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

[Jeckylberry]

What's your pulse like when you're just standing still for a while?

I don't know. No one's ever taken it. They always look at blood pressure which is unremarkable. I've had that one where you lie down and sit up suddenly and they look for drop in bp, but it doesn't show anything.

 

[Sidereal]

I don't know. No one's ever taken it. They always look at blood pressure which is unremarkable. I've had that one where you lie down and sit up suddenly and they look for drop in bp, but it doesn't show anything.

Yes, this has been my experience with doctors also. They only look for postural hypotension (because it's the only thing most of them know) but not postural tachycardia so if your BP doesn't drop when you stand they conclude everything is a-ok even though you might have another form of orthostatic intolerance. In my case, it took me months to figure out I had postural tachycardia syndrome (POTS) and I only discovered this once I bought a BP cuff and started monitoring myself in various positions. When I was lying down flat my pulse was about 80 whereas upright (back when I was really sick) it was going to 140, even 160 in the mornings.

 

[Jeckylberry]

Wow! That's full on. And very interesting. I'll look into that. I've heard of it, but never really read up on it. Certainly no one has ever suggested it - why would they? I'm an FND unbeliever. Thank you so much for the tip, Sidereal. It all helps incredibly.

 

[Woolie]

Think the UK are the world's greatest psychobabblers, bar none. Although from what I hear, the Netherlands and pretty good at it too.

But I think one way that FND is different from MECFS is that there is no dissent or disagreement in FND. Everyone seems to agree its psychogenic without a second thought. So you'll probably get the same crap wherever you go. Whereas in MECFS, there are various views - organic vs. psychological - and their prevalence varies by country..

neurosymptoms.org. Don't get me started. Check out the "Practical Neurology Article" On the "Downloads" page, talks about how to lie to your patient:

Ask what the patient thinks is wrong. Does he or she have any thoughts about why they have these symptoms? If not, what do family or friends think? If they (or their family) are convinced they have multiple sclerosis or Lyme disease or ‘‘crumbling bones’’ in the spine you need to know this, so you can tailor your later explanation.

 

[Cheshire]

neurosymptoms.org. Don't get me started. Check out the "Practical Neurology Article" On the "Downloads" page, talks about how to lie to your patient:

Ask what the patient thinks is wrong. Does he or she have any thoughts about why they have these symptoms? If not, what do family or friends think? If they (or their family) are convinced they have multiple sclerosis or Lyme disease or ‘‘crumbling bones’’ in the spine you need to know this, so you can tailor your later explanation.

"We know better than the patient what is good for him. So we'll tailor our speech to bring him where we want him to go, be it with lies or distortions of the truth. That's for their own good. Informed consent? Don't be kidding! These are psychiatric patients"

This is just mere paternalism. No patient deserve to be lied at, people with psychiatric disorder have the same right. And it's very worst when the lie is not only hyding the truth but part of the treatment. Then you add fraud.

 

[worldbackwards]

Think the UK are the world's greatest psychobabblers, bar none.

*pride*

 

[Jeckylberry]

Hells bells. What an example of smug elitism. They are the holders of the 'real' truth, Cheshire. Yes, they are the 'ones'. So they can afford to be magnanimous.

neurosymptoms.org are everywhere. And no, no one is fighting or questioning it. they are welcoming it. Every neuro either dismisses you as not worth their time or gets really pleased that they can help. It seems so wrong to diagnose it so quickly.

When I try to listen to them and take in all their 'help' and kindness, I feel like I'm doing myself an injustice. It feels distinctly dirty. That's probably why. Even in my "easily hypnotisable" state, I know I'm getting manipulated. They know their diagnosis isn't going to go down well.

 

[A.B.]

It's bad for self esteem to tolerate these manipulative liars.

 

[alex3619]

Every hospital in Brisbane, probably elsewhere too, gives out the same ones so it is all coming from the one source, informing the whole community who all know each other.

As a Queenslander, I find this very sad. Psychobabble is insidious.

 

[Chrisb]

I have got a bit behind with this thread, but I think this 4 part video is still relevant in terms of the present discussion. When I played it the other three parts ran automatically. It concerns shell shock, its designation as neurasthenia, and the treatments offered. In the treatments one can often see the origins of the present approach.

What I found especially interesting was the way in which a public information film can be regarded as a work of propaganda. Much is made of the curative effects of the psychiatric approach. It is only if one is still paying attention at the end that, almost in passing, it is mentioned that many of those allegedly cured continued to have unspecified difficulties. And that one third of cases showed no benefit from this approach. Nothing is said about what became of such people. One of the comments refers to the number of them still occupying Salvation Army Hostels in the 1960's apparently ignored by the system.

It is strange how this figure of approximately one third of cases keeps cropping up, untouched by the miracle cures

In passing, can I thank @chipmunk1 for his information which I found thought provoking.

 

[worldbackwards]

In passing, can I thank @chipmunk1 for his information which I found thought provoking.

Agreed. I always feel more cheerful when I see Chipmunk has popped in and I can imagine all that stuff coming out of Freud's mouth.

 

[Jeckylberry]

As a Queenslander, I find this very sad. Psychobabble is insidious.

It's pretty dire. LIke I said, the shocking thing is the SPEED at which the diagnosis is made.

I don't know about this, but I've been thinking that the patients personal experience, coping mechanisms and interpretation of their illness would affect their presentation. I mean, suppose my way of coping with dizziness caused by tachycardia is to try different ways of walking. Suppose that I feel more steady walking on tip toe, or if I walk with my body turned to the side. These methods of compensating may not look like a standard presentation of organic disease. The older an illness gets, the more the person with it adapts to it. It takes on an individual look, surely. Then that gets more attention than the dizziness that caused it. Getting distracted by the presentation and not the history is a problem I think.

 

[alex3619]

These methods of compensating may not look like a standard presentation of organic disease.

I think this is even more the case in a fluctuating and ever changing disease like ME. What we have to do to compensate is about dealing with problems that most doctors are not even aware occur with ME. What we have is not chronic fatigue, and even when our fatigue goes away, temporarily or through good management in mild patients, we are still disabled. Those thinking this is about chronic fatigue will not see that.

 

[Woolie]

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.

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.

This young woman had a series of bad injuries playing high level ice hockey, the last of which resulted in serious symptoms:

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.

 

[Jeckylberry]

I think this is even more the case in a fluctuating and ever changing disease like ME. What we have to do to compensate is about dealing with problems that most doctors are not even aware occur with ME. What we have is not chronic fatigue, and even when our fatigue goes away, temporarily or through good management in mild patients, we are still disabled. Those thinking this is about chronic fatigue will not see that.

Yes, I absolutely agree. This is a situation where they DO have to believe in the existence of the illness. Funny how they seem to be more confident in FND more than ME.

When it has many changing facets, it has to be viewed intelligently and with a real ear out for the patient's history as well as knowledge about the nature of the illness. In my case, I don't believe I have any movement disorder, just the response to one symptom out of many that go unexamined, that makes my walking laboured - like I'm in water. It's my way of getting around. Sometimes it's worse than at other times. Many times I lose my voice. They consider this aspect atypical. According to the speech pathologist the vocal cords are very small muscles and are easily affected by fatigue or any neurological stressor. It's not surprising to her at all. Everything about my 'treatment" is frustratingly messed up. I get accused of muddying the water looking for alternative answers but to me FND has messed me up more than anything.

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.

 

[A.B.]

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.

Even if they were anxious it still wouldn't make any sense to conclude that these obvious movement problems are psychological in nature. That's just magical thinking. Which is probably the best way to describe the whole concept of psychosomatic illness.

 

[Jeckylberry]

Some eye-opening clips about FND/conversion disorder.

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.


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.

I think lots of illnesses are relieved with physio, yoga, good diet and relaxed attitude. This is not evidence that the diagnoses are right. Since the young women are intelligent and good students it will be easy for them to find things to talk about and to link the experiences to their illness just like they are supposed to. The speech issue in the first patient is interesting. I can hear a bit of a slur in the second one, too. My speech therapist says vocal cords are easily affected by changes in the nerves and muscles because they are such tiny muscles that rely on coordination. It's too easy to view them in terms of emotion.

I found this hard to watch, everyone nodding and agreeing this is 'real'. In the last video - where is the 'second opinion'? They all agree it's FND. And there's the voodoo again, putting a hex on anyone who tries to look harder and further - the longer you leave it, the worse it gets; the more you resist the diagnosis, the worse it will be for you.

I also doubt that they 'tried everything' before finally coming to the conclusion. If it's anything like my experience they try a few things like the obvious CT scan and a few obvious blood tests but they don't try 'everything'. Perhaps it's different in the US but I didn't come anywhere near a spinal tap. The neuro is already making up his mind as soon as he sees you, the GP goes with what the specialist says. Once the neuro makes the decision he doesn't do any more tests nor even examine you. My last two appointments involved no exam at all despite the last one being after I was in hospital with new and worsening symptoms. Since yoga and diet have helped this patient, it must be the right diagnosis....???

 

[Cheshire]

Here's a great paper, that explores the limits of a psychogenic diagnosis.

Psychogenic Explanations of Physical Illness: Time to Examine the Evidence
Carolyn E. Wilshire and Tony Ward, Victoria University of Wellington, Wellington, New Zealand

In some patients with chronic physical complaints, detailed examination fails to identify a well-recognized
underlying disease process. In this situation, the physician may suspect a psychological cause. This review
critically evaluates the evidence for this causal claim, focusing on complaints presenting as neurological
disorders. There were four main conclusions. First, patients with these complaints frequently exhibit
psychopathology, but not consistently more often than patients with a comparable “organic” diagnosis, so a
causal role cannot be inferred. Second, these patients report a high incidence of adverse life experiences, but
again, this evidence is insufficient to infer causation: A psychogenic diagnosis is likely to prompt careful
reexamination of negative past experiences, thereby introducing a recall bias. Third, although psychogenic
illnesses are believed to be more responsive to psychological interventions than comparable “organic” illnesses,
there is currently no evidence to support this claim. Finally, recent evidence suggests that biological and
physical factors play a much greater causal role in these illnesses than previously believed. We conclude that
there is currently little evidential support for psychogenic theories of illness in the neurological domain. Future
research needs to take a wider view concerning the etiology of these illnesses.

https://www.researchgate.net/public...physical_illness_Time_to_examine_the_evidence

 

[Valentijn]

Funny how they seem to be more confident in FND more than ME.

ME is a neurological disease which was around for a while before psychogenic theorists tried to hijack it. They've had to fight to keep their hands on it.

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.

 

[Woolie]

putting a hex on anyone who tries to look harder and further - the longer you leave it, the worse it gets; the more you resist the diagnosis, the worse it will be for you.

Love the way you put this, @Jeckylberry!

I don't know where they pull these ideas from - the FND "bible"? Cos there's no evidence that any of the interventions they recommend actually work. And as for "acceptance of the diagnosis", ditto.