You think ME is bad - try having a "Psychogenic movement disorder"!

[A.B.]

Here is a joke:

Conversion disorder is when the patient's physical symptoms appear to the doctor as mental ones. Risk factors include secondary gains by health care providers, stress (in particular poor tolerance of uncertainty), exposure to psychoanalysis.

 

[chipmunk1]

Thanks everyone for your posts. In the interest of gathering more information in the one place, here are some of the conclusions from a recent review of conversion disorder. This is from Kaanan et al, who form part of that well-known group of UK psychobabblers, so they are very much in favour of the diagnosis themselves.

Nicholson, T. R., Stone, J., & Kanaan, R. A. (2011). Conversion disorder: a problematic diagnosis. Journal of Neurology, Neurosurgery & Psychiatry, 82(11), 1267-1273.
http://www.researchgate.net/profile..._diagnosis/links/00463527a6fe5c3c13000000.pdf

very interesting. so they admit they were wrong about most things in conversion disorder:

psychological symptoms and causes are not common
sexual abuse not common
illness gain not important

the only real requirement seems to be that your symptoms differ from what is in the textbooks and/or there are subtle and vague signs that you would not expect to see in the known condition and that can not be explained otherwise.

 

[Woolie]

@Sidereal, I just had a look at this and some subsequent studies. True, it looks like there's pretty good support for a qualitative difference between epileptic and non-epileptic seizures. But the "psychogenic" part is still an inference.

It could be psychogenic I suppose. But then I think you'd need reliable evidence of psychological antecedents, and a proper model of how the seizures related to the underlying psychological distress.

 

[alex3619]

But the "psychogenic" part is still an inference.

No, not even that. Unless the inference is "it might be true, therefore it is true". Its an hypothesis. This 'might be" inference I see so very often. I don't recall if it has a formal name. "Might be ... therefore is" deserves a formal name. It probably has one, but I don't recollect it.

Doctors fall into this trap a lot because they are taught to make rapid diagnosis, which is all about what might be according to training, data and experience. What should happen is they follow up with specific confirming and disconfirming tests, but sadly this happens too rarely in part due to lack of resources including time and money ... and availability of tests.

 

[alex3619]

Correct me if I am wrong, but can't deep brain epileptic seizures easily be missed with standard testing?

 

[Sidereal]

But the "psychogenic" part is still an inference.

I agree. I think that paper only demonstrates that epileptic and non-epileptic seizures differ in presentation (eyes open vs. shut) but that does not mean that non-epileptic seizures are non-organic; that's a leap of faith. In fact, if I recall correctly, there is said to be an increased prevalence of non-epileptic seizures in people diagnosed with epilepsy (in other words, some of them get both "real" seizures and "psychogenic" ones). Why would such a thing happen? Epilepsy already gives them "the sick role" and all the "secondary gain" they may be subconsciously craving. To my mind, this makes it even more likely that non-epileptic seizures are some kind of an organic process not captured by EEG.

 

[Sidereal]

very interesting. so they admit they were wrong about most things in conversion disorder:

psychological symptoms and causes are not common
sexual abuse not common
illness gain not important

Yes, but how many decades will need to pass before they stop teaching these fallacies in textbooks/medical school?

 

[chipmunk1]

Yes, but how many decades will need to pass before they stop teaching these fallacies in textbooks/medical school?

since 1880 we are counting 13 decades. i guess it will take a while.

 

[Woolie]

Correct me if I am wrong, but can't deep brain epileptic seizures easily be missed with standard testing?

Yes, I think you're both right, @alex3619 and @Sidereal. When people bother to systematically compare the features of classic (tonic-clonic) epileptic seizures with this so-called "psychogenic" cluster (PNES), it all becomes very murky. From
Mostacci, B., Bisulli, F., Alvisi, L., Licchetta, L., Baruzzi, A., & Tinuper, P. (2011). Ictal characteristics of psychogenic nonepileptic seizures: what we have learned from video/EEG recordings—a literature review. Epilepsy & Behavior, 22(2), 144-153.

* The "psychogenic cluster", which is often defined on the basis of closure of the eyes during the episode, are consistently different from classic epileptic seizures (including frontal lobe seizures) in two ways:
1. Closure of eyes (not surprisingly, this is a commonly used criterion for definition)
2. Duration of episode (they may be considerably longer).

But other proposed differences are less clear:

"... EEG recording alone is not sufficient to diagnose PNES: an ictal scalp EEG may show no epileptic features during simple partial seizures or mesial frontal lobe seizures, and the latter may be easily mistaken for PNES.

"... preserved consciousness, out-of-phase limb movements, absence of whole-body rigidity throughout the spell, pelvic thrusting (especially forward), side-to-side head and body turning ... However, according to one study, in-phase limb movements may also be common in PNES. ...Moreover, it should be kept in mind that the aforementioned signs related to PNES are common in frontal lobe seizures involving the mesial structures, so they have to be interpreted with caution.

"... incontinence and self-injury, especially if taken together, are highly specific for [classic] epileptic seizures, but in one series they were not uncommonly self-reported by patients with PNES. It is an established belief, as Gowers stated more than a century ago, that PNES never arise from sleep, but several authors have reported episodes arising from “pseudosleep” , and indeed, one single study reported rare cases of PNES arising from sleep.

Another confusing piece of evidence that sidereal notes is that some patients experience both types of seizures on different occasions (that is, sometimes classic ones, and sometimes "psychogenic" ones).

My conclusion: These so-called "psychogenic" seizures do seem to be qualitatively different to classic tonic-clonic seizures, but it is yet to be established whether their origin in psychogenic, or whether they reflect another, as yet uncharacterised neurological phenomenon.

What I see is a cluster of seizure-like events that have some unique properties (eye closure, duration, movement), but also share many properties with the "classic" cluster. Early psychogenic models may have biased researchers to focus upon divisions that are consistent with that way of thinking, at the expense of divisions that are inconsistent.

 

[green_monster]

Psychogenic sleep disorder

 

[chipmunk1]

http://en.wikipedia.org/wiki/Psychogenic_non-epileptic_seizures

It is estimated that 20% of seizure patients seen at specialist epilepsy clinics have PNES.

Conventional EEG may not be particularly helpful because of a high false-positive rate for abnormal findings in the general population, but also of abnormal findings in patients with some of the psychiatric disorders that can mimic PNES

Frontal lobe seizures can be mistaken for PNES, though these tend to have shorter duration, stereotyped patterns of movements and occurrence during sleep

Additional diagnostic criteria are usually considered when diagnosing PNES from long term video-EEG monitoring because frontal lobe epilepsy may be undetectable with surface EEG.

According to a study in 23 patients, there is an elevated frequency of childhood abuse, especially in those with motor involvement.

A study has indicated that the metaphors patients use are associated with repressed memories

The presence of these personality disorders, often related to a trauma in childhood, has led to researchers postulating that PNES may be an expression of repressed psychological harm in response to trauma such as child abuse. Over-emphasising these theories to patients may lead to false memory syndrome so they should be introduced delicately.

Though there is limited evidence, outcomes appear to be relatively poor with a review of outcome studies finding that two thirds of PNES patients continue to experience episodes and more than half are dependent on social security at three-year followup.

Hystero-epilepsy is a historical term that refers to a condition described by 19th-century French neurologist Jean-Martin Charcot[8] where patients with neuroses "acquired" symptoms resembling seizures as a result of being treated on the same ward as patients who genuinely had epilepsy.

 

[Cheshire]

Patients suffering from "functional" neurological disorder are in a worse position than us. The rates of psychiatric comorbidity, the ineffectiveness of psychotherapy and AD are similar to ours, many of them have a very physical trigger, many have underdiagnosed deficiencies.

BUT there is no medical research in that field, and I wouldn't be surprised if more physicians believed it's psychosomatic than in our case (the ghost of Freudian hysteria is still haunting). And finally, the diagnosis is so vague with no real name, a great variability of symptoms that it's more difficult for them to be united and support each other.

 

[Woolie]

BUT there is no medical research in that field, and I wouldn't be surprised if more physicians believed it's psychosomatic than in our case (the ghost of Freudian hysteria is still haunting). And finally, the diagnosis is so vague with no real name, a great variability of symptoms that it's more difficult for them to be united and support each other.

I totally agree, Cheshire. At least in MECFS we have numbers, so many people have experienced this illness firsthand through someone they know.

I do think we can fight attitudes to our illness better if we extend our argument to all conditions at risk of a "functional" interpretation and raise awareness of this issue. Plus, like you, I don't want any person ending up on the receiving end of a poorly characterised "psychogenic" diagnosis, whatever their illness.

I also think that a good weapon to raise awareness of this and other "functional" diagnoses is by appealing to scientific skepticism. This is often what has led practitioners and researchers to reject the idea of MECFS. "There's no biological marker so it can't be medical", becomes "then it must be psychological". But then If they could be made to see that this alternative view should not have a free ride either - and should be treated with similar skepticism - we might be going somewhere.

 

[alex3619]

BUT there is no medical research in that field,

Functional somatic disorder seems to be code for the patients to be ignored. Solutions will have to come from outside psychiatry, and by accident. In some cases the actual disorder will be diagnosed, and those patients might have research done on them. Then that research might, if they are lucking, get back to the functional somatic syndrome patients.

All such functional disorders are, necessarily, a hodge-podge of many diseases. Just run the timeline backwards, with the diseases that were removed once we understood them added back in as you go back. The vast majority are now removed. Why should we think there are not other disorders still to be removed, or that the diagnostic category will one day go the way of the trilobite?

 

[alex3619]

PS I used trilobite deliberately as its an obscure word ... one day functional syndromes will be so obscure doctors will ask "what's that?".

 

[alex3619]

This is often what has led practitioners and researchers to reject the idea of MECFS. "There's no biological marker so it can't be medical", becomes "then it must be psychological"

This fallacy has a formal name, the psychogenic fallacy.

 

[alex3619]

Here is a joke:

Conversion disorder is when the patient's physical symptoms appear to the doctor as mental ones. Risk factors include secondary gains by health care providers, stress (in particular poor tolerance of uncertainty), exposure to psychoanalysis.

Where is the joke?

 

[Jeckylberry]

Thank you so much for the intelligent and supportive comments on this thread! I read it with great interest and not a small amount of relief. I have to admit, when I first came across the thread I thought, oh god! People with ME feel sorry for me! That's telling! I know how hard they find it to get recognition. Still, it is greatly comforting to hear insightful talk about this awful invention with some form of outrage. Makes me feel less isolated.

A.B. I love the joke. I GET it. I really get it. I'd add "paroxysmal frustration" to the list of symptoms. All these gems are good ammo when I face my next episode of being discounted. I'm in a dance with the psychogenic fallacy.

From someone "diagnosed" with "functional neurological disorder" I wholeheartedly agree that this "answer" has done nothing for me psychologically, never mind physically. I've been struggling with constant overwhelming exertion intolerance, dysarthria, parasthesias, seizure-like events and ataxia since 2013 and am fighting an uphill battle to be taken seriously. I have been assured my condition is "real" but that there is nothing for it but to fully agree with it and do the physiotherapy assigned to me. If I don't improve, it's because I am not fully engaged with my diagnosis and if I do they congratulate themselves on a job well done and add my story to their accumulated evidence. I've had appalling experiences with this diagnosis. It lurks in the back of every emergency doctor's mind. During one of my muscle collapses where my vocal cords slacken and I get apnoea, I was told I was holding my breath. Anyone with fatigue can guess how hard this would actually be, especially when someone is forcing a breathing tube down the throat!

I have frequent collapses and seizure like episodes. I am known at the local hospital as having FND. Last hospital visit I was very weak and run down. I was having multiple seizure events every day. In the discharge notes they said nothing of the seizures and described my collapses as "due to knees giving way". Every word they wrote was biased towards psychological bases. Just another "pseudoseizure" - they whisper that foul word over my head. I hadn't even had an EEG and they assumed to know my brain. They described me as having a "flare up" of FND. Is that even a thing? The trouble with FND is that you can make it fit almost anything. Get migraines? FND. Fatigued? It's FND. When I suggested I may have chronic fatigue my neurologist shrugged and said it's also a form of FND. So you all have it too, doncha know. So if it describes all these symptoms, what the hell use is the term at all?

Sometimes I get tired of fighting and start to try and see it in their terms - something poor Ms A probably went through. When you hear the same old thing over and over and see a psych often enough you do start to go with it eventually, then you come to your senses and the fight is on again. So then you look even more crazy. It all just feeds into the diagnosis and they lose sight of you in the flurry of conclusions they've made about you.

Any disease at all has a degree of psychological expression. People experience worsening symptoms when they get upset, excited, happy, amorous or afraid. I've read countless times how epilepsy can be brought on by stressful events. Many describe feelings of dread or fear before a seizure. These normal emotions, and secondary emotional responses to the aggravation of the disease, are given no serious consideration in the pathogenesis of a disease. Chances are that they have impact but the reality should be that the impact is one that is no business of any medico. If you smoke you run the risk of any number of dire diseases. The doctors tell you to stop smoking. They don't delve into your psyche in order to cure what made you start. They don't bother because it's not relevant. If you need the extra help, it's up to you. Inasmuch as any disease has a psychological component that may need to be addressed, so do confusing neurological or systemic ones. They should leave my emotions the hell alone!

 

[Woolie]

I have been assured my condition is "real" but that there is nothing for it but to fully agree with it and do the physiotherapy assigned to me. If I don't improve, it's because I am not fully engaged with my diagnosis and if I do they congratulate themselves on a job well done and add my story to their accumulated evidence. I've had appalling experiences with this diagnosis. It lurks in the back of every emergency doctor's mind. During one of my muscle collapses where my vocal cords slacken and I get apnoea, I was told I was holding my breath.

Oh, that's just so unbelievably awful, @Jeckylberry! You poor thing! There are many of us here on PR that are VERY ANGRY on your behalf. We don't just want to stop the bs surrounding Chronic fatigue syndrome, we want the whole entire psychogenic illness house of cards to be pulled down.

The only way to stop that gnawing feeling of helpless anger whenever you read something outrageous about yourself or your condition is to join the fight. So please keep coming to PR and sharing your stories. I'm actually a little disheartened about how so many people with the FND diagnosis seem to just roll over and accept the explanation they're given. I think you guys just don't have the strength in numbers and the infrastructure we do here, so many people end up accepting that the doctor must be right. From what I've seen and read, your "specialists" seem to be even better than ours at lying to you, so you go off thinking the doc believes you when really they think you're a complete nutter.

The trouble with FND is that you can make it fit almost anything. Get migraines? FND. Fatigued? It's FND.

There's an idea being floated by some of these psycobabblers that all unexplained illnesses - MECFS, fibromyalgia, FND, irritable bowel syndrome, are all the same. The same crazies, just manifesting their craziness in different ways. I think that's where some of these comments are coming from.

There's virtually no evidence to support the idea that FND is caused by psychological factors, but that apparently is no deterrent to these "specialists" constantly trotting it out. Meanwhile, with all this bs going on, no-one is bothering to do any research into FND that might actually help patients. So the problem is much bigger than our individual experiences. The psychogenic approach justifies research neglect.

 

[Woolie]

Any disease at all has a degree of psychological expression. People experience worsening symptoms when they get upset, excited, happy, amorous or afraid. I've read countless times how epilepsy can be brought on by stressful events. Many describe feelings of dread or fear before a seizure. These normal emotions, and secondary emotional responses to the aggravation of the disease, are given no serious consideration in the pathogenesis of a disease.

Wanted to add, @Jeckylberry, that this is an excellent point. The sloppy logic here. Probably most people with a chronic illness feel worse if they are tired, hot, stressed, anxious, cold, hungry, etc.. MS patients often say that heat makes them feel much worse. Do we ever hear doctors going about saying that MS is caused by heat? No, of course not, its just a modulating factor. But then when it comes to so-called "functional disorders", then the thinking gets lazy and sloppy, and if any of the symptoms are worse under stress, etc., then that's just further confirmation.