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

[Forbin]

Was this a demonstration by Charcot? He used actors to put on a show. The show was the thing.

Yes, in the film it was a demonstration by Charcot (played by Fernand Ledoux). There was no suggestion that the patients were actors - but then again it was from Freud's point of view and he may not have known. In the film, at least, you can say that Freud thought he was seeing real patients - and film-goers would have thought so, too.

 

[Woolie]

@Forbin, love your Galileo quote!

 

[Jeckylberry]

Whereas in the case of FND, they invented the entire diagnosis. There's no one fighting them for it, because no one else believes in it. That might change when more people realize it's resulting in a ton of misdiagnoses of people with identifiable neurological diseases.

Now, THAT makes sense!

 

[taniaaust1]

I'm wondering if I had not ended up with a neurologist and gone to a doctor who knew this stuff, whether I would have ended up with a completely different diagnosis.

I don't doubt you likely would of got a different diagnoses. I have had a borderline personality disorder diagnoses put on me though I don't fit the history stuff for it, all cause I hadn't seen an autism expert, that being missed and people not understanding how ME/CFS can at times cause one to feel suicidal due to circumstances.. caused me to get wrong "label" of BPD.

I later got diagnosed with Aspergers which I do have but now cant get the borderline personality disorder off my records and that then affects how I'm sometimes perceived. (you get even worstly perceived from having that on your records then you do for having CFS on your records as doctors generally don't trust those who have BPD).

 

[taniaaust1]

Some eye-opening clips about FND/conversion disorder. The young woman in this clip has clearly suffered from a serious injury that's affected her movement. Doc put her on Prozac, which she says she had a major reaction to, and got much worse.

wow, how her legs shake and she cant support herself on them etc, is exactly what my legs etc do at times when I'm in a ME crash and having some kind of attack on my neurological system (and no its not related to stress in my case when rather I physically do too much). I hadn't seen a video before of someones body doing what mine does in the same way.

I find it horrific that these two young girls can injure their backs (obviously happy girls) and end up being told symptoms like this are just in their heads, just cause the medical profession don't yet understand this kind of injury. Is the medical profession so egotistic that it cant just say"we don't know what is causing your problem"

 

[chipmunk1]

Some eye-opening clips about FND/conversion disorder. The young woman in this clip has clearly suffered from a serious injury that's affected her movement. Doc put her on Prozac, which she says she had a major reaction to, and got much worse.

So psychiatric treatment makes her worse not better. .

In this next clip, we're assured that the same young woman has now "recovered" through yoga, but from the panned out shot of her walking down the road she still seems to be having difficulties. Also still can't write her own name, and only doing school 3 days a week.

I wonder what "recovered" means? Brainwashed? Having accepted her conversion disorder diagnosis?

You can see how extraordinarily strong and together these two young women are. How people can they think that either of these cases are "psychological", I don't know.

She is a hockey player. Also a history of several head injuries. Fits well in the hypochondriac role.

She recovered with EMDR, which is pretty controversial on it's own.

http://news.uark.edu/articles/12103/ua-psychologist-labels-popular-trauma-therapy-pseudoscience-

 

[chipmunk1]

Some eye-opening clips about FND/conversion disorder. The young woman in this clip has clearly suffered from a serious injury that's affected her movement. Doc put her on Prozac, which she says she had a major reaction to, and got much worse.

From the Youtube Video comment section:

Once I got brain surgery to correct the epilepsy disorder I had, I began having conversion disorder but didn't ACTUALLY get diagnosed until three years later; this year.

Do we really need bio-psycho-social-models in medicine?

 

[Jeckylberry]

I find it horrific that these two young girls can injure their backs (obviously happy girls) and end up being told symptoms like this are just in their heads, just cause the medical profession don't yet understand this kind of injury. Is the medical profession so egotistic that it cant just say"we don't know what is causing your problem"

Yes, it's hard to imagine what trauma could have caused the conversion from psychological to physical, isn't it? At that age, with that background. My psychologist says it's all relative; people's experiences are relative and each person's take on trauma is individual. So you can make something traumatic out of any troubling event. I tell you, they can't lose!

 

[Jeckylberry]

I wonder what "recovered" means? Brainwashed? Having accepted her conversion disorder diagnosis?


She recovered with EMDR, which is pretty controversial on it's own.

Huh, if everyone says it is conversion disorder, she'll have to believe it in order to recover. Nothing to do with diet, physio or yoga.

I had a friend years ago who was a social worker and did a short course training in EMDR. You just alternate sensation in either hand while getting the subject visualising themselves on a moving train seeing whatever scene arises. He tried it out on me as a kind of experimental subject. It was ok. I had some fun but it didn't change anything. Any success with it probably has more to do with you getting to see events from a distance that offers some perspective, rather than the flicking back and forth of the sensation in each hand. It's really just a fancier version of the old watch swinging back and forth that make the eyes shift.

She probably had physio and other things that also helped but that was too boring to mention. The EMDR is more of a story.

 

[Woolie]

Any success with it probably has more to do with you getting to see events from a distance that offers some perspective, rather than the flicking back and forth of the sensation in each hand. It's really just a fancier version of the old watch swinging back and forth that make the eyes shift.

Or of course, it might have made no difference at all. Some people may spontaneously improve, and attribute it to the treatment they were doing at the time. Also, if you are hopeful about a treatment, you may be more likely to notice good days and pay less attention to bad days, a sort of confirmation bias (I know I've been guilty of this before).

 

[Jeckylberry]

Yes, that's probably the best description of this sort of unrelated cause and effect. Woolie, how much do you think the null hypothesis is respected in psychology related trials? Do treatments like that actually have proper trials?

 

[Woolie]

Yes, that's probably the best description of this sort of unrelated cause and effect. Woolie, how much do you think the null hypothesis is respected in psychology related trials? Do treatments like that actually have proper trials?

No. The vast majority don't control for the sorts of biases I was talking about above.

I think when it comes to Psychology interventions, effectiveness studies are of amazingly poor quality. Only some include a control (no treatment) group, and often this control group is inadequate. It might just be a bunch of people on a waitlist for later treatment (so they'd have no expectation of recovery, and might even be a bit annoyed about being kept waiting, so this doesn't control for the placebo effect). Or it might be a "treatment as usual" group - they visit their doctor every now and then, but no change from what was happening before. This type of control condition still doesn't deal with placebo effects/bias.

I'd start to take a study seriously, if the control condition:
- required the same level of commitment from participants as the condition of interest (attendance, "homework", etc)
- provided the same expectation of improvement
- was presented to patients as positively as the treatment of interest

Some examples might be relaxation therapy, yoga, coping skills workshops etc.

Another way around the problems of bias, if you couldn't set up a suitable control condition, would be to use some sort of objective measure of improvement - for example, fitness levels, physical activity levels, attendance at work, etc. These might be less susceptible to bias. You could use measures based on the judgements of another observer (e.g., ratings of movement fluidity) but only if the observer was blinded to the treatment condition. Otherwise, again, there would be bias.

A lot of Psyc studies also exclude people willy-nilly to make their results look better. For example, they might exclude people who withdraw from a treatment early. You can imagine that many people who don't sense any improvement might withdraw early, especially if they're ill and the treatment involves a lot of travel, effort, etc. By excluding these people, it makes the results look much better than they actually are. If 5% or more of the participants withdrew, then this is a serious concern.

 

[Jeckylberry]

Thanks, @Woolie! Very interesting!

It must be hard to do a trial with so many variables. It sounds like a good idea to have measurable criteria and with the level of actual improvement determined. I'd be interested in comparisons between improvements in people with known organic illness and those with "psychogenic" ones. Could there be anything that could demonstrate that there is an organic origin of these so called 'psycogenic' conditions since the same treatments work for both? Or is that just another can of worms?

I later got diagnosed with Aspergers which I do have but now cant get the borderline personality disorder off my records and that then affects how I'm sometimes perceived. (you get even worstly perceived from having that on your records then you do for having CFS on your records as doctors generally don't trust those who have BPD).

Sorry to hear this, @taniaaust1, I understand where you are coming from. It's like trying to clear your name from some criminal charge. You get seen through the lens of that one, flimsy diagnosis that they got wrong in the first place. No one knows the circumstances around which that diagnosis was given. For me it was a very fast examination. All future visits didn't involve any exam at all. They were so sure and eager. They just shoehorned everything in, including even falsifying my medical history to make it fit.

It totally horrifies me how fast the diagnosis was made, how unshakable it is and how horrible it made me feel. I don't really even understand why. Why do I reject it so vehemently? Am I just embarrassed by an outdated stigma? Does it say something about a bad attitude towards psychiatric illnesses that I don't want my own condition to be associated with them? I ask myself these things.

I don't know if we can play the "how can such-and-such a person have enough trauma to give them FND?" card too much. It was described to me as potentially happening to anyone. There's always a comeback line. It's a chimera. The only thing you can do is to reject it entirely.

 

[Woolie]

It totally horrifies me how fast the diagnosis was made, how unshakable it is and how horrible it made me feel. I don't really even understand why. Why do I reject it so vehemently? Am I just embarrassed by an outdated stigma? Does it say something about a bad attitude towards psychiatric illnesses that I don't want my own condition to be associated with them? I ask myself these things.

No, its not that. First of all, you feel dismissed; the doctor is essentially saying that all your symptoms are irrelevant to him, they're just your way of expressing you distress and of no interest in their own right. Second, you sense in your heart of hearts that the diagnosis is incorrect, and therefore, it is the end of hope for a valid treatment (as much as you want to believe that all will be cured with psychotherapy, you realise it won't). Third, you feel judged, because unlike "real" mental illness (for example, bipolar disorder or schizophrenia), there is an implication here that you have a weakness of character, that you've somehow brought this upon yourself.

Fourth, your diagnosis identifies you as a member of the most contemptible and despised patient group on earth, the "somatisers". Patient with "real" psychiatric disorders are treated with much more dignity and respect by both the medical profession and society in general. Just look at the things the British press - and British psychiatrists - say about us. The are able to caricature us as zealots who are hell-bent on an agenda to undo the fine work of the psychiatric establishment due to our own rabid delusions and self denial. They could never get away with that if we were any other patient group. Imagine if they tried to say such things about people with schizophrenia, or cancer, or HIV, there would be an outcry! But we are fair game.

 

[A.B.]

Yes, that's probably the best description of this sort of unrelated cause and effect. Woolie, how much do you think the null hypothesis is respected in psychology related trials? Do treatments like that actually have proper trials?

Some psychologists openly write that there is nothing interesting to learn from null results.

Most psychology trials seem to make an effort to allow bias rather than trying to exclude it.

The best predictor of the outcome of psychology trial is the belief of the authors. The so called allegiance effect.

Basically most of the literature is worthless but they pretend it's science.

For fairness one has to say that biomedical research also has its fair share of problems.

 

[chipmunk1]

In the Youtube Video they talk about the MRI and PET scan being normal.

I looked up the false negative rates for some well known illnesses and see false negative rates between 5%-30 for MRI and PET in many cases.

There are well-known non-psychogenic neurological illnesses that have no neurological abnormalities other than the symptoms of the illness. Dystonia, one of the most common movement disorders is one of these.

MRI, PET etc. can be perfectly normal with these. What is even more amazing is that they do worsen with emotional stress, improve with relaxation, they fluctuate a lot and may respond to certain "tricks".

http://onlinelibrary.wiley.com/doi/10.1002/mdc3.12013/pdf

TABLE 1 Characteristics of focal dystonic conditions that have contributed in their mislabeling as psychogenic20
1. The bizarre nature of the dyskinesias
2. Their appearance frequently only on certain actions, other motor acts employing the same muscles being carried out normally
3. Their relief by certain inexplicable trick actions
4. Their exquisite sensitivity to social and mental stress
5. The failure so far to find any anatomical, physiological, or biochemical abnormality in any of these conditions
6. The belief that such patients show overt psychiatric disturbance
7. A psychopathological interpretation of the significance of, for example, eye closure or neck turning

They do meet all the criteria for somatisation they are however not viewed as psychogenic.

They were once thought to be psychogenic, were later viewed as entirely organic and then a subset got labeled as psychogenic again. What is/was also common that they get diagnosed/misdiagnosed as organic/psychogenic and vice-versa. Which means that one physician told them they had organic dystonia and the other physician told them they had psychological dystonia.

From the very first descriptions of dystonia, there has been a lack of agreement on the differentiation of organic from functional (psychogenic) dystonia. This lack of agreement has had a significant effect on patients over the years, most particularly in the lack of access to appropriate management, whether for those with organic dystonia diagnosed as having a functional cause or vice versa.

As an example of the shift away from considering any forms of dystonia as nonorganic, in Fahn and Eldridge’s etiological classification of dystonic conditions published in 1976, “psychological dystonia” was placed at the end of their list of causes of dystonia “for the sake of completeness.”21 They considered it extremely rare, “if existent at all,” and stressed the damage done to patients and families of the false attribution of dystonia to psychological causes.22 It was during that period that the third version of the Diagnostic and Statistical Manual of Mental Disorders (DMS-III) replaced the diagnosis of hysterical neurosis with dissociation and conversion. 23,24 However, an unexpected consequence of the more precise definition of the typical (or organic) forms of dystonia was the increasing visibility of the atypical forms of dystonia and the possibility that these might reflect nonorganic dystonia. Thus, in 1978 and then in 1983, Fahn and colleagues reported on the first patients of the modern dystonia era with nonorganic dystonia.25,26 Consequently, they published a systematic report on the characteristics of 21 patients with “psychogenic” dystonia based on diagnostic criteria that the authors proposed

Now the amazing thing here is that once they had realized that they had made a mistake and dystonia was indeed an organic illness, they made the same mistake again once they started seeing "atypical" cases. They did not learn from their mistakes.

So how do they know that one dystonia is psychogenic and one is not?

I suspect only god(the neurologist?) knows.

 

[Cheshire]

No, its not that. First of all, you feel dismissed; the doctor is essentially saying that all your symptoms are irrelevant to him, they're just your way of expressing you distress and of no interest in their own right. Second, you sense in your heart of hearts that the diagnosis is incorrect, and therefore, it is the end of hope for a valid treatment (as much as you want to believe that all will be cured with psychotherapy, you realise it won't). Third, you feel judged, because unlike "real" mental illness (for example, bipolar disorder or schizophrenia), there is an implication here that you have a weakness of character, that you've somehow brought this upon yourself.

Fourth, your diagnosis identifies you as a member of the most contemptible and despised patient group on earth, the "somatisers". Patient with "real" psychiatric disorders are treated with much more dignity and respect by both the medical profession and society in general. Just look at the things the British press - and British psychiatrists - say about us. The are able to caricature us as zealots who are hell-bent on an agenda to undo the fine work of the psychiatric establishment due to our own rabid delusions and self denial. They could never get away with that if we were any other patient group. Imagine if they tried to say such things about people with schizophrenia, or cancer, or HIV, there would be an outcry! But we are fair game.

Just well said!


There's a strange dimension in a psychosomatic diagnosis that is absent of any other psychiatric disorders.

They imply that our symptoms don't exist, we are just focusing on ordinary feelings, and our crazy little mind interprets that as disease signs. I can't imagine someone saying to a depressed patient: you’re not depressed, you think you are. You’re not tired, you think you are. This is just dismissive and incredibly patronising.


And for movement disorder symptoms, the underlying explanation that you unconsciously create your symptoms is coming from the now discredited psychoanalysis movement. What does that mean?? How is it possible? How can someone unconsciously create weird physical movements because of psychological problems??? It just looks like magical thinking to explain what we don't understand. The cognitive and behavioural model looks like science, but if you dig deeper, it is no more backed up by science, and is a field of unverified “hypothesis”. It insists on inconsistency, distractibility giving these disorders a poor legitimacy.


And like Woolie said we are made responsible for improving. They present it as a positive thing: recovery is possible. You have the power to get better, you must believe in it!


I just don’t understand how people who are supposed to have studied psychology during years can come with such a poor, and hurtful model.

How can’t they see the other side of the coin: if you fail to improve, you didn’t tried enough, you're a failure? How can’t they see the immense (and counterproductive!!) guilt that can arose from such an assumption? Especially when the stats about recovery are just so poor!

And how can they offer the promise of recovery when recovery seldom happen? I see it as a very cruel attitude.

 

[user9876]

Or of course, it might have made no difference at all. Some people may spontaneously improve, and attribute it to the treatment they were doing at the time. Also, if you are hopeful about a treatment, you may be more likely to notice good days and pay less attention to bad days, a sort of confirmation bias (I know I've been guilty of this before).

I've wondered about another effect which is as you feel slightly better you try different things/treatments that prior to that you were not able to contemplate. So this would help produce additional confirmation bias.

 

[Jeckylberry]

Fourth, your diagnosis identifies you as a member of the most contemptible and despised patient group on earth, the "somatisers". .

Yes, that's it, thanks @Woolie! And @Cheshire! It's not about my poor attitude, it's about my opposition to being pigeon-holed into a space that completely disempowers me. Everything is set up to knock down people who resist a diagnosis. Far better for them if I go meekly to my doom and if my condition changes then it is up to them to make their own judgements about their performance like poor Ms A. who had to wait til a post mortem for her illness to be acknowledged and even then it was not viewed with the remorse due to it. I suppose that is why they hate "Dr Google" and denigrate those who try to find their own answers. And yes, there is part of me that keeps asking - am I just being a hypochondriac? Am I over-exaggerating tiny symptoms and causing my condition? Is that why noone can find anything... etc etc... It's so easy to ask that because that is what they are asking. We are brought up to expect answers. There is nothing wrong with wanting peace of mind and unless you are very inexperienced there is no peace of mind to be found in the psycogenic diagnosis.

 

[Cheshire]

Another interesting study related to this topic:

‘This really explains my case!’: biographical reconstruction of Japanese people with fibromyalgia meeting peers
Mieko Hommaa*, Yoshihiko Yamazakib, Hirono Ishikawac & Takahiro Kiuchic
Health Sociology Review

ABSTRACT
Fibromyalgia (FM) is a controversial disorder with an unknown organic basis, so the legitimacy of the disease is controversial. People with FM struggle to explain their ‘invisible’ illness and to reconstruct their biographies. This study focuses on the significance of self-help groups (SHGs) in the process of reconstructing biographies of persons with FM. We interviewed 13 individuals with FM who participated in 2 different types of SHGs. Informants suffer from disparities between their severe bodily symptoms and appraisals from others, resulting in self-doubt and existential crisis. These disruptions were partially repaired by receiving a diagnosis, but this provided limited power to explain their ‘unreasonable’ disruption. Our findings indicate the importance of hearing the life stories of peers which can repair informants’ disrupted biographies through the fu-ni-ochiru experience, a form of comprehension of one's illness by which the informant obtains a clear perspective through physical sensation, or full acceptance rather than logical understanding. Thus, our study expands knowledge regarding how people with FM reconstruct their biographies.

http://www.tandfonline.com/doi/abs/10.1080/14461242.2015.1098559