Functional Neurological Disorder (FND) - articles, social media and discussion

Functional Neurologic Disorders
DOI:
10.1891/9780826184498.0026

Authors

• Revivo, Gadi A. |
• Amstutz, Diane K.

Abstract
Functional somatic symptom disorder is an umbrella term that includes functional symptoms that occur across multiple body systems and involve disturbances in neurophysiologic regulation. These include diagnoses such as functional neurologic symptom disorders, functional gastrointestinal disorders, chronic pain syndromes, chronic fatigue syndrome, and dysautonomia. These disturbances are often the result of stress, either physical, psychological, or both. The brainbody stress systems involved in pain and emotion are interconnected. Activation of any part of this system through physical or psychological threat triggers the body’s stress response. When the stress system is activated too much or for too long, functional symptoms may appear. This chapter outlines the best ways to communicate with patients and families about these functional disturbances. It outlines the role of interdisciplinary treatment, involving physical and occupational therapy, cognitive behavioral therapy, and mindfulness interventions, which is integral to successful recovery, along with guidelines for delivery of care.
https://connect.springerpub.com/content/book/978-0-8261-8449-8/part/part06/chapter/ch26

 

Exactly how much BS is there in medicine? If they can go ahead with this stuff, there's basically no limit to what they'll accept. There's zero concern with validity here, the "disturbances in neurophysiologic regulation" is the new "chemical imbalance" and the rest is just random speculation without any actual basis. It's still the exact same model Freud came up with.

So if complete, and I mean really total, BS like this can be accepted... exactly how much of medicine is either complete BS, or mostly BS? Because the hard questions have to be asked, it's guaranteed that the answer to this is terrifying, seeing how easily this astrology-level stuff gets praised and gushed like it's the freaking Humours in the 18th century. In a sense this is basically the legacy of the Humours, it's the same generic stuff with a few updated ideas.

Anyone who can bullshit like this can bullshit about anything, they've already made the choice not to bother with validity or making any sense. It can even hide millions of ruined lives in broad daylight, so there is basically no size or limit to the cruelty it can impose, it's never too much. As long as hospitals aren't bothered, they're not bothered at all. The only goal is to deny any actual help, derived from a belief that it is cheaper, even though it isn't, and explicitly trades lives for money in what can only be described as an evil choice.

Because as this has become a widely accepted standard, there is no way to know whether what a physician says is true. It may be, but they're also completely OK with total BS if it feels true. So it could be true. Or it could be false. It all comes from the same source and is expressed as equivalently valid. There is no way to trust anything when lying with complete BS is an accepted standard. Medicine is the only post-truth expert profession. What a freaking nightmare.

 

That's the nature of a con. It is about expressing excessive confidence about the perfection of the product. And ultimately it's that confidence that is sold, the mirage of a miraculous product. There is no product, just the promise of an outcome. It's based on the shadiest sales tactics and no one who runs a con is unaware of it.

But you can't run a con without expressing infinite confidence and making completely unrealistic promises. And so here all they have is that confident expression of a miraculous outcome. That's all this has ever been, and why they make it about motivation. Because there is no product, only a lie, and someone who benefits from it.

 

I am so confused and upset by this whole weird interaction. Mostly, I don't understand why the FND patients are getting offended when Putrino says LC isn't an FND. Why would they be offended that other people don't have their disease? I am not offended at the people with MS that I don't have MS and really, that's a lot what this argument looks like to me.

I listened to @dave30th 's interview with Dr. Putrino and I read the comments by FNDPortal. I really, genuinely didn't hear Putrino say the things that FNDPortal said he did. My feeling is that this is all a misunderstanding and misinterpretation. Feelings run high when you have a stigmatized or misunderstood disease and I think that is interfering with logic in this case.

So my (admittedly a bit uncharitable take) is the FND Portal is strawmanning Putrino, then going to battle for the honor of his illness all based on a misunderstanding. I really wish this wouldn't happen because there are so many real conversations that need to happen, so much understanding that could actually be advanced. I think both Davids are doing their best to advance this understanding and help our community.

I understand the need for patient advocacy, sometimes against healthcare people who do not understand or who are dismissive against our illnesses. But to need to get legitimacy for your own illness by claiming that other people have it, is not a tactic I agree with. Of course, a person can have more than one illness at a time, but that makes it all the more imperative to differentiate which illness is causing which symptoms, to understand the underlying mechanism of each illness separately (even or especially when they may have some surface characteristics in common), and to make sure everyone gets safe, effective, and non-stigmatizing treatment. Isn't that what Putrino is doing?

 

To ask an open question - because some of these orgs aren’t always actually ‘just patients’ who don’t have conflicts of interest etc do we know specifically who it is behind these rather than just ‘their claimed cause’?

It wouldn’t be the first illness or cause where some of those who represent them claim to speak for all when reality is more mixed when you get to the majority just living with it.

I did hear the video focusing on the word ‘just’ being pulled up and Putrino answering that well as him having been made to repeat that phrase as it was what whoever had said: “LC is just FND” so inferring those words came FROM him was inaccurate - although I suspect he will be wise of being walked into that trickery sophists tend to use in future.

and of course that then gets deliberately snap-shotted out of context and winds up others because it sounds like something that came from a different place with the ‘just’ having different meaning( he said people have ‘other things than’ and the repeaters inferring somehow it meant ‘a minimisation of’ by the word just).

It is all very sad for the genuine people getting used a pawns by all this game playing that causes hurt I agree it is very sad and seems to be a common tactic that reminds me of populism type facts and trying to stir up ‘controversial’ where it wouldn’t exist if it weren’t for such stirring etc perhaps?

 

If anybody, FND patient or otherwise, wants to understand why I am so concerned about FND in relation to ME/CFS, here is an excellent example.



In response to the NIH's Walter J. Koroshetz posting on Twitter about the ME/CFS Research Roadmap Working Group, Alan Carson, one of the leading proponents of FND, posts "Bizarrely unbalanced group - the only effective treatments to date are CBT and GET but not a single expert in those areas nor a single CL psychiatrist or mainstream health psychologist - i predict vast promises and exactly zero patient benefit will emerge from this".

For me, this is further evidence that for him ME/CFS is an FND, and obviously if he had his way we would continue trying to progress down the GET and CBT blind alleys, while patients harmed fall by the wayside.

Original tweet here

 

We have encountered Liz Carlson a few times already. Her bio is "Sharing CFS and LC recovery stories on my blog & YouTube @ Heal With Liz. Mirror dancer.".

 

"Bizarrely unbalanced group - not a single flat earth conspiracy theorist, climate change denier or psychic healer."

 

Luckily, Carson blocked me quite a while ago so I can't see his blatherings. But I'm curious so will find the thread. David Perez made a similar comment to Koroshetz

 

Yes, he argued that the committee should have enlisted experts from “other” brain-mind-body disorders, which categorizes ME as a brain-mind-body disorder. Curious why Perez is getting involved in this effort. My guess is that he, like Carson, sees the biomedical approach to ME as threatening to continued hegemony of psychiatry in FND space. Either way, I’m extremely disappointed that the MGH clinicians/researchers friendly to ME are allowing the epistemic land grab.

 

Carson’s statements are especially false and misleading because CBT has not only been conclusively demonstrated not to work for ME/CFS (PACE) but also for FND. The CODES trial for FND was a PACE-like effort led by the usual KCL crowd and the primary endpoint was negative despite the huge sample size. It was negative because they arrogantly chose an objective outcome measure (reduction in the number of nonepileptic seizures). Of course a host of crappy unblinded self report questionnaires were favouring the CBT group as you’d expect due to bias.

 

Of course Carson would never respond to these criticisms and instead issue unsubstantiated accusations of “harassment.” His initial comment is especially brazen in light of NICE guideline amendment and CDC withdrawal of these recs

 

Has Alan Carson ever been known to complain about groups discussing FND, ME, or Long Covid which were 100% psychiatric/psychological/mental health orientated?

Edit : Just wanted to say that this post was written with tongue firmly in cheek.

 

He would find that very balanced, so unlikely.

By balance he doesn't mean 50:50. He means 100% his thing, the conversion disorder is mutually exclusive with a scientific model. It can't compete, it conquers.

But he's probably right about this program yielding nothing, all entirely because of the supremacy of the BPS ideology making it impossible for scientists to follow the evidence because it leads them to a forbidden path. So they're getting everything they want and they still hate it. Everyone hates it. Now that's balance.

 

Indeed and I think the only and obvious coordinated reply to this silliness is to firmly note that he is showing how out-of-date he is with his knowledge if he believe this inversion to be the case.

I do think that people reinforcing, continually, that those who still claim CBT or GET to be at all effective and not old, tired, ineffective, and they had 30yrs of trying, damaging paradigms is really important. As this bunch are somehow trying to make that 4yrs Nice process and then new guideline in 2021 disappear - and the fact they say these things should just mark them out as the old out of date, should be out of the business, people that they are.

Every sector and business has them, especially medicine I suspect and people can relate to such people being really prevalent and they've all met someone who's met one: like going to a really really old GP who still assumes old wives tales like women just need to not work and stay home with the kids and they wouldn't be ill: everyone just replies and wonders why and how they are still being allowed to do the job.

 

Yes well given the area has people who suggest it is essential to diagnose those who have Creuzfeld-Jacob disease with FND in their final months leading up to their death (EDIT: without/instead of looking into and finding they have Creuzfeld-Jacob when maybe it could have given the some time to make arrangements or say goodbye etc) I imagine another illness-group who dare to suggest they mightn't benefit from being misdiagnosed with such nonsense just to inflate the bottom line of useless therapies might threaten the 'everyone can benefit' theme of lie?