Great article by a Psychologist in the US who states that the framing of Functional Disorders needs to change. You will notice that despite brain changes being found in the last couple of years, the line from experts still tends to be around the 'software' problem, ie/absence of structural disease.
This is what she is disputing in this well referenced article.
"The vEEG test result and the ‘positive signs’ employed to identify functional or ‘non-neurologic’ disorders have isolated patient populations with pervasive brain disease. In other words, the ‘functional’ diagnostic markers are identifying patients with serious neurologic disorders."
He's a she and I have a lot of time for her She asked me to disseminate this paper widely so I've sent it to my neurologist but when I try to post it on social media I get an error notice. Hope you have more luck, Mic67
Yes I'm embarrassed that I assumed she was a he! Edited! Do you know her?
I emailed her to thank her for it and she said the same to me, I've shared it on Tiwtter and the link worked fine.
I'm concerned as I've seen FND groups are currently putting some of the adverse effects of vaccines down to stress related FND. I think this is a very bad call, absolutely impossible to know what is causing these neurological reactions at this point in time and is gaslighting both groups of patients.
Ah don't be embarrassed - it's an easy mistake to make and now you're aware of it you're less likely to do it again. Many people assume the same thing about scientists in all sorts of fields and it's the same in the arts. I don't know her but found her response to me empowering after the FND Society slammed the door in my face, fairly recently.
Oh dear - this is the only FND group I'm in these days so I didn't know about the gaslighting re the vaccines. I've seen loads of it re Long Covid tho' - some of which is so irrational as to be laughable, but yet it's taken seriously by some of the biopsychosocial brigade. *Sigh*. Hope you're doing OK, Mic67.
Yes I felt the same, and I'm sure she is pleased to get our feedback. What happened with FND Society? Understandable if you don't want to say here but feel free to msg me if you like. Mic
From what I hear, Catherine Carson's paper was removed from circulation at one point, before being reinstated. I find this worrying since, as far as I can tell she is working hard to keep the conversations around 'FND' open and patient centric, rather than in the grip of various powerful journals. I hope that your feedback - and that from others - will encourage her to keep going I sent her paper to Dr Tim Hain (an excellent vestibular/neurovestibular specialist in Chicago) who gave it the thumbs up
Re the FND Society ... this is the 'long story short' version. A while ago I watched one of their webinars about a condition called Triple PD (one of the conditions listed on Jon Stone's site, erroneously in my opinion) which gave some potentially misleading information about another condition (a rare condition called Mal de Debarquement Syndrome - which I have to co-exist with, unfortunately). Since the presenter (Prof Staab, one of the driving forces behind the triple pd dx, along with Jon) said he was up for debate, I contacted him but he didn't reply (although he'd been quick to do so on an earlier occasion). So, eventually, I contacted the FND Society and they slammed the door on me, hurling their pride at me in the process.
Their response is/was a great example of how *not* to do patient engagement/scientific communication since it was a classic case of 'we control the narrative and you're not welcome here' which isn't congruent with the Patients as Partners era of medicine or the current UK Rare Diseases Framework. They did have the decency to say that their reply was probably not what I was hoping for - true dat ;).
Unfortunately (although understandably) the vaccine/COVID situation is now foremost in everyone's minds so it's been hard to refocus the narrative to examine how damaging - and how common - psychiatric diagnoses can be for people with rare conditions. But I'll keep on keeping on, when I can because I don't want this situation repeating on the next generation of people who develop rare conditions. People with balance/motion sensations conditions are also prone to getting psych diagnoses so I'll keep on keeping on for this patient population too
Oh thank you for taking the time to write this and I am sorry you have these awful balance disorders to contend with.
The only experience I have of the motion issue is an out of the blue occurence of what I can only figure was BPPV about 18 months ago. This resulted in me going flying across the room quite a few times and having to crawl around my flat, until I figured out what was triggering it (head movements).
In typical NHS style, by the time my referral for ENT had come through, I had cured it by doing You Tube exercises daily for around a month, which involved me hurling myself onto the bed!
Interestingly, at the time I was seeing a neuro physio for my 'FND' gait problems, she tried to lump this serious motion disorder in with that and 'distract' me by getting me to bend down and pick up a drink, again I fell because dislodged ear crystals do not tend to respond to distraction!? (who knew lol) I never saw her again after that. Sometimes I think we know more than some therapists!
I am sad to hear that this article was censored, I would love to know a bit more about that as well as her history and motivations for writing such a well referenced piece. I know Diane O'Leary and others frequently write on these type of diagnoses but I can't find Dr Carlson on twitter. I think it's odd that none of my usual 'FND' Twitter contacts have reshared the article, which makes me think that anything not penned by a select group is heresy. That's concerning in itself!
Hi Mic67 Sorry for the tardy response - I've been busy helping to look after my Mum and have intermittent access to the internet at the moment. Thankfully my balance/motion sensation symptoms are usually fairly low these days although - like many people with migraine - I can get a symptom hike when the barometric pressure changes or when I change altitude.
BBPV is horrid - I really feel for you and know how lucky I am not to get it. The general NHS approach to any motion sensation symptoms is to wait because they 'often' resolve. Hmmm, not really OK and certainly not OK about the lack of inward investment into balance conditions in the UK, compared to other countries. Really common problem and can cause falls/unnecessary deaths. So that - and encouragement from you and others - keeps me motivated re the advocacy.
Oh that kind of 'lumping' does my head in and it's all too common with balance conditions. Also I think the whole distraction deal is, if you'll excuse the expression, a distraction from the main, patient centric issues around having on-going symptoms. Which are to do with research and access to evidence based therapeutic options. It's not like 'they' can provide us with someone who can keep us distracted all day every day and even if they could, they wouldn't be able to keep distracting us when we have to do boring chores like laundry etc (not fun for anyone with BBPV, for sure). I talked with a great health advocate about the distraction thing a few months ago and her take on it was very interesting. She has Generalised Anxiety Disorder and medically induced Post Traumatic Stress Disorder and, as she says, her partner, Mum and a few others (including her support dog) can 'distract' her from the symptoms for hours on end, on a good day. But that doesn't stop them from coming back when the distraction stops and - in her words - 'why would anyone think the symptoms of anything (depression, pain, migraine, grief etc etc) would magically disappear on a permanent basis unless the root of them is known, understood and being treated? Yes, it's wonderful to have a break from them via some distraction, but that doesn't mean I'm being treated so that I can get my independence back. It's just a short term sticking plaster and it can hurt like hell when it's ripped off.' Wise words, in my not remotely humble blah blah blah.
I don't know anything more about Dr Carson's paper being suspended for a while but I think part of her motivation also comes from having a doctor in her family who is horrified regarding how many people get a 'functional'/'conversion disorder' diagnosis. I think she is also aware of 'leading' journals and other news outlets being in the pockets of some of the bio/psycho/social brigade and how influential they can be in medicine. Meanwhile Dr Carson doesn't 'do' social media so you won't find her on twitter
I like O'Leary's work and also admire Annie Oaklander's work on 'fibro' (another diagnosis thought to be 'functional' and therefore people may be likely to be subject to more of that lovely lumping if other symptoms present). That's an interesting observation about your usual 'FND' twitter crew not reposting Dr Carson's paper - things that make us go hmmmm, eh??
Hiya, yes it seems only selected people are allowed to write on FND - it's actually really shocked me as it's such a good paper and feels 'off' that other than here, patients don't seem interested.
Thanks for the heads up on Dr Oaklander, I will look her up. I've refused to have Fibro put on my notes, I accept I have an element of central sensitisation and disordered pain but do not need another one of these diagnoses thank you very much!
I had an excellent session with an NHS physio yesterday. I've a great deal of muscle atrophy due to 4 years of shoulder issues. I've winged scapula's and I just found out that these can apparently be caused by the paralysis of a particular muscle and nerve damage. So for years, I've thought this was an inflammatory condition when it is possibly neurological...
At the same time, he diagnosed me with some kind of Occular Motor Disorder which was related to eye movements and left sided weakness, he said this kind of thing is usually seen in 'whiplash injuries'. ( I have some cervical canal stenosis which has just been revealed on MRI).
My 'FND' was dx because of leg weakness and gait disorder. I have never felt it fit the description of other types of common 'FND' gait patterns. I also have tinnitus, urology issues and extra heartbeats.
In my eyes, all these things are one large undiagnosed 'thing'....It's just too 'coincidental' to have so many parts of the anatomy break in a 4 year period and them not be related!
Hi. Sorry to jump into this thread. Just wondering if you have heard of episodic ataxia? Some forms of it cause balance issues, tinnitus, nystagmus (eye movements) double vision, weakness and the list goes on... most people and even neurologists know very little about it because it’s rare but I have this along with paralysis. It’s not FND. It’s a channelopathy.
Hey thanks so much for your reply. I will look into this. Thankfully I've managed to get a neurology follow up in a few months time so will see what they say!
Yes, Dr Perez has also published an article to this effect - that covid side-effects that look neurological are psychological. When I got my vaccine, I deliberately didn't find out what the side-effects were. But I got them anyway. I was even surprised, because I wasn't expecting any. I've never reacted to a vaccine before so was confident I wouldn't this time either. I did this as an experiment because I was diagnosed with FND 4 years ago and was told I'm "converting my emotional distress". This has never rung true for me and now I'm even less convinced.
The assumption that these adverse reactions are FND is based on You Tube videos of patients with seizure/convulsion type events and tremors. Surely I am not wrong in feeling that ultimately NO ONE at this stage of the vaccine rollout can possibly say that these reactions are 'not the direct result of toxic COVID19 vaccine effects'. It is categorically impossible to know this and will be for a few years.
I'm afraid that's my opinion about everything to do with FND - they state things as certainties with zero scientific basis. From being told that you are "converting emotional distress" to saying that changes in the brain on scans are the result, not the cause, of your symptoms. I'm willing to accept that stress makes things worse for me, but I don't believe it's the whole story.
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She asked me to disseminate this paper widely so I've sent it to my neurologist but when I try to post it on social media I get an error notice. Hope you have more luck, Mic67 
I never saw her again after that. Sometimes I think we know more than some therapists!
Just Diagnosed with FND 
Physical Rehabilitation for FND Patients at the Mayo Clinic
Functional Urological Disease
