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Old 12-03-2009, 10:09 AM   #511
Undertoad
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Quote:
Originally Posted by Flint View Post
Are you ƒucking kidding me?

This is what I learned from watching the video you posted: The doctors who have actually examined her believe she has dystonia. Then "some guy" on the news who hasn't examined her, but has seen some videos of her, thinks she might have this other condition.
Desiree followup:

Actually, Flint, according to the VAERS report, it turns out that the doctors who originally examined her listed dystonia as one of maybe 30 possible descriptions of her malady (along with "psychosomatic illness" as I posted earlier). But reviewing the Wikipedia entry on Desiree*, the first news item that ever occurred on her was in her local paper, in which they state:

Quote:
Desiree has seen her primary care physician, physical therapists, speech therapists, neurologists, neuropsychologists, psychiatrists and a bevy of nurses.

Amazingly, it was her physical therapist who provided the clinical diagnosis: Dystonia.
Her physical therapist...! Not "doctors who have actually examined her".

If it isn't clear by now, part of my fascination with this case is really how information travels. What do people find relevant, what do they repeat? How do errors get introduced into the narrative, and do they ever correct themselves? When Flint wrote

Quote:
Are you ƒucking kidding me?
This was a very motivational demand, and somehow it made me want to follow this through to the most bitter end, in tw-like fashion.

Why did Desiree repeat the diagnosis of dystonia given by her physical therapist, and not any of the scores of other possibilities given by actual physicians and specialists? I don't think she was ever faking, so I'd say we don't know. Maybe that was just the weird word she remembered. Maybe the physical therapist was more personal and convincing than the Johns Hopkins neuropsychologists.

Why did the newspaper say "Amazingly, it was her physical therapist" and not "Despite a bevy of possible explanations from specialists, Desiree chose her physical therapist's call as the right one"? Because reporters for small local dailies are often not the best journalists.

Why did Inside Edition press that as the narrative? Because Inside Edition is TV tabloidism and their goal is to quickly and cheaply develop exciting and controversial stories, not to dig for the truth. Did they make a follow-up call to Johns Hopkins? ƒuck no, that's the boring part! We don't need to understand the story, just to be alarmed by pretty girl who can only walk backwards. That's how you score ratings amongst the people who watch syndicated tabloid TV in early nighttime. A self-selecting audience of the gullible.

And my Google alert on DJ shows a handful of new bloggers every day, spreading the news that DJ is permanently disfigured, even though she's been all better now for a month.



*The DJ controversy entry is marked to be deleted as not relevant enough for Wikipedia. If it is removed, this thread will remain the most extensive and documented discussion on DJ on the net, from what I have seen.
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Old 12-03-2009, 10:29 AM   #512
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Does that mean an influx of Inside Edition viewers, or dystonia researchers?
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Old 12-03-2009, 10:35 AM   #513
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And vaccine alarmists. I welcome all.
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Old 12-04-2009, 10:38 PM   #514
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You know what? I stand by my original irritation. You turn on the boob tube and some guy is (with a straight face) actually making a medical diagnosis based on watching some videos. My "fascination with how information travels" meter starts going off at that point. Doesn't yours?
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Old 12-05-2009, 12:34 AM   #515
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You said "some guy" again.

Quote:
Yes, where "some guy" is Dr. Stephen Grill, who spent three years in a neurology residency; four years in a fellowship on movement disorders with the National Institutes of Health; is a Medical Advisor for the Dystonia Medical Research Foundation; is lead physician at the Parkinson's & Movement Disorders Center of Maryland; and is a tenured professor at Johns Hopkins, where Desiree was diagnosed.
So: what's the motivation for a neurologist with a specialty in movement disorders to lie about this or make something up? He puts his reputation on the line for... the sake of a few minutes of local news air time?

As someone with deep training and experience, this some guy sees things that we don't. The woman has lost muscular control except when she speeds up, or goes backwards instead of forwards. Her knees cannot not support her to get to the starting line of a 10 k race... and then immediately work perfectly to run the race... and then immediately can't support walking again. Her knees work walking backward, but immediately not forward... and then immediately work again walking backward. Can dystonics suffers ever do that? I can easily imagine an expert drawing broad conclusions on that basis.

Similarly, which I haven't posted about: Dr. Buttar reported that soon after her cure, she only lost speech abilities when talking about her condition. The change in her ability to speak wasn't an inability to say certain syllables, requiring muscle control. It's not that she couldn't get her tz's out. It was the *meaning* of the words, the *emotion* behind the words, her very beliefs that changed her ability.

Like running versus walking, it's using the same muscles but in a different psychological state. So, psychosomatic? I think you think it was.
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Old 12-05-2009, 11:22 AM   #516
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Originally Posted by Undertoad View Post
The woman has lost muscular control except when she speeds up, or goes backwards instead of forwards. Her knees cannot not support her to get to the starting line of a 10 k race... and then immediately work perfectly to run the race... and then immediately can't support walking again. Her knees work walking backward, but immediately not forward... and then immediately work again walking backward. Can dystonics suffers ever do that? I can easily imagine an expert drawing broad conclusions on that basis.
Did you watch the second video I linked back in post 435? Seems to be the same kinda thing going on, although much less dramatic.
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Old 12-05-2009, 11:43 AM   #517
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Quote:
Originally Posted by Undertoad
So: what's the motivation for a neurologist with a specialty in movement disorders to lie about this or make something up? He puts his reputation on the line for... the sake of a few minutes of local news air time?
You have it backwards. He is not putting his reputation on the line, he is solidifying his reputation by speaking up in favor of the accepted medical doctrine. To stay silent on the matter, or to say that he can't know for sure what's going on, would be to put his reputation on the line. The doctors doing the unconventional things are the ones putting their reputations on the line; this guy is just trying to throw them under the bus. If he turns out to be wrong, what happens? Nothing, because then practically everyone would have been wrong right along with him.

Edit to add: I don't believe he's lying or making anything up. I believe he's protecting what he's always believed, and what he's built his career on. It wouldn't look very good for "a Medical Advisor for the Dystonia Medical Research Foundation; lead physician at the Parkinson's & Movement Disorders Center of Maryland," etc. to have no understanding of this woman's dystonia. So he insists (and honestly believes) that he does have an understanding of it, one that makes it fit in with what he already believes.
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Old 12-05-2009, 12:02 PM   #518
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Originally Posted by Undertoad View Post

So: what's the motivation for a neurologist with a specialty in movement disorders to lie about this or make something up? He puts his reputation on the line for... the sake of a few minutes of local news air time?
Why wouldn't he? What makes this guy different from all the other doctors, scientists and researchers who's unscrupulous behaviour has been discussed or documented here? Money, sex, drugs, position.... they've all had their reasons.

Why would he publicly diagnose a person, not his patient, that he's only seen on videotape?
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Old 12-05-2009, 03:06 PM   #519
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Did you watch the second video I linked back in post 435? Seems to be the same kinda thing going on, although much less dramatic.
Sure, but it's the much less dramatic part that makes it unconvincing; at no time does this sufferer have complete control whatsoever.

Actual dystonia sufferers are apparently treated by the INJECTION (!) of botulism TOXIN (!) in order to get complete muscular control...

ETA: We could just ask the actual dystonia suffers if they believe DJ had dystonia. Well we don't need to, they already spoke up on that matter to say she didn't.
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Old 12-05-2009, 03:19 PM   #520
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Nitpick: the botulism doesn't give complete or really even any added muscle control, it just makes the uncontrolled movements less severe because the muscles are losing their ability to tighten at all.
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Old 12-05-2009, 04:39 PM   #521
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As a reminder, so we can keep facts straight:

People who thought DJ had dystonia:

DJ's physical therapist

People who thought neurological dystonia was not her major malfunction:

Dr. Stephen Grill
A large team of DJ's original diagnosing physicians, including neurologists and neurological psychiatrists at Johns Hopkins
The U of MD's dystonia department
The Dystonia Foundation
DJ's treating physician, Dr. Buttar
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Old 12-05-2009, 06:00 PM   #522
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Sure, but it's the much less dramatic part that makes it unconvincing; at no time does this sufferer have complete control whatsoever.
So it's not the symptoms you described that you have issue with, it's actually the degree.
The people in the 2 videos I linked seem to have varying degrees of symptoms as well - what do you make of that?

Quote:
Actual dystonia sufferers are apparently treated by the INJECTION (!) of botulism TOXIN (!) in order to get complete muscular control...

ETA: We could just ask the actual dystonia suffers if they believe DJ had dystonia. Well we don't need to, they already spoke up on that matter to say she didn't.
Wtf? Is any of this in response to the questions I asked about the doctor you find credible or....
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Old 12-05-2009, 06:15 PM   #523
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Why wouldn't he? What makes this guy different from all the other doctors, scientists and researchers who's unscrupulous behaviour has been discussed or documented here? Money, sex, drugs, position.... they've all had their reasons.
The ones documented here?

Quote:
Why would he publicly diagnose a person, not his patient, that he's only seen on videotape?
As one of the area's leading physicians, he may feel that correcting dangerous misinformation to improve the public health is part of his job.
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Old 12-05-2009, 06:26 PM   #524
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The ones documented here?
Yes, there have been quite a few, from pharmaceutical to climate research. I hope you didn't miss them all.


Quote:
As one of the area's leading physicians, he may feel that correcting dangerous misinformation to improve the public health is part of his job.
That misinformation being that Desiree specifically was injured by a vaccine, or that it is actually possible to be injured by a vaccine?
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Old 12-05-2009, 06:33 PM   #525
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So it's not the symptoms you described that you have issue with, it's actually the degree.

The people in the 2 videos I linked seem to have varying degrees of symptoms as well - what do you make of that?
One of them seems to go between a 6 and an 8 (before treatment); the other woman seems to go from a 3 to a 5 and back again. DJ went from a 0 when running to a 7 when walking. She was using the same muscles...

But, also, what I make of it is not all that important. I'm only speculating on what an educated, experienced specialist might see that would convince him, within 15 seconds, that the stated diagnosis was wrong.
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