Functional Neurological Disorders - discussion thread

Apparently, due to personality disorder.

 

I know it is well expected for practices to change over time, but the way I’ve experienced the changes to the healthcare system, I like to refer to it as pre-recession primary care and post-rescission primary care.

Before austerity measures took place I remember GPs’ would diagnose anxiety and depression after asking a series of questions about how you feel, etc. such as, if you are still experiencing the same level of enjoyment out of the things you once did, etc. then proceed with giving you a prescription for low dose antidepressants if your answers led them to believe you are depressed. Since austerity, the introduction of the fit note, etc. I’ve noticed, for example, if you say you've been experiencing pains in your chest, GPs now say it is most likely anxiety on sight, without even prescibing anxiety medication and totally ignoring physical causes. It's a bewildering experience.

My realitive has recently been diagnosed with an autoimmune neurological disorder by a neuroimmunologist, but at first she was told the crippling pain she was experiencing could be caused by anxiety. She had to request her own referral to the neurologist.

Edited: for clarity.

 

Richard Sykes was the one who sent Simon Wessely a draft version of the new guidelines for "CFS" from the Department of Social Security end 1991/January 1992.

According to Sykes himself (when he was coördinating the CISSD project) describing his background in 2009:

"The first[background factor] was previous work as director of Westcare UK, a Bristol based charity for people with CFS/ME which operated from 1988 to 2002 and then merged with Action for ME. It adopted a biopsychosocial approach to CFS/ME and provided services on this basis."

 

I'm replying to a reply from 2020, but just wanted to point out that research by Professor James Malone-Lee has moved things on a bit with regard to testing for and treating UTIs. Unfortunately I don't think the NHS has taken it on board - it would cost a lot more than the "five days of antibiotics then tell the woman she's mad" approach. But Malone-Lee has a private clinic in Harley Street that apparently helps a lot of women. So there is help for those with money.

https://www.theguardian.com/society...ief-for-women-with-chronic-life-changing-utis

 

An amusing exchange:


Link

 

I don't think so. I'd say VanElzakker just seems to have a pretty low tolerance for charlatans.

Edit: added a missing word (pointed out by Peter below).

 

Do you mean ‘pretty low tolerance’? I often miss out the key word in a sentence.

 

Van Elzakker would have more impact if he got his facts right. The pathology of MS was known decades before imaging could show it in living patients, maybe a century. It was probably thought to be due to an imbalance of humours in 1500 but who cares?

 

There have been suggestions that sexism was a significant issue in MS prior to scans.

Previously you were a hysterical woman.I think Unrest touched on this .

In literature the uptick in female diagnosis is noted post scanning with suggestions of epigenetic triggers, vitD levels during female mothers pregnancy ..... little reference to the psych dustbin.

The subsequent exploration of the differences in male / female immune systems once the ratio was recognised has no doubt helped general understanding .

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3707353/

Eta link Paper touching on differences in sex/ sexism

 

There are lots of complexities around the diagnosis of marginal cases but they don't alter the fact that Van Elzakker's comment is nonsense. No medically qualified person regarded MS as a hysterical illness in my lifetime.

 

It's a moot point considering the difficulty is in identifying the disease, and most patients could not get properly diagnosed before technology like MRIs made it easier, and were routinely dismissed as hysterical, or whatever each physician happened to fancy at the time (the idea of fashionable diagnoses is so obviously projection but that's a different issue). It still happens routinely today, the point in time at which 90%+ of people suffering from MS were dismissed and never found an answer is barely a few decades ago, probably right around the invention of MRIS, frankly. And of course the point at which 100% of women with MS were dismissed is much closer in time.

In a way it's a similar play to how some physicians today consider post-viral illness with a confirmed lab test to be valid, while being completely dismissive to identical cases that simply lack that validation, which simply frees them from having to make a decision they struggle to make. Even though of course what they consider valid is mostly wrong anyway.

But there's also the issue of "medically qualified person", which is, uh, very flexible. Sharpe, Wessely and the rest are technically "medically qualified" and it means as much as police badge in a box of breakfast cereal deputizes someone to be a law enforcement officer. And of course they all would have been strong proponents of a psychosocial model for most cases of MS, if not all, because there's always that gigantic loophole of a "functional overlay", which is actually still happening with MS.

I have seen a few old papers and articles talking about MS. Actually VanElzakker shared a few to make his point. They very explicitly dismiss it as hysterical paralysis, it's not in the least bit subtle and frankly I think your version of events is probably historical revisionism, medicine cleaning up its past failures by misrepresenting what happened. I have no doubt the sanitized, incorrect, version is what's taught at medical schools. It's clearly not just in politics and wars that the victors write hagiographic narratives of their heroism, conveniently overlooking all the bad stuff that happened.

 

I found a paper just a couple of years ago, not an old paper, of a psych who claimed that yes, its partly physical, but its still also psychogenic. Its a subset of psychiatrists who keep claiming these things as psychogenic, not usually mainstream medicine. Which is why referrals to psychiatrists can go awry. Not all psychiatrists fall for this stuff, just many of them.

One of the problems in psychiatry around this issue appears to be a silo effect. They are a closed group, claim success all over the place, review each other's papers (I call this a review circle), and basically ignore or downplay advances in other areas of medicine that might discredit them. If the diagnostic category is doubted they change the name of the diagnosis, such as from hysteria to conversion disorder or neurasthenia. Now we have psychogenic FND and psychogenic MUS.

 

I didn't read VanE's tweet to mean no one knew the pathology before scans but that people were often misdiagnosed as having hysteria.

 

The meaning seems to me quite clear - that MS was commonly called a hysterical conversion disorder.

Surely that means that people think MS is hysterical. Since MS, from its name, was obviously a pathological diagnosis in the first place it makes no sense.

What he is referring to is that milder cases of MS are often misdiagnosed, not as MS, but as hysteria - as an alternative diagnosis. That has nothing to do with the talk of hysterical paralysis of the nineteenth century. The advent of MRI has meant that people with mild or early disease are more accurately diagnosed but I doubt the difference is actually that big. MS is not difficult to diagnose clinically at least as an upper motor neurone pathology in the majority of cases.

I jut think it is hugely destructive to the advocacy case for illnesses like ME to put out misinformation about things like MS. It makes it so easy for ME sceptical doctors to roll their eyes and carry on. In fact it makes it easy for the uncommitted doctors with no particular opinion on the matter to roll their eyes and join the sceptics.

 

Yes, I can understand why it might be read that way, and it might have been sloppily phrased, but I think his meaning was clearer from the context of subsequent tweets like this one, in which he cited a study that noted how cases of MS were often misdiagnosed as hysteria despite the existence of MS as a diagnostic option:

https://twitter.com/user/status/1482500575300362241

 

What is clear to me is that the whole issue has not been thought through coherently, and nor has the duty of care to put out medical information in a manner that is not ripe for misinterpretation. I may be wrong but the above text suggests missing the point being made? If the citation is being used to illustrate the main point then it pretty much makes a nonsense of the other tweet.

MS just isn't a relevant analogy for ME because it is a pathological diagnosis rather than a syndrome diagnosis. There will be a fact of the matter, potentially demonstrable at post mortem, whether the classification of MS or not MS is correct for an individual. For ME that does not apply. A diagnosis of ME is as correct as the criteria being used so cannot be got wrong in the same way.

 

I guess I don't understand this point. I didn't see VanE reference MS as an analogy for ME. I don't think his tweets mentioned ME.

I can see the literal meaning of the first tweet could easily be how you interpreted it. But I just read it differently--as him noting that people in the past have seen the symptoms/signs of what should have been recognized as MS but rendered a misdiagnosis of hysteria. But maybe that's because I'd seen the rest of his tweets at the same time.

 

That's how I read it too

 

The Tweet doesn't reflect the nuance of the quoted source, in a way that I'd say is unhelpful. Hysteria is both a 'hot button' and a 'dog whistle' subject, you can't put it in the forefront of a comment and reasonably expect it to promote understanding.

The reference: The Emergence of Multiple Sclerosis, 1870 –1950
summer 2005 • volume 48, number 3 389 07/Talley/Final/383–95
C o l i n L . Ta l l e y
Perspectives in Biology and Medicine

https://sci-hub.se/10.1353/pbm.2005.0079

from which:

section intro paragraph

"The protean presentation of MS and the lack of definitive laboratory tests for it made alternate diagnoses likely. Physicians in the 1920s through the 1940s realized that they tended to recognize MS earlier in the disease process than had previous generations of doctors (Odell 1931;Weschler 1922).This was accurate, but it was not the case that earlier physicians saw nothing when they encoun-
tered patients with the underlying pathophysiology of demyelination—they had simply interpreted the symptoms differently. Examining several of these diseases, or nosological neighbors, in more detail explains where significant numbers of the increased number of MS cases came from: they emerged out of other disease categories."

and the entry on Hysteria

"Hysteria was another nosological category from which MS cases migrated from the 1870s to the 1950s (Seguin 1878). As early as the late 1890s, American physicians began to write about problems they were having with the differential diagnosis of hysteria from MS. As Charles E. Beevor (1898) remarked: “The diagnosis from hysteria is of the greatest importance, and it is often very difficult
and sometimes impossible.” The differential diagnosis between hysteria and MS remained difficult even for elite neurologists in the early 20th century, despite their increasing clinical acumen (Preston and Hirschberg 1903; Putnam 1903). At the 1917 American Medical Association meeting, one physician pointed out “the frequent mistaking of this condition [MS] for hysteria . . . in this condition
[MS] we make many mistakes. . . . was often forced to revise [the] diagnosis of hysteria. The characteristic striking remissions after very grave symptoms are misleading” (Crafts 1917). Physicians continued to note this problem from the 1920s into the 1940s (Barker 1936; Sachs and Friedman 1922a; Wayne and Bear 1945). In 1946, the newly formed forerunner to the National Multiple Sclerosis Society indicated that in the late 1940s, the diagnosis of MS patients as hysterics was declining (NMSS 1946). Nevertheless, Columbia University neurologist Richard Brickner (1948) still maintained that it was of concern, especially in the early stages of the disease. In the 1950s, physicians continued to diagnose some MS patients as hysterics, but these misdiagnoses had declined (Scheinker 1954).

The frequency of hysteria diagnoses in general declined gradually during the first six decades of the 20th century. Mark S. Micale (1993) has argued that hysteria did not disappear so much as migrate into a multitude of new nosological categories after the late 19th century.The most important of these categories included syphilis, epilepsy, psychoses, and Freudian psychoneuroses, and a significant share of these cases migrated into the nosological category of MS. The decline of hysteria as a diagnostic category meant that MS became an increasingly likely diagnosis in the earlier stages of the disease.This, too, gradually contributed to an increasing number of patients diagnosed with MS."

The whole article is worth reading.

History is messy, the history of medical science is especially messy. Throwing out a hot button/dog whistle partial quote IMO does disservice both to understanding medicine as it is now, and to understanding the history of medical science.