This article was shared with me recently and highlighted by Professor Jon Stone in the Q&A this week:
"Over time, the FND pendulum has swung between a brain disorder in the late 19th century to a purely psychological condition in the 20th century.
Today, FND researchers are suggesting that the pendulum rest in the middle. Defying dualism in FND may cause dissonance in clinicians, in those seeking tidy explanatory theories, and in classification systems. But it is an essential platform towards understanding FND and improving care for the millions of people around the world who have it.
The link to the article doesn't work for me. I was looking forward to reading it. I read most your posts since they are very informative and make me think.
This was something that Professor Jon Stone was talking about, if I find anything more recent will post. I am glad some of my posts are helpful.
Update: There are two viewpoints:
In the philosophy of mind, neuroscience, and psychology, the causal relationship between phenomenal consciousness, mentation, and brain states has always been a matter of debate.
On the one hand, material monism posits consciousness and mind as pure brain epiphenomena. One of its most stringent lines of reasoning relies on a ‘loss-of-function lesion premise,’ according to which, since brain lesions and neurochemical modifications lead to cognitive impairment and/or altered states of consciousness, there is no reason to doubt the mind-brain identity.
On the other hand, dualism or idealism (in one form or another) regard consciousness and mind as something other than the sole product of cerebral activity pointing at the ineffable, undefinable, and seemingly unphysical nature of our subjective qualitative experiences and its related mental dimension.
I found the definition below of brain and mind helpful as regards FND because it explains the reciprocal interactive relation ship they have, and how we can influence one via the other... two sides of the same coin ?
'The brain is an extremely complex neuroplastic responder. This essentially means, each time it's stimulated by your mind, it responds in various ways—including neurochemical, genetic, and electromagnetic changes. This, in turn, grows and changes structures in the brain, building or wiring new physical thoughts'.
Thanks and the link worked for me. If they want to challenge the false divide between mental and physical health, they need to take FND out of DSM and challenge Perez's notion that FND is a psychiatric condition. The pendulum is still swinging and this time it's been propped up by the 'territorial expansion' commentary from Kanaan (which accompanied the FND Subtypes paper, in which there was no patient representation) which is not open access so can't be properly debated by patients and doctors alike.
Drat, I've just remembered that there's great paper about psychological explanations for health conditions needing proof but I can't remember where I've saved it or who the authors were. It'll come back to me soon, tho' so I'll post it when I find it.
There is also a huge disconnect between what patients think 'functional' means and what doctors know it means and the relevant papers are not on the FND wiki. We also need to be aware that Stone's top tips for making the FND diagnosis have still not been substantiated with the relevant statistics about the removal of health organs or the misdiagnosis rates of asthma as a panic attack. He did tell me that they 'could be open to misinterpretation' but, as far as I can tell, he's done nothing to clarify them.
I am still not best pleased that he didn't publish my feedback about people with rare conditions being misdiagnosed with FND or address it via the feedback so that it was in the public realm.
Functional Neurological Disorder he explains as disorder of functions, ie not just movement, maybe the term needs changing.
As for Perez, still trying to find his Q&A, think I need to listen to my recordings, although some a bit sketchy as keep moving my phone for screenshots.
Also before replying to Panther5000 I did further research and could of swore I read something about a computer being created to measure cognition and made me think, is that what they are comparing "minds" too. Sadly couldn't find article again.
They keep saying that 'none of the current terms is perfect' and I think Stone has said they may never get a perfect term but one of the many descriptors for FND is 'symptoms where there is no disease' yet many people with a current FND label clearly have evidence of other conditions including migraine and head injuries. As we know, some are on the autism spectrum and very few people with autism view it as a 'disease' and may find Perez's 'maladaptive' terminology distinctly iffy ('ugh, that was written by a neuro normal'). Fast forward to PPPD and some people have been told they 'maladapted' from a previous vestibular insult (head injury or vestibular condition or both) which smacks of patient blaming. People are told what it isn't (not structural or cellular, not psychiatric) but not what it is, other than 'functional' whatever that means on any given day of the week or in any given paper or article. The recent article in the Guardian claimed that, in the context of FND, it means 'disrupting daily function' (or something like that) but we know it doesn't just mean that. Plus there are stacks of conditions that disrupt daily function that are not in DSM and Wessely (sp??), who was mentioned in that article, must know it doesn't just mean that since he's authored papers that unpack its meaning more thoroughly. So it looked like blatant hoodwinking, to me.
If memory serves the term 'functional' was chosen because it maps onto an understanding of modern imaging techniques (although it was around for years before that, in the sense of the function vs structure debate, which should have been over years ago), avoids a pointless discussion about brain and mind and .... wait for it ... is 'easily used with patients'. Yeah, right. We know know (from 'the function of 'functional' mixed methods review') that it has increasingly come to mean 'hysterical', at least in the minds of some neurologists and that 'functional' is used to convey one meaning to patients, and another to our doctors which means we can't have nice things like the Patients as Partners era of medicine or Shared Care and Decision making.
The term 'functional' is also used to aid diagnostic acceptance of FND because it doesn't overtly point to a mental health disorder diagnosis which is medical gaslighting 101 since we know (or at least some of us do) that FND is in DSM. What we don't know is what it means in the context of the overarching vestibular disorders diagnostic Venn diagram (a Staab creation, as far as I can tell). *Sigh*
Here's the paper I was thinking about from Carolyn Wilshire who has also done great work on debunking the PACE trial for people with ME/CSF.
Psychogenic Explanations of Physical Illness: Time to Examine the Evidence
2016Perspectives on Psychological Science11(5):606-631
Co-authors: Wilshire CE, Ward T
10.1177/1745691616645540
I got hold of the full paper but can't remember how and was in contact with the author on and off. Carson (one of the key players in the FND Society) said (about this paper) 'they don't understand the clinical realities' which was just plain rude and he also mentioned 'clinical instincts' which gave me cause for concern because no diagnosis should be made on the basis of instincts. Stone said that FND isn't psychogenic but still hasn't really said what it is. Other than 'functional' which means different things to different people and seems to have come to mean 'hysteria' *sigh*.
There's another paper (from Bell, whose writing I like, on the whole) about 'hiding meaning' which seems to suggest that meaning can be hidden to make a psychological explanation for symptoms more acceptable but that sounds like more of the same ie lack of transparency/medical gaslighting . Now, the really interesting thing about this paper (I'll edit this sooner or later to include the DOI) is that patients were involved in the design of the research but I couldn't figure out how they were involved because I haven't been able to access the methods section.
Edited to add that I've just got my hands on the PDF for this paper from Bell and the patient public involvement resulted from discussions with people with head injuries which is very interesting to me since they seem to be a predisposing factor for a lot of conditions (possibly including FND). Here's the PDF:
'Comfortingly Freudian"?? Pfft. For several years (after finding 'functional' in my notes, not that it had ever been mentioned to me in person or mentioned the 'ruling in' signs) I used to ask medical professionals what it meant on any given day of the week and one of them said that it was a relic from the Freudian era (which I think Stone has said too) and had largely been discredited. She then said it now means 'a change in function, not structure' and when I said 'what, like with migraine?' she went bright red in the face.
Fast forward to the human construct that is PPPD and I found it hilarious that Staab initially misgendered someone in a case study about it (twice - the second time after extensive rehearsal, thereby proving that it was a fake case study). It was Freudian slip comedy gold and brought the FND Society into disrepute but the joke wore thin, very quickly.
I think they mean comfortably Freudian for the psychiatrist, not the patient! I like this bit "There are patients in whom a conversion model still makes sense, but others for whom it is preposterous". It was preposterous for me, but that didn't stop the Freudian psychiatrist from clinging to it for 2 years until I finally gave him the heave ho. It was so comfortable for him that he wrote a whole (really bad) book about it!
I hear you and good for you for giving him the boot. A couple of people I know who have previously accepted a conversion disorder have successfully had their diagnoses changed to Complex PTSD and they both still have medically induced complex PTSD (aka 'a sane response to an insane situation') because of previous experiences with members of the medical profession. Medical gaslighting is commonly cited as a reason for that - no surprises there, then.
Meanwhile I would still like to know what the FND Society and others working in this field ('money for old rope' to quote my neurologist friend who has left neurology now because of the way he was mistreated when he got Long Covid) think about 'hysteria' being a keyword in the latest FND Hypothesis and what they think us punters think about it too. Not that anyone seems to have bothered to ask us yet.
I never really accepted the conversion disorder hypothesis - I challenged him on it in our first session, asking him what is the biological mechanism for it. Needless to say, he changed the subject. He did eventually diagnose me with C-PTSD, because of my experiences in the hospital, but that was on top of the original diagnosis, not instead of, and I've never been able to shake it, other than subsequent doctors calling it FND instead. Do you know anyone who has been diagnosed with Mitochondrial Disease? A friend, who used to be a nursing professor, queried it when I told her my story.
Hmm, I don't think he's helped to empower you to better health and ditto the subsequent doctors. Diagnostic overshadowing is a huge issue for patients once the FND label is in our records. Yes, I know a few people with mitochondrial conditions and they all experienced iatrogenic harm via prolonged diagnostic odysseys which delayed their treatment.
Thanks for sharing this. I think the medics are very slowly moving in the right direction, from a place of some mix of arrogance, ignorance and projection of all of that onto their patients (aka the gaslighting). I think the somatic branch of psychotherapy as exemplified by Van der Kolk (himself a psychiatrist), Peter Levine, Stephen Porges (also a medic), Pat Ogden and so on are kind of there already, although I'm not sure how aware they are of FND, as mostly they talk about 'trauma' (although their definition of trauma is really anything that overwhelms the nervous system). But they work from an embodied nervous systems perspective and the reason psychotherapy comes into play with FND is that we can influence the nervous system via certain kinds of psychotherapy. Porges' Polyvagal Theory is a key example. As human beings we regulate each others' nervous systems via our relationships. If someone is angry with us we really feel that don't we, and we become dysregulated. Equally we can heal via human connection. Polyvagal approaches take that and use it with full awareness of the nuances of that. This is also why the gaslighting by the medics is particularly abhorrent. Its like the complete opposite of an aware embodied somatic psychotherapeutic approach. I would contrast that also with CBT, which seems to be the only kind of psychotherapy medics really seem to know about. CBT has many virtues, but in its core essence it is about as disembodied a psychotherapy as you can find. Of course a CBT therapist nowadays might work in an embodied way, for example if they add in EMDR to their toolkit, and they might be able to create a great therapeutic relationship, but pure CBT is a very 'top down', aka cognitive, left brain, rational approach which in its earlier days did not even pay heed to the relational side of things at all. I think the NHS likes it because it can be easily manualised and measured. But some of the best and most powerful human things are not neat and tidy and easy to measure (although evidence can still be gathered in various more qualitative ways). We are much more than those things, especially in FND. Here lies some of the confusion, I think. We cannot simply talk our way out of FND. We have to use those parts of us we cannot access purely through words. But words help us to manage the embodied process of connecting with the rest of the nervous system.
Arielle Schwarz has a new book coming out that outlines the body based therapies that can be used for trauma.amazon.co.uk/Polyvagal-Theo... This therapist, based in Boulder is a real fan of somatic yoga (lots on Youtube) and a fan of Porges, She knows her stuff and 'walks the walk'.
With what to recommend it often boils down to what's available and the unique interests and approach of the particular therapist. But I would expect good results with therapists skilled in polyvagal therapy, sensorimotor psychotherapy and somatic experiencing. Any kind of experiential approach. EMDR where there is a particular trigger or trauma that can be worked with, Brainspotting sounds promising too. I think any of those calming complementary therapies are probably useful in the mix. Unfortunately I don't get the impression there's been a lot of research re. fFND specifically. I get the impression again that it's lost in the gaps between medics and their talk of 'neural networks' and psychotherapy that talks about 'dissociation ' and 'trauma'. It's going to be somewhat unique to the client too (we like to say client not patient in the psychotherapy world as its supposed to be more empowering!), as if there is an identifiable trauma there's more to work on than if not. A therapist whonis really curious to get to the bottom of it and has some of the above ought to be good.My son finally has started at CAMHS after 11 months and I'm really pleased they've given him a dance and movement therapist. That might sound off-beat but I think this might really help my little boy who seems to have some problems with interoception and who has at times cut off whole swathes of his body.
Its good that he was willing to try therapy, my son agreed to "talking therapy" suggested by Neurologist but when it came down to the referral, refused as no other "commissioned" condition. Referred to Camhs and saw quickly but by that time not interested and just went through the motions. Having them engage in therapy is half the battle.
Thanks for the recommendations, have heard of some of them and checked out a few local therapists but will cross reference them with their therapies.
What do you mean by no other commissioned condition? Very frustrating when they won't engage. It's such a common problem, so I hear. And happens more because of those delays and being passed around and confused or worse. I was half expecting the same at this point tbh but it's looking good. Feel free to pm me if you want me to kind of translate anything. You may find people who describe themselves as trauma-informed might have the right skill set. Those specific ones I list above are not very easy to find in the UK yet, but 'integrative' therapists often draw from such a wide range of things that they can come to the same place, if their focus is trauma or somatic. People tend to do a core training of either person-centred or CBT and then add on smaller bits of training, and some people also read and consult widely. Bit of a minefield, got to admit, but also some great people out there!
Have you tried brain gymn with him ? I have a 25 year old book about that called 'Smart Moves' aka 'Why learning is not all in your head' and thought, that must be old hat, but the ideas don't seem to have moved on or been checked out with imaging that wasn't available ' back in the day'. Do you think your son would benefit from multi sensory learning?
Here's something very exciting coming up from Stephe Porges soon. Showing they've noticed FND:
Rest and Restore Protocol™ — An Exciting New Product in Development
We are excited to further explore the healing potential of music through a new joint venture!
In collaboration with Polyvagal Music LLC™, Unyte will be launching a new acoustic protocol designed to entrain physiological functions that calm and promote mental and physical restoration.
The Rest and Restore Protocol™ has been developed as a 'neural exercise' designed to entrain the neural rhythms supporting homeostatic functions associated with the dorsal vagus.
The protocol is designed to be used by therapists, including mental health and medical providers, when treating clients with symptoms associated with chronic stress and functional disorders (e.g., functional neurological disorder, functional pain disorders, functional disorders of the gut brain axis including functional abdominal pain disorders, etc.), whereas the Safe and Sound Protocol™ is focused on the ventral vagal complex and is designed to allow engagement and to promote sociality.
These two protocols complement each other and will be exclusively available through Unyte.
We look forward to sharing more here in the coming months and invite you to follow along on this journey by signing up for updates.
The Creators of Polyvagal Music™ and the Rest and Restore Protocol
They have other music things out there already but the FND one is in press. The SSP is for the ventral vagal part of the parasympathetic nervous system which is particularly about relationship and safe healing connection (it mimics the prosody of a mother's voice although you'd never know because it is music!). The new version is for the dorsal vagus part of the PNS ... I've no idea what it's doing but it's exciting that they have something up their sleeve. These things are sadly not cheap at all and have to be delivered via a therapist. Really I would love to see the day where the NHS buys invests in these things instead of drugs and maybe find a cheaper way of delivering them. They are starting to head in that direction with other devices like the Flow headset for depression. There are other things out there on the market which claim to be good for anxiety. I'd be interested to know if anyone with FND has found them useful, e.g. Nurosym, which stimulates the vagus nerve in some way to bring about calm.
It might be worth trying the Beechband just to sample the effects of sending tapping signals to the brain ..cheap and cheerful , donation to charity included.
Apparently, there are lots of other devices on the market that do a similar thing. Thanks for checking it out, J only checked their reviews usually cross-reference with Trust Pilot etc.
Update:
Muse is another. Pulsetto. Sensate, Vagustim, Laselocks also mentioned to me.
I don't think I want to get a device at present .. you would need to buy an additional device just to see if you have an HRV difficulty in the first place... our GP's never mention it do they?
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