dx criteria paper are distinctly weird, eg the one about definitions of insanity from 1831 which is over 400 pages long and largely incomprehensible. Stone told me 'they could have used a better one' when I asked him about it. Which begs the question 'so, why didn't they?'.
This is where they referenced it from, but they are learning from us too:ncbi.nlm.nih.gov/pmc/articl...
Hi Lady4,
PPPD isn't a new phenotype; despite the 'sheer folly' of doing so (to quote Kanaan from his 'territorial expansion' commentary that accompanied the FND Subtypes paper) it's been on Stone's site for well over a decade yet as far as I can tell it wasn't mentioned in the economic burden of FNDs. And, according to Dr Kaski, it is now not a subtype and everyone with it has FND/neuropsychiatric symptoms as does everyone with MdDS and Vestibular Migraine. Erm, no we don't.
Like PPPD, so called non epileptic seizures are being over diagnosed so it could be worth asking why these two papers
2023 article. PNES- High Mortality Rate is a wake-up call doi.org/10.3390/jpm13060892
2022 article. PNES- The Empirical Evidence weighs in.- DOI:10.31080/ASNE.2022.05.0502
weren't cited in the latest paper about FND which infers that people may be consciously creating their symptoms. Sure, this is just a hypothesis and they do say that patients are not morally responsible for their symptoms but that should never need saying about any condition, so the fact that they feel the need to say that is cause for concern.
Still, at least the authors are being upfront that 'functional' means 'hysteria' which should mean that 'functional' gets measured on their 'propensity to offend' list at long last. For numerous reasons it's off the scale as far as I'm concerned, not least because this term was chosen partly because it's 'easily used with patients'. Yeah, right.
I have read this one before, for others that haven't read the article , the conclusion says "... PNES population, these patients must be given access to treatments for epilepsy including intracranial monitoring, AEDs and epilepsy surgery."
Yet, everytime you read an article, something else stands out, for me it is the question is:
Why if people are experiencing seizures that last over 10 mins or more (and not so long ago, I heard a mother mention her child is in them for hours), why aren't they been offered intracranial monitoring as they could have misdiagnosed PNES and they could be Non-Convulsive Status Epilepticus and treatment offered.
Great question, Lady 4 and the short answer is that Dr Carlson's papers don't make it to the citations in new FND papers (and neither is she invited to FND Society meetings) so her suggestions for assessment, monitoring and treatment get ignored and iatrogenic harm continues.
If only ...
Would you like me to post the article so you can try the self assessment. I also found the link to automatically calculate your score. I haven't tried it but it may give some useful insight.
That sounds like a good idea ..thanks.
Ok, its a work in progress as still need to listen to the 2nd Autonomic class to understand more:Conclusion of the Assessment tool:
The COMPASS 31 was developed as a self-assessment instrument of autonomic symptoms and function that is up-to-date, broadly applicable, easy to administer in a short amount of time, and based on a scientific approach. It was designed to provide a global autonomic severity score and domain scores that are both clinically and scientifically meaningful.
We believe that these goals have been achieved. Further validation of this new instrument in various autonomic disorders and degrees of autonomic failure is now in progress.
Not medical advice but may help with identifying which areas to regulate first.
The study:
ncbi.nlm.nih.gov/pmc/articl...
The questionnaire can be downloaded as a pdf if you google "Compass 31".
How to evaluate the score.
This was what we were introduced to in our Autonomic Education classes, it may help which areas that need a little work on, maybe additional sensory input.
Would love to read that article. Thanks, Lady4!
Interesting info ..thanks a lot. Will your education class give you some idea of how to work on the areas where you are in need of improvement?
Hi, yes there is always an explanation, diagnosis and treatment sections to the classes. Ie on Autonomic month, dx mentioned Compass 31 (diagnosis) and on Sensory month (treatment) sensory inputs and external focus. Not sure what this month (last week, still to catch up in was bonus Autonomic week, so a bit behind and missed dx week).
Thanks for the reply...looking forward to more info..when you have got time.
Hi Lady 4, no, there has been no mention of those tests. I’m in Canada, after having several MRI’s which has ruled out other possible causes the diagnosis of FND has been applied after that it seems like medically there are no more options. I recently went to a naturopath we are focusing on my overall health with special attention to supporting nerve function. I am two months in, I have better overall energy and brain clarity although the FND main symptoms are about the same. I do like this wholistic approach alongside the medical model.
Blessings to you on your healing journey 🍁
I think the holistic approach is best as everything in our bodies is connected and techniques on calming our nervous system from dysregulation needs to be prioritised in which ever way works for the individual - be it breathing exercises, meditation, recentering, relaxation, increasing/decreasing sensory input etc.
Help, I have an appointment for PIP assessment coming up!
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