Nov 02 2009

Dystonia Case Follow Up

In an interview for the SGU Christopher Hitchens told me that typically, after publishing a story, only then do people contact him that he should have spoken to in the first place. My humble blog has nothing of the reach of Hitchens’ writing, but it is still occasionally the case that after posting a blog I am contacted by people I really wish I had spoken to before I finished writing it.

For example, on Friday I discussed the case of Desiree Jennings, the 25 year old woman who claims to have developed dystonia 10 days after receiving the seasonal flu vaccine. I reported that all of the neurological experts who viewed the videos of Jennings that were made public (including me) are of the opinion that she does not have dystonia. Rather, the signs she displays are more typical of a psychogenic movement disorder, and therefore not due to the vaccine.

There is another angle to this story, however, that I was not aware of. I was mostly interested in the vaccine angle, as the Jennings story has been exploited by the anti-vaccine movement to further scare-monger about the flu vaccine. There is also a dystonia community, and they were not happy about the Jennings affair either. In particular, a woman by the name of Rogers Hartmann, who suffers from dystonia, and who has been one of the main faces of dystonia activism to the media, contacted me.

The dystonia community is concerned that the fact that neurology experts are forced to go on public record that Desiree Jennings’ symptoms are more consistent with a psychogenic disorder rather than a true neurological disorder may generate confusion in the public about the nature of dystonia itself. Fair enough – although I thought the doctors who were interviewed on Fox were pretty clear. I will also add here that dystonia is a perfectly legitimate movement disorder. It is, in fact, a brain disorder that results in involuntary muscle contractions. It can be very debilitating. The Desiree Jennings case should not confuse anyone about the nature of true dystonia.

But there is more still. Generation Rescue, the anti-vaccine group started by J.B. Handley and now fronted by Jenny McCarthy, was quick to jump on this case as a legitimate vaccine injury. But they then quickly distanced themselves from the case, removing the web page they had set up for Jennings. Here’s why.

The story appears to have been broken by the Loundountimes.com. Reporter Nicholas Graham discloses the Jennings is a colleague of his, and undoubtedly that is how he heard of her story. The story was then picked up by a Fox affiliate in DC, reported by Claudia Coffey. From there it was picked up nationally by Fox News and Inside Edition.

Generation Rescue president, Stan Kurtz, apparently saw the Jennings story as an opportunity to get some free press for their anti-vaccine nonsense. They “reached out” to Jennings. Here is what Kurtz had to say in an interview with Coffey.

“And the story is, anyone that sees– it is just so compelling, Jenny was crying over it,” says Kurtz.

Kurtz also believes with the proper treatment, some of her symptoms may be reversible.

“Well, unfortunately we happen to be very good at handling vaccine injury. We’ve got a lot of doctors that have experience in doing that, so our doctors and our resources are completely available to her, and we’re going do everything we can to give her a lot of options to, to help take care to help recover from this condition as best we can,” says Kurtz.

Poor Jenny was in tears, and Kurtz was ready to help by unleashing anti-vax quackery to treat Jennings.

But then Kurtz and Generation Rescue ran into a real patient advocacy group – Rogers Hartmann and dystonia activism. Hartmann runs an independent dystonia charity, lifewithdystonia.com. It was clear to Hartmann (as it was to anyone sufficiently familiar with dystonia) that Jennings did not have dystonia. She called Fox and Stan Kurtz – and then the furious backpedaling began. Until then Coffey had accepted the story at face value, without any journalistic due diligence in evidence. When she learned that perhaps she had been snookered, the panicked calls to Hartmann began.

It was not until after Hartmann became involved, and the e-mails and phone calls of many other dystonia activists putting pressure on Fox, did they do follow up reporting, such as interviewing Dr. Stephen Grill about dystonia and the fact that Jennings does not have it.

It was also due to Hartmann that Generation Rescue was (partially) saved from its own stupidity and zealotry. Stan Kurtz was going full-steam ahead, as if Generation Rescue had the expertise to diagnose and treat vaccine-induced dystonia (an entity never reported in the medical literature). And then (after being contacted by Hartmann and having the truth of the matter explained to them) suddenly and without a word, Generation Rescue backed away from Jennings and took down the web page.

I wonder if they will be as interested in helping Jennings now that they cannot exploit her case to fear monger about vaccines.

Curiously, the Age of Autism blog (never ones to let the facts get in the way) is still treating the case as a legitimate story of vaccine injury. Although they are being a bit cagey. They are just printing a letter from Jennings, with a preamble dismissing expert opinion that her disorder is psychogenic. They do this by explaining the etymology of the word “hysteria”, which is not exactly a synonym for psychogenic (in fact “hysteria” is no longer used because of its connotation). I guess they deny all psychogenic illness, even though it is very well described in the neurological literature.

I have personally seen cases that were proven to be psychogenic. These are not just cases where we cannot find a neurological cause – it is not a guess or a last resort. There are cases in which the neurological signs and symptoms on display are anatomically impossible – where a psychogenic cause is the only plausible explanation. And it is treated as a real and serious disorder – just a psychological disorder, rather than a neurological one. Ironically, AoA is trying to imply that neurologists who invoke the psychogenic diagnosis are being insensitive, but in reality they are basing their implications on a premise that is itself insensitive – a rather unsophisticated and harmful denial of psychological illness.

So far, AoA is still running with the story, writing in follow up about how Jenny McCarthy and Jim Carey were so kind to reach out to Jennings. I guess they didn’t get the memo from their sponsor, Generation Rescue, to back off.

This is an unfortunate story, and I wish Desiree Jennings the best. I hope she finds her way to a competent clinician and does not get caught in the maelstrom of quackery that is sure to follow her.

But this is not a story of a woman injured by a vaccine. This is not even a rare vaccine reaction. It is something else. Neurological experts know it, and the dystonia community knows it.

This is also a story of irresponsible journalism. As Hartmann pointed out to me – most national media outlets did not touch this story, because even basic journalism would have uncovered that there is something fishy here, and no good journalist wants to get caught with their pants down. This is also a story of how irresponsible the anti-vaccine movement is. They were quick to exploit this case for its emotional appeal, pretending to have expertise they lack, and got it completely wrong. That’s a good summary of the anti-vaccine movement as a whole.

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Addendum

Generation  Rescue has put back their page about Desiree Jennings. Apparently they decided that the propaganda value outweighed the risk. They are attacking those of us who felt obliged to say that the public videos of Jennings do not support a diagnosis of dystonia.

They again attack the concept of psychogenic, minimizing in the process all mental illness, and comparing it to outdated notions that autism was due to cold mothers. This is an absurd comparison. The only point being made is that Jennings symptoms, those that are in the public domain, are not compatible with the diagnosis of dystonia. It can further be added that there is no evidence or plausible reason to conclude that her symptoms are due to the flu vaccine.

They also repeat the anti-vax canard of using the vaccine injury compensation program as scientific evidence for specific types of injury caused by vaccines. This is not legitimate – the vaccine compensation program has a very low threshold of evidence for accepting claims. They only conclude that “compensation is appropriate” – not that it has been established that the alleged injury is in fact caused by vaccines.

As usual, Generation Rescue if being very intellectually sloppy in their presentation of this case, the public discussion of this case, and the nature of the evidence for vaccine safety.

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Addendum:

The examiner.com is reporting that a review of the vaccine adverse events reporting database reveals a report that fits Desiree Jennings’ case. The report includes a review of hospital records, and contains this summary:

The admitting neurologist felt that there was a strong psychogenic component to the symptomology, and made a final diagnosis of weakness.

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