Functional Neurological Disorder is a Feminist Issue 2023, McLoughlin, Chalder et al

FND is a common and disabling disorder [...] described as a multi-network disorder involving abnormalities within and across brain circuits implicated in emotion processing, attention, interoception, speech, motor control, and sense of agency, among other functions.

Furthermore, functional and structural changes in the brains of people with FND have demonstrated evidence of increased connectivity between motor control and emotional processing areas.

So what is this functional neurological disorder you're all writing about?

Descriptions of clinical presentations of the disorder we presently call FND are remarkably stable geographically and historically. This is an important point to highlight because despite a waxing and waning interest by clinicians and researchers, the clinical presentation of FND does not seem to have changed.

So massive shifts in people's living context across countries, societies, cultures, through a two century+ rise in civilisation cause no variation in a condition that is caused by the way people think, perceive and process their world? Huh.

On the very minor end of 'things wrong' —

The terms used in these historical descriptions vary – hysteria for example is used as a broad classifier that encompasses heterogenous presentations, some which would be recognisable as FND to a modern reader.

Heterogenous means "different or foreign origin".
They probably mean heterogeneous, which means "structurally different" or "diverse".
 
In one breath they say that people with FND need better care, but they also seem to want to reduce investigations that might identify other causes of the reported symptoms.


They include this quote in the paper. Which illustrates just how limited their understanding is. Of course things that we think about ourselves can be used to diminish us. Indeed, we can end up diminishing ourselves before anyone else gets the chance if society is set up to encourage that.

Encouraging people to believe that they would not be ill if they just thought differently is a perfect example of how someone can be diminished by what they accept - some can be diminished to the point of actually no longer being living. Whole diseases affecting millions of people can be so diminished that they are scarcely recognised and desperately under-researched.

I find the inclusion of quotes from Audre Lorde and Margaret Atwood (We lived in the gaps between the stories. The Handmaid's Tale) incredibly distasteful given the harm that at least some of these authors have inflicted on women, not just their patients, but on the general impression of women. The whole BPS story where people, especially women, are taught to negate their own experience of the world would fit very neatly in an Atwood dystopia. It really is as if a public relations firm has provided advice on how to DARVO, on how to confuse a message.

The only positive aspect of this paper is that the authors seem to be pleading to be taken seriously, to be accepted by their medical peers - and so perhaps they are not at present. To the authors, I say, learn about good practice in experimental design and find some real evidence for your treatments. If you can do that, then respect will be due.

"We call for.."

A manifesto then. At least they've started to be honest about what they do then. Oh, except they haven't because it is a 'hand over to us' but without details of the what.

The lack of insight is demonstrated by that quote you've picked out and the fact the authors can't see what they've written around that is 'why won't these people know their place' equivalent. With some manifesto of their own personal psychology trying to infer them not understanding the answer to that isn't their own thinking problems.

We need to be allowed to say the line that both women, and people who trot out a self-label for themself of 'feminist' can well be some of the worst misogynists towards women, certainly specific women. It's a weird concoction of terms some seem to get confused, but not really if you think that certain types just have irrational contempt for certain women, if they get the opportunity to get away with it, and that tends to be reflected in what they do and say about them whatever they like to think of themselves of re: other stuff.

Sticking a label on another group without proof and suggesting insinuations about their personality whilst not striving to allow them to speak for themselves and for you to hear them is basically that. So anyone who says 'these women' is a good clue. Or who thinks they can theorise for someone else without ever caring to know them. It's as objectifying as anyone else who might do that.


And I find Margaret Atwood and her elucidation of just how certain women actually prop up that hierarchy in the Handmaiden's Tale a picture that is too familiar and obvious when you see it in real-life for even those doing it to deny. Yes there is one aspect that is different, which might be picked on as distasteful but sorry the rest - given the author researched it on societies that build this way around contexts that don't involve handmaiden's specifically - is relevant to draw on.

The language in that abstract is chilling to me. And that is no exaggeration. A request for 'permission' to do unto others "the care they need". Different to promising to get behind scientific research to find out what actually the condition is to make sure you provide something actually useful. But I know the context from which it comes as 'a plea' and from whom and wat they've been involved in previously etc.

Bit blinking weird and unoriginal that suddenly this author is referenced within weeks of me mentioning her (it was the Testaments actually - which is more incisive as it shows how such powers etc build). It does feel like Darvo as simply as someone not liking it when the bell rings too close and only has the intellectual reaction of trying to point the finger in reversal before anyone else does at them.

I'm guessing this line will be cut, but yes there is a certain character that I am actually often reminded of being in the world where I do read 'the latest from' and I do think Atwood nailed the psychology and the journey to that and why beautifully so would hate to think such important insight would be lost due to context being seen as distasteful, with the large caveat noone should be cribbing one-liners like a juvenile from it given the critical thinking and self-reflection etc it is supposed to provoke.

Agree I'm bored with individuals who think re-hash gravy train of 'we only want the best'; infer [patients/objectors] deluded; and then spend rest of article not very thinly veiled trying to build mind-game ramparts lest someone disagree with your 'big wisdom' of trust me because I've got myself a badge with a loveheart above [insert disease name]

Surely even half-interested social-media-types have moved past the days where just saying you support 'better non-specific x' was seen as a good thing lest you were inadvertently liking someone/thing underneath that mantra who was doing something different to what you assumed when the detail was unbundled. So you'd think there'd start to have to be more in these articles these days.
 
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IIRC, Atwood has said that she derived The Handmaiden's Tale from history. Not in the more direct and only somewhat fictionalised sense. But rather in the more general sense that none of what she was warning about was historically unprecedented or fictional, that this kind of stuff had happened before, and would happen again if we were not careful.

Perhaps more like 1984 by George Orwell, than The Crucible by Arthur Miller.
 
IIRC, Atwood has said that she derived The Handmaiden's Tale from history. Not in the more direct and only somewhat fictionalised sense. But rather in the more general sense that none of what she was warning about was historically unprecedented or fictional, that this kind of stuff had happened before, and would happen again if we were not careful.

Perhaps more like 1984 by George Orwell, than The Crucible by Arthur Miller.

https://lithub.com/margaret-atwood-on-how-she-came-to-write-the-handmaids-tale/

I might not have said it quite right then - the exact story itself is obviously fiction, but in creating that and how it could happen and the details and elements, a number of interviews that I have read and seen from her note quite in-depth study of other cultures, events, points in history and regimes interweave in the lead up to and during changes etc. and the mechanisms, tools and features often involved (symbolism, ideology and so on)
 
Thanks for that, @bobbler

From the link [bolding mine]:
I made a rule for myself: I would not include anything that human beings had not already done in some other place or time, or for which the technology did not already exist. I did not wish to be accused of dark, twisted inventions, or of misrepresenting the human potential for deplorable behavior. The group-activated hangings, the tearing apart of human beings, the clothing specific to castes and classes, the forced childbearing and the appropriation of the results, the children stolen by regimes and placed for upbringing with high-ranking officials, the forbidding of literacy, the denial of property rights—all had precedents,...
 
so would hate to think such important insight would be lost due to context being seen as distasteful, with the large caveat noone should be cribbing one-liners like a juvenile from it given the critical thinking and self-reflection etc it is supposed to provoke.
Just to clarify in case it is needed, I found the use of the Atwood quote in this paper distasteful, maybe that's the wrong word, I found it incredibly wrong. Because Atwood has said the opposite to what people like Chalder have advocated. To co-opt Atwood's credentials as a feminist and social commentator to the cause of legitimising the concept of FNDs (which so often has included ME/CFS), well, it's a bit mind-boggling in its brazenness.
 
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Just to clarify, I found the use of the Atwood quote in this paper distasteful, maybe that's the wrong word, I found it incredibly wrong. Because Atwood has said the opposite to what people like Chalder have advocated. To co-opt Atwood's credentials as a feminist and social commentator to the cause of legitimising the concept of FNDs (which so often has included ME/CFS), well, it's a bit mind-boggling in its brazenness.

Yes my nuance in writing is never quite right so sorry if it came across as directed at you, it wasn't intended, was more musing outloud meaning I got the tone wrong, - I agree it is distasteful how they have tried it on here I think too, and I always feel anyway I have to be cautious when mentioning the book because of certain contextual aspects one needs to acknowledge aren't the same.

But I think they want us to say it in blanket terms so that they can stop us from citing the parallels that it can sometimes be hard not to notice - I'm very cynical about their drawing on its usage (and thinking it's can't lose for them because if someone calls them on it then they'll just have dirtied that as a reference). I think that is absolutely something in the DARVO-land playbook. And this reference is one that really chimes with me for the world the biopsychosocial bunch created for me - I just need to get the acuity to be able to dance that 'apart from' well try and make sure I don't get that pulls face at me because 'isn't it about handmaiden's' type response nailed I guess.

I really don't get quite how they thought they could invoke that one tbf - the only stretch I could see is someone doing word-association and it goes from 'let's invoke feminist' (cos its a buzzword/can be used) ... so 'handmaids tale is a feminist TV series' type thing (and pertinent due to recent events - ergo, your point might be correct but even more darvo or really missing the dischord to my mind given Roe V Wade is 'control over their own body and being best-placed to make choices that involve it' as well).

Let's be honest their aim tends to be to want to distract to an argument on anything other than them missing the actual science part, or even logical what, why how. SO I can see that nailing a snappy one-liner to be repeated for advertising emphasis each time they do might be worth the time on this particular one.

Those writing this would love nothing more than to get publicity by ending up in a debate on it via twitter or something, because their marketing messaging is clear to brand it based on 'feminism' so any mention of that with their names and FND is basically exactly what they'd aim for/like as a result of this 'academic paper'.
 
it's a bit mind-boggling in its brazenness.
Because they don't care. And why would they, given they just keep getting away with, and indeed rewarded for it.

How many of their senior ranks have lost their clinical, academic, or advisory jobs, or even had a demotion, over any of this?

Their behaviour post-NICE, including with Long Covid and FND, has made it abundantly clear that they will never concede anything, beyond some superficial tweaking of tactics and twisting of language for practical public relations purposes. Their fundamental beliefs and claims and strategy have not changed one iota. They are not for turning.
 
Just an encouragement to anyone who felt able and 'qualified' but this monstrosity really demands a feminist/patient response, perhaps as a guest post on Trial By Error if the good offices of @dave30th were to assist/support ?

What like 'just because it is a new name you are trying to develop to resurrect hysteria/neuresthenia as a 'transdiagnostic' for women doesn't mean that action or condition is either help or feminism'

Just reading through the document it feels like: here is the history of how women have been done over by misogynistic attitudes, particularly with regard to health and using fake psychosomatic buckets for them - let's repeat it, because surely I wouldn't dare mention all of this if I was doing the same.

And a link to Chalder's 'how to trick the patients into thinking you aren't just bunging them in a bucket where you think it is in their mind and behaviour' video: https://www.s4me.info/threads/old-maudsley-gp-training-video.32271/#post-464790

I guess even then they were smart enough to have picked a male actor as the patient.

ON a re-watch what I'm quite shocked by is how many times she says the word 'disability'. More than would be natural - and as someone familiar with marketing I noted the emphasis, the regularity etc as you would aim for at least 7 times of repetition (of an identical, specific word or phrase said the exact same way) for advertising effectiveness. Even in contexts where you'd think words like debility or other more specific symptoms would have come in that exact word is re-iterated. Obviously the same with beliefs, but noone is shocked there.

And then her latest transdiagnostic stuff

- so people can notice the formula and same end-result, little real interest in the medical being looked into etc. Here's a bucket for me and my treatment, just lump and dump, we just want to help, so more must be
 
Perhaps a letter to Margaret Atwood would be worthwhile?

Susie Orbach, who as author of Fat is a Feminist Issue is referenced in the title, might get grumpy too. Psychodynamic psychotherapists often complain about CBT being used as a panacea. They don’t like the idea that trivial affirmations are enough to change behaviour, because they want patients to acknowledge the causal subconscious issues, and they don’t like patients being referred to easily-trained, not-too-bright, youthful clinicians, because qualifying as a psychodynamic therapist is gruelling and expensive, and they charge high fees.

Orbach herself features in Nick Duernden’s meretricious book about adventures in BPS therapy for ME/CFS (which has a thread on it here https://www.s4me.info/threads/review-cfs-book-by-nick-duerden.7021/#post-127634), as the voice of doubt about the value of CBT.
 
Agree although in this case I would use the term 'colonising' rather than 'co-option' - it's a total claim, there is no enemy because there is no place in which an enemy can have legitimate identity. The authorial 'feminists' are (in their terms) speaking for all women and any disagreement can be axiomatically dismissed as anti woman. I'm not sure that this is a consciously Machiavellian colonisation - in some ways that would be less worse than my sense that this staking of claim is borne entirely out of entitlement, they really believe that they are carrying the feminist flag as appointed by fate.

Yeah it felt all of the above when I looked at it, it's like a dump of notes they got the PhD assistant to trawl up from internet sites in 2 days (possibly to 'mimic' anything people like us might want to touch on). My only comfort is that I have ME and I'd manage to present something better than that given enough time to do that cut and paste job. And who wants to open a word doc that might have a virus. It's a bit weird.

So I think the work and the aim was just having something underneath to justify being allowed to release their press statement (which is the most cynical thing I've seen in a long time), sorry 'Abstract'

EDIT: I've just noticed the date of release 26th Feb 2023 (Sunday which is unusual) was ten days before International Women's Day (Wed 8th March 2023). Which just confirms my thoughts rather

Baroness Monaghan and so on (it's good we are all fine with distinguishing people by how they act and speak for a group).
Brain struggling but who is the Dame/Baroness/House of Lords lady who has been really good on highlighting the scandals in women's medicine e.g. Mesh etc.

Anyway - she does some v good speeches and I think that is one retort:

"this is what people who care about women being mistreated in healthcare do and say, and the evidence and action they put behind it [link to video]"

and then I'd really like to reply with

"... and this is what you get when some people want to create a lump and dump transdiagnostic label for their supply-led business, and decide they are entitled to use that term as a buzzword one day just because they themselves are women in attempt to assert 'they know what's best for them' #cynical"

"Shouldn't the primary concern be to hear directly from the [women] all patients who are actually having the horrendous symptoms about what research and treatment is or would be actually helpful.... and let them tell us if these salespeople are either help, wanted... or feminists (what's that got to do with the price of eggs on this occasion?)"
 
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I'm trying to read the whole article, not just the abstract.
There are 42 signatories, the lead authors are:
Caoimhe McLoughlin*, CCBS, University of Edinburgh and NHS Lothian
Ingrid Hoeritzauer*, CCBS, University of Edinburgh and NHS Lothian
CCBS stands for Centre for Clinical and Brain Sciences
https://www.ed.ac.uk/clinical-brain-sciences
______________

I'm not sure what to think now. There are some parts of the article that I agree with - for example the way people with FND diagnosis are badly treated by some clinicians, similarly as with ME/CFS. And that FND needs more research funding.

I have no expertise on FND so can't comment on whether their hypothesis on causes holds water:
Furthermore, functional and structural changes in the brains of people with FND have demonstrated evidence of increased connectivity between motor control and emotional processing areas [40, 42-44]. These laboratory findings support a conceptual understanding of FND as a result of glitches in the brain’s predictive processing system. The brain is thought to represent Bayesian network, with prior experiences and beliefs assembled to form predictive models (‘top down’ sources of information) about the world. This allows rapid responses to an ever-changing environment. Sensory information (‘bottom up’) is constantly being fed into this predictive model to test and enhance it in order to minimise prediction error. This allows for adaptive responses to changing environmental circumstances. However, the ‘top down’ prediction weighting can be increased by attentional focus, mediated by the salience network and limbic system[45, 46]. In FND it is hypothesised that abnormal predictions about movement, strengthened by abnormal self-directed attention overwhelm sensory evidence to generate movements that have not been consciously planned, and thus occur without a normal sense of agency (volitional control)[47]. Evaluating these models, FND challenges dualistic notions of brain and mind.
Nor can I comment on whether prior trauma such as sexual abuse predisposes to FND, or whether the treatments they mention without details are actually effective.

I think my main concerns are more about what we've seen coming from those whose names are familiar among the signatories. The idea that Chalder or O'Sullivan see their work as supporting feminism is horrendous.
 
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for info
Functional Movement Disorders (FMD) are a subset of the far-reaching umbrella term of Functional Neurological Disorder (FND). The DSM-5 refers to FND as ‘Conversion Disorder (Functional Neurological Symptom Disorder), with abnormal movement’ (American Psychiatric Association, 2013) and the ICD10 refers to FND as ‘Conversion Disorder with Motor Symptom or Deficit’ (World Health Organization, 1992).

Patients who present with functional motor symptoms can report limb weakness, gait disorders, functional paralysis and/or disordered movement that presents as jerks, tics, myoclonus, focal or global dystonia, fixed postures and tremors (Galli, Béreau, Magnin, Moulin, & Aybek, 2020; Gilmour et al., 2020b). These symptoms are defined as functional when they are not related to an underlying neurological disease (Gelauff, Stone, Edwards, and Carson, 2014b).
https://www.sciencedirect.com/science/article/abs/pii/S0272735822000319
 
I find the inclusion of quotes from Audre Lorde and Margaret Atwood (We lived in the gaps between the stories. The Handmaid's Tale) incredibly distasteful given the harm that at least some of the authors of the FND paper have inflicted on women
They actually did that. I mentioned the Handmaid's tale without seeing this, simply from how the situations are identical.

It's hard to accept that they don't understand that there is some overlap, but, like in the Handmaid's tale, they truly believe it is for the greater good and that they have the right, absolute, to impose their will to achieve the ends they seek. Ends that they seek through immoral means.

One thing I noticed in psychosomatic circles is the complete lack of self-awareness, but to actually refer to it this way, from a position that is basically identical to the horror of the Handmaids in the novel, is truly astounding. It feels more like bragging, like the quote in the Enron movie: "they're not confessing, they're bragging".

Evil is banal. It puts on a smiling mask while it robs you of everything, not because it wants to harm you, but simply because what they want happens to run through you. Under their eyes.
 
The only positive aspect of this paper is that the authors seem to be pleading to be taken seriously, to be accepted by their medical peers - and so perhaps they are not at present
But they are taken very seriously. Not the patients, which is the pretense here, but the conversion disorder is taken more seriously than at any time in history. We are in the golden age of this ideology, it's never been more influential or used in real life.

And the medical profession will never see the conversion disorder as something that is their problem, they will never see the patients as anything but pests to be thrown down the drain. Because the conversion disorder is not even a real thing. It's pseudoscience for pseudoillness, as far as they are concerned.

IMO this is simply part of the big lie, to pretend to take this seriously, while making sure it never happens. This is as absurd as heavily defending a traditional caste system while pretending to advocate for the poor people on the wrong end of it, it's fully mutually exclusive. The insincerity is dripping.
 
This is as absurd as heavily defending a traditional caste system while pretending to advocate for the poor people on the wrong end of it, it's fully mutually exclusive.
"I sit on a man's back, choking him, and making him carry me, and yet assure myself and others that I am very sorry for him and wish to ease his lot by any means possible, except getting off his back."

Leo Tolstoy, Writings on Civil Disobedience and Nonviolence
 
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This paper is such a perversion.


FND diagnoses are stable partly because, even when the person is later conclusively found to be suffering from some catastrophic neurological or endocrinological disease, the people who initially diagnosed them with FND continue to claim that there is a 'functional overlay'. I can think of at least two published case studies where this has been the case and surely many more must just be quietly swept under the carpet. Another reason is because people given this diagnosis will often, sooner or later, stop seeing the medical professional that gave them that diagnosis, seeking more useful care elsewhere. Thus, the FND physician never gets to appreciate how inadequate their diagnosis was.


Hearing this sort of thing (speaking about their quotes you have in your post, and have requoted the first below - which is indeed a peversion) my only 'coping mechanism' - and I thank goodness it exists so I know the world isn't totally 'gone' - is to quietly sit and think of Madeleine Allbright's rightly well-known phrase.

All of course there is 'not supporting' and then there is what could only be termed as another level beyond that.

The terms used in these historical descriptions vary – hysteria for example is used as a broad classifier that encompasses heterogenous presentations, some which would be recognisable as FND to a modern reader. This was a diagnosis much more frequently applied to women than men, and some sociologists and scientists have opined that the diagnosis was used as a “patriarchal tool” to silence or ignore complaints of women[18]
We, a group of clinicians and academics who research and treat patients with FND, recognise that many people do feel ignored or dismissed upon receipt of an FND diagnosis. Some perceive that the diagnosis of FND has been used euphemistically to denote an illness that is imagined, or worse, feigned[19]. Labels such as “psychogenic” or “pseudo” may have been used to dismiss or deny the disabling impact of symptoms, and may arguably be used as a reason for inaction from healthcare professionals. That said, when appropriately diagnosed, we do not agree that FND is any longer a tool used to silence women or dismiss their symptoms.

I do think we need to keep including the link to the video of Chalder training GPs - and any other factual evidence that brings alive what these individuals actually do as their 'main earner/reason for being': https://www.s4me.info/threads/old-m...MkUfjcmbuOlDv-6cF6REZg_4IOeEJH4iw#post-464790

As their focus seems to be claiming that when someone says who they are, they try and pre-bunk by suggesting such frank factual statements would be terribly wrong somehow. I say if you are going to be that and do that then you should at least own it, and the consequences you caused to others. In any normal world with normal people. Rather than keep burying the aim and facts of what you are doing under more and more layers of 'speaking between the lines', 'wink wink nudge nudge'.

The interesting thing about the video is that whilst history makes it clear what she is feeding as a bigotry, it is also plain obvious she is training in manipulation. Which is rather relevant to what is coming through now as a mere reiteration of the gravy train.


Who are they bartering with anyway in all of this article, that what they really did and who they really are somehow isn't that? Themselves and their own conscience as they still want to continue to do it but somehow self-delude it's for any 'good'?

This is as far from a mea culpa, come to Jesus moment as one can get. Though it is a classic reaction in some when they are allowed to be that way. Rebranding doing the same thing, and acting like you are faux-offended, faux -we are different even though we are the same people, isn't being less misogynistic at all. It's just 'not getting it'.
 
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