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

[Jeckylberry]

Thanks Woolie. Yes, it's an interesting observation you made about FND diagnosed people. I'm not sure but it seems the sheer confusion around what it is creates a diversion from its actual worth as a diagnosis or even as a real thing. I can't really get a grip on it, despite being a scientist! It is described in such nebulous terms. For instance it is described as a problem with software not hardware... Okaaayyy. And that means exactly what? My neurologist is passionate about raising awareness of it and has studied in Scotland where most of the more solid info about it being "real" is coming from. He has made a great effort to raise it from being seen as a time waster to something that can actually be addressed and even cured. So, again, I don't know if this is helpful, or muddies up the murky waters of psychogenic illnesses even more. At least he is attempting to create more kindness and respect for sufferers and I have actually encountered better treatment in his wake. Still...

Part of what I read involves there being not enough known about the brain and how it works to simply state that an illness is psychologically based. He says the brain is far more plastic and can be trained and it can develop neurological characteristics- well now that starts to sound like conversion disorder, doesn't it? So you an end up with a real illness but that has no physiological pathology. So it's NOT real, then? Then he says that the machines we have don't pick up all the tiny details that may be at play. That makes more sense now. Could be just a mechanical inadequacy, then. If that is so, then why shroud it in Freudian terms? That makes it a hardware problem that we can't see, which is very different from a software problem.

As far as I can understand this thing is either psycogenic or it doesn't exist. If our machines can't pick up something, we can't call it anything until they can. It is undefinable. To label something like it's known when it's not is bad science. I don't think you can have it both ways. It's unknown, right on the cutting edge, or it's psycho-rubbish.

It seems a bit different to ME because with that there is a clear divide: it's real or it's not. Perhaps in it's earlier days it was as nebulous as FND but it is now clearly defined.

Some ideas why FND dxed people don't fight the dx...

Not knowing what it is and isn't so they get blinded by pseudo logic. They are looking for answers and some of the postulated theories sound plausible. Eg, you were an abused child or you did have a particularly disruptive, stressful time...

Sent away from the clinc by a sincere practitioner makes me feel validated, a little. There are practioners out there who do take it seriously despite its inadequacies and they do treat their patients with respect. A little part of me wants to believe that I'm being cared for in the best way for me. Then the rational part of me returns and says, no this is crap. By that time I've got some other appointment where they reinforce it again. It's a form of brainwashing.

Looking for other causes is said to be unhelpful for ones recovery. Nuff said on that.

Not having an alternative hypothesis. For me, I know I have something and it's nothing to do with software.

 

[Kyla]

So sorry to hear of your experiences @Jekylberry. This sounds truly horrifying.

You mentioned in your first post wondering if you might have Chronic fatigue, I'm assuming you mean Chronic Fatigue Syndrome? not being pedantic, just not sure if you mean you have the symptom of fatigue or are wondering if you have CFS.
Here are the diagnostic criteria for ME/CFS if you want to take a look and see if they fit:
http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf

Either way you are most welcome here, and there are many here who can at least sympathize with the experience of disrespect or gaslighting from people in the medical profession

Here is a good recent take-down of "psychosomatic" disease in general that you might find interesting:
https://aeon.co/opinions/bad-thoughts-can-t-make-you-sick-that-s-just-magical-thinking
The author, Angela Kennedy, has a book about the problems with psychogenic theories generally:
http://www.amazon.ca/Authors-Our-Own-Misfortune-Explanations/dp/1479253952

 

[Woolie]

For instance it is described as a problem with software not hardware... Okaaayyy.

You might be interested in this youtube instructional video, which is about "medically unexplained symptoms" in general:
http://forums.phoenixrising.me/inde...ic-movement-disorder.35315/page-4#post-667980
At the end, the presenter talks about using the hardware/software analogy to explain to patients what their problem is. You are right to be concerned about this. You can see in this video what the presenter's real views are on the illnesses he describes, and he recommends the software/hardware approach.

These blurry, deliberately confusing and often logically inconsistent stories you guys get told (and that's what they are) would be enough to drive anyone crazy. It seems to be all part of the lies they tell you to cover up the fact that they believe you have a psychological problem, but know it would affront you to be told so. We've talked about this on PR before. I think some of the better ones believe this is a way of keeping your faith so they can actually help you (because if they came out and said what they really believe you'd run a mile). But for the best of motives, its still deception, I think. And very patronising.

My neurologist is passionate about raising awareness of it and has studied in Scotland where most of the more solid info about it being "real" is coming from. He has made a great effort to raise it from being seen as a time waster to something that can actually be addressed and even cured. So, again, I don't know if this is helpful, or muddies up the murky waters of psychogenic illnesses even more. At least he is attempting to create more kindness and respect for sufferers and I have actually encountered better treatment in his wake.

Yes, I think I know who you're referring to. That is worth quite a lot, I agree. Its definitely a start. The practitioners in your area do seem to be more decent people than those in the MECFS world. And perhaps that's why people don't get so up in arms. But their clever deception also helps to divert attention to the real problem, which is the assumption about psychological causation.

 

[Jeckylberry]

Thanks Kyla. Very interesting! You are right. I should not abbreviate. It's too easy to make light of something. It's common in Australia to hear that term 'chronic fatigue' bandied around like its nothing.

I'm not sure what it is, just that it is. I quite like the SEID title because it has the words "exertion intolerance" in it and that is something that I am very familiar with. I did say CFS to the neurologist who shrugged and said it was also functional. Thus denying any further investigation on the topic. Rather like a crocodile downing a frog in one big gulp.

 

[Jeckylberry]

You said it Woolie. It's patronising all right. Can't help feeling slightly disconcerted and manipulated when I come out of an appointment. Is that link ok? I couldn't get to it. I tried looking up YouTube itself but there are a lot of videos on the topic. I don't think I could stomach more than one.

 

[Woolie]

Is that link ok?

Sorry, I seem to have given you the wrong link. But I just checked and the video has been made private now. Might have been a few negative comments or something.

But there's a discussion on it here if you want to get the gist.
http://forums.phoenixrising.me/inde...eared”-and-forgotten.41104/page-3#post-666235

 

[Jeckylberry]

Sorry, they seem to have made it private now. Might have been a few negative comments or something.

Haha!! That's psycocensorship for ya!

 

[Chrisb]

I would be interested to know peoples views on PMD within a condition often mentioned in the outlying regions of CFS. That condition is neurasthenia. I presume that all will have seen the images of shell shocked first world war troops, with their uncontrollable tremors, random, erratic movements and strange gait. They would mostly have received a diagnosis of neurasthenia.

Whenever neurasthenia is mentioned in the context of CFS or ME it always seems to be implicit that it is a neurotic or hysterical disorder. There were well over 100,000 front line British troops diagnosed with the condition. I have no difficulty in ascribing the condition to physical causes. There were reports of bodies found on the battlefields quite unscathed, but quite dead. It was assumed that they were caught by the blast, but missed by the shrapnel. I am not quite sure what a false or hysterical death belief could be. It seems reasonable to suppose that blasts which can cause death can cause lesser trauma,

It seems that the War Office psychiatrists categorised these "neurasthenics" into two groups; the commotional and the emotional. The first group had clear evidence of proximity to shell burst, the second group sometimes developed apparently identical symptoms despite not having been to the front. There seems to have been controversy even then regarding classification of the condition, reminiscent of the problems over classification of ME.

I have often found the dismissal of neurasthenia offensive. I knew someone with a war pension based on the condition. It was certainly nothing like ME. In his eighties he occasionally turned up at the door having walked four miles and intending to walk back home. As well as certain "cognitive disfunctions" he would sometimes seem to lose his balance and break into a little run until he came upon something to halt his progress. The phosgene and mustard gas had been much too much for him. That and the shelling. I am not sure how those who dismiss the condition would have reacted.

 

[Woolie]

It seems reasonable to suppose that blasts which can cause death can cause lesser trauma

Totally agree, but that's the problem with humans, we do love a story, don't we? Hysteria, conversion disorder, neurasthenia, PTSD, they're all so much more exciting that boring old injury. Such a great anti-war narrative. And come to think of it, cancer brought on by negative thinking, ulcers by stress, so much more interesting - and less threatening - than just putting this all down to the random cruelties of biology.

Not saying people can't be psychologically damaged by experiencing bad stuff. Just saying if there are disabling and chronic physical symptoms, its probably not just a case of psychological trauma.

 

[Sidereal]

As far as I'm concerned, all of this functional/psychogenic stuff is the result of human propensity for magical thinking. The easier stuff that's clearly organic has been separated from the "demons/emotions did it!" pool of illness which used to be very large. What remains now is the really hard stuff for which there is yet no sensible explanation or technology that can pick it up.

Regarding war and neurasthenia, I enjoyed this article about PTSD which basically showed what a bogus diagnosis this is. There is an automatic assumption that trauma causes PTSD but..

J Anxiety Disord. 2007;21(2):176-82. Epub 2006 Oct 19.
Is PTSD caused by traumatic stress?
Bodkin JA1, Pope HG, Detke MJ, Hudson JI.
Author information

Abstract
Sequential subjects (N=103) presenting for pharmacologic treatment of major depression were examined prior to treatment for history of traumatic experiences. Subjects were also examined for symptoms of posttraumatic stress disorder (PTSD). Two blinded raters subsequently judged whether subjects' experiences met DSM-IV criteria for trauma (criterion A of PTSD). Among 54 subjects scored by both raters as having experienced trauma, 42 (78%) met all other DSM-IV criteria for PTSD. Among 36 subjects scored by both raters as not having experienced trauma, 28 displayed all other DSM-IV criteria for PTSD--also a rate of 78%. This equivalence suggests that in a treatment-seeking population, caution should be exercised in attributing the PTSD syndrome to trauma.

 

[Woolie]

Great find, @Sidereal! I'm increasingly staggered by the amount of bias there is in psychiatric diagnosis. And the worst of it is, they don't even seem to acknowledge that bias could be a problem, so they take no steps to address it.

 

[Cheshire]

The way in which unexplained neurological symptoms are gathered under a psychiatric diagnosis relies on poor evidence.

J Psychosom Res. 2015 Sep;79(3):190-4. doi: 10.1016/j.jpsychores.2015.06.002. Epub 2015 Jun 14.
Functional (psychogenic) movement disorders associated with normal scores in psychological questionnaires: A case control study.
van der Hoeven RM1, Broersma M2, Pijnenborg GH3, Koops EA2, van Laar T2, Stone J4, van Beilen M5.

Abstract: Our data show that a substantial proportion of patients with FMD score within the normal range in psychological questionnaires

So a normal reaction would be to question the psychiatric categorisation of such disorders.

But on the contrary, they just congratulate each other for having removed any psychogenic ethiology for functional neurological disorder in the DSMV. (the exact opposite of the Somatic symptom disorder of the DSMV, where they added (poor) mandatory psychological symptoms).

Our data show that a substantial proportion of patients with FMD score within the normal range in psychological questionnaires, lending some support to the new DSM-5 criteria.

So great, now we can diagnose a psychiatric case without any psychiatric symptom! Well done guys!

 

[Chrisb]

I think we may be using the word trauma in opposing senses. I was using it to mean "a wound," "an injury. "I suspect that you are using it in the sense "an emotional shock that may be the origin of a neurosis". Difficult things are words.

 

[Sidereal]

I think we may be using the word trauma in opposing senses. I was using it to mean "a wound," "an injury. "I suspect that you are using it in the sense "an emotional shock that may be the origin of a neurosis". Difficult things are words.

True, yes, it means different things in psychiatry vs the rest of medicine.

 

[Woolie]

So great, now we can diagnose a psychiatric case without any psychiatric symptom! Well done guys!

I saw this too, Cheshire. Astonishing, isn't it? No-one - simply no-one - in the field ever says "Hang about, maybe we might have got this wrong".

 

[Sidereal]

"Functional" symptoms + psych disorder = you are crazy, further proof of your functional neurological symptoms being psychiatric.

"Functional" symptoms + no identifiable psych disorder = still crazy, just in a different way.

Heads we win, tails you lose.

 

[A.B.]

Great find, @Sidereal! I'm increasingly staggered by the amount of bias there is in psychiatric diagnosis. And the worst of it is, they don't even seem to acknowledge that bias could be a problem, so they take no steps to address it.

I have become quite cynical on this matter. I think that they intuitively know that if they did proper science and sought to eliminate bias as much as possible, that their field would shrink considerably.

Unfortunately all this fake science is preventing real progress to take place.

 

[chipmunk1]

I would be interested to know peoples views on PMD within a condition often mentioned in the outlying regions of CFS. That condition is neurasthenia. I presume that all will have seen the images of shell shocked first world war troops, with their uncontrollable tremors, random, erratic movements and strange gait. They would mostly have received a diagnosis of neurasthenia.

Whenever neurasthenia is mentioned in the context of CFS or ME it always seems to be implicit that it is a neurotic or hysterical disorder. There were well over 100,000 front line British troops diagnosed with the condition. I have no difficulty in ascribing the condition to physical causes. There were reports of bodies found on the battlefields quite unscathed, but quite dead. It was assumed that they were caught by the blast, but missed by the shrapnel. I am not quite sure what a false or hysterical death belief could be. It seems reasonable to suppose that blasts which can cause death can cause lesser trauma,

It seems that the War Office psychiatrists categorised these "neurasthenics" into two groups; the commotional and the emotional. The first group had clear evidence of proximity to shell burst, the second group sometimes developed apparently identical symptoms despite not having been to the front. There seems to have been controversy even then regarding classification of the condition, reminiscent of the problems over classification of ME.

.

seen the images of shell shocked first world war troops, with their uncontrollable tremors, random, erratic movements and strange gait.

Arsenic poisoning can cause tremors and in some cases ataxia and motor neuron damage.

http://www.dailymail.co.uk/news/art...rsenic-unexploded-shells-grows-100-years.html

http://www.toxicremnantsofwar.info/assessing-the-toxic-legacy-of-first-world-war-battlefields/

But if we don't understand it must *of course* be psychosomatic!

https://en.wikipedia.org/wiki/Shell_shock

Some men suffering from shell shock were put on trial, and even executed, for military crimes including desertion and cowardice. While it was recognised that the stresses of war could cause men to break down, a lasting episode was likely to be seen as symptomatic of an underlying lack of character.[10]For instance, in his testimony to the post-war Royal Commission examining shell-shock,Lord Gortsaid that shell-shock was a weakness and was not found in "good" units.[10]The continued pressure to avoidmedical recognitionof shell shock meant that it was not, in itself, considered an admissible defence.

 

[Chrisb]

Arsenic poisoning can cause tremors and in some cases ataxia and motor neuron damage

This is interesting, but would you know the answer to two questions? Would these effects of arsenic poisoning have been known at that time, and would there have been sufficient exposure to the toxin to bring about an acute onset of ataxia.

Thanks for the links. I had been looking at the Wiki one and other information and thinking I ought to do more research by obtaining the 1922 commission report. This seems a very interesting area. The medical and governmental concerns about,and approaches to, neurasthenia from 1915 to 1922 have an uncanny resemblance to those to ME in the late 1980's and early 1990's. One might almost imagine that there was an institutional memory that was recalled in the late 1980's when budgetary concerns over pension entitlements might have started to arise. They seem to have got out the template and used large parts again.

I have read that some of the abnormal movement might have been caused by secondary oedema following concussion and that this might have been expected to resolve over time but my impression is that there was a substantial number of cases with residual movement disorders who had a diagnosis of neurasthenia.

 

[chipmunk1]

This is interesting, but would you know the answer to two questions? Would these effects of arsenic poisoning have been known at that time, and would there have been sufficient exposure to the toxin to bring about an acute onset of ataxia.
.

I am sure that the effects of Arsenic would have been known but i doubt that would have stopped psychiatrists or medical doctors from misdiagnosing them.

As for the exposure Levels. I have no idea but i guess that the exposures were high and significant.

There were all kinds of toxic substances used to disable or kill soldiers. Chemical warfare played a central role in WW1.

https://en.wikipedia.org/wiki/Chemical_weapons_in_World_War_I

A complete list, in so far as is known, of the gases used by the enemy, includes the following: #2 Acrolein, allylisothiocyanate, arsenic trichloride, arsine, bromacetone, bromacetic ether, bromethylmethylketone, bromide of benzyl, bromide of xylyl, bromide of toluyl, bromine, carbon monoxide, carbonyl chloride (phosgene), chloracetone, chlorine, chloropicrin, cyanogen, dichlorethylsulphide (mustard gas), dichlormethylether, dimethylsulphate, diphenylchlorarsine, diphenylfluorarsine, ethyldichlorarsine, formaldehyde, hydrocyanic acid, hydrosulphuric acid, iodacetic ether, iodacetone, methylchlorsulphonic acid, monochlormethylchloroformate (palite), nitrogen peroxide, phenylcarbylamine chloride, phosphine, phosphorus trichloride, sulphur dioxide, sulphur trioxides and trichlormethylchloroformate (diphosgene or superpalite).

Arsenic had been used widely used an artillery shells and mixed with phosgene gas. There have been other uses as well.

Sneeze Gas: "To force the removal of the protecting gas masks, the Germans have used what the soldiers call 'Sneeze Gas,' because its action is to cause violent desire to sneeze. It is chemically diphenulchlorarsine [sic], and shells containing it are mixed with other shells in a bombardment. On explosion, it expands to a damp gas containing arsenic, invisible, odorless, and subtle, which penetrates the filters of the gas masks, causing great irritation of the nasal passage.

in 1918 some of the weapons were also said to cause invisible brain injury.

Concussion:"The passage of big shells displaces air so suddenly that a man within range will be knocked to the ground by the rush of air. A small shell falling close to a man will have a similar effect, even if it does not explode. Thus dud-shells (i.e., those that do not explode at all) will nevertheless cause concussion. The effect is a nerve shock; something seems to break in the brain, in the words of the 'men who have come back,' and they suffer a loss of self-control. If a man is very near a large shell, he will not only be knocked to the ground, but literally crushed to pulp by the same tremendous force that shatters buildings to kindling wood in the path of a cyclone. A man may be lifted high in the air off a hard dirt road by the concussion of a shell."

Flying Pig:"The name of one of the heaviest trench mortars. It is about five feet long, weighs two hundred ninety-eight pounds, is shaped like a pig, and shoots a shell in which ninety-three pounds ofamnol[sic], a high explosive, is used. The 'flying pig' carries a light in the tail which goes out as soon as the shell begins to descend. This is a cue to waiting soldiers to get out of the way. The mortars throw a shell one thousand one hundred forty feet away, and even though no fragments touch him the concussion is so great that a man’s insides burst like a kernel of popcorn and death is usually instantaneous. This shell is also called a 'Sausage,' a 'Rum Jar' and 'Minnie.'"

http://www.slate.com/blogs/the_vaul...g_soldiers_terms_for_germany_s_munitions.html

IMO there are a many plausible explanations which do not involve conversion disorder theories. These were of course ignored and instead victim blaming was proposed as a solution.