Dystonia from a flu vaccine? Almost certainly not.

Several of my readers have been writing in with links and stories about the case of Desiree Jennings, a 28-year-old cheerleader who was apparently healthy until sometime in August, when she received the seasonal flu vaccine. A typical news story on Jennings can be seen here:

I’m not a neurologist, which made me reluctant to take this on, but right from the beginning something didn’t seem right. I had never heard of a case of dystonia that looked anything like the above, particularly the part where walking backwards reversed (if you’ll excuse my word choice) her jerky motions or where she could run but not walk. Moreover, it seemed highly unlikely that a vaccine could cause such a problem. However, I didn’t have the expertise to take this on; so I waited a while in the hope that someone who does have the expertise would do so eventually.

Fortunately, Steve Novella did. His observations:

The movements and symptoms that Ms. Jennings displays on the public videos I have seen (linked to above) are not compatible with the diagnosis of dystonia, or any other movement disorder. Dystonia is one type of involuntary contraction of muscles. It can be reduced or exacerbated by certain movements or positions, and there are “task specific” dystonia, such as writer’s cramp, that come out only with certain activity. Jennings does not display the type of movements that are consistent with dystonia. Her speech and movement are, however, very suggestive of a psychogenic disorder.

This also seems to be the consensus opinion of experts who have viewed this case. The Dystonia Medical Research Foundation had this to say about the case:

Because of the concern of individuals with dystonia as to whether or not to get a flu shot because of this reported case, we have sought the opinion of dystonia experts on this case. Based on the footage that has been shared with the public, it is their unanimous consensus that this case does not appear to be dystonia.

The one news report that I saw that actually consulted an expert for their opinion was Fox News. Leigh Vinocur, and emergency room physician, was interviewed and relayed the opinion that the neurologists she consulted were of the opinion that Jennings’ symptoms were consistent with a psychogenic disorder. In other words – her symptoms are not neurological, they are psychological. This does not mean she has any insight or voluntary control over her symptoms – they are involuntary and “real” – just not neurological in origin. Symptoms such as this are not uncommon reactions to emotional stress in some individuals. Given the evidence presented, I think this is a reasonable opinion.

Here’s the report in which the emergency room physician mentioned by Steve discussed her case, coming, from all places, FOX NEWS:

I notice that the interviewer kept trying to badger the doctor into admitting that the dystonia was caused by a flu vaccine. It’s highly unlikely that it was. Then there was another video in which Dr. Stephen Grill from the Parkinson’s and Movement Disorders Center of Maryland describes why Jennings almost certainly doesn’t have true dystonia:

Finally, here’s a good video that looks at all the possibilities, from the dystonia being psychogenic to its actually having been caused by the seasonal flu vaccine, and concludes, quite reasonably, that even if the dystonia were caused by flu vaccine it’s the first such reaction ever recorded. Even in that worse case scenario, it would be a reaction that was not just one in a million but one in many, many millions and thus a statistically negligible risk compared to the risk due to the flu:

Don’t get me wrong. I do feel sorry for Desiree Jennings, whether her dystonia is psychogenic (by far the most likely possibility) or not (far less likely based on the videos of her movements that have been circulating on television and online), whether it was caused by vaccines (incredibly unlikely) or not (the most likely scenario). “Psychogenic” does not mean she is crazy or mentally ill, and does not mean she is faking, although the anti-vaccine loons who point to her as “evidence” that the flu vaccine is harmful will almost certainly caricature this argument as a heartless dismissal of her symptoms as her “faking.” It also does not mean that she can control her motions. The mind is very powerful, and she is likely not even consciously aware of what is going on. Moreover, I am not trying to diagnose her. I’m not a neurologist. However, as others have pointed out, she has placed herself in the public domain, and videos of her movements and interviews with her are being circulated far and wide to promote the idea that the flu vaccine is what caused her problem. What she has placed in the public domain and what others have said about her are fair game for discussion, as far as I’m concerned.

So is her exploitation by the anti-vaccine movement.

Unfortunately and predictably, J.B. Handley and Generation Rescue have taken on the “vaccine injury” case of Desiree, promoting it as “evidence” that the seasonal flu vaccine (and, by implication, that the H1N1 vaccine) is not safe. Even more cynically, Generation Rescue’s spokesmorons Jenny McCarthy and Jim Carrey have “reached out” to Ms. Jennings. This is such an astonishingly cynical move, even by the usual low bar that J.B. Handley sets for cynical moves. This would be true regardless of whether Ms. Jenning’s disorder is psychogenic or not–or even if it is ultimately linked to the seasonal flu vaccine. Handley’s using Jennings for his own purposes in order to promote the idea that vaccines cause autism; he almost certainly cares little for her suffering except as far as he can use her case for his own purposes. His interest in her is likely pure exploitation and how he can use her story to frighten people about the flu vaccine. If Ms. Jennings’ disorder is psychogenic, then Generation Rescue looks even more cynical, because all the attention she is getting for her story, thanks to credulous news reporters and Generation Rescue, could well be providing positive reinforcement for her psychogenic disorder and keeping her from undergoing what could be potentially effective therapy to eliminate her psychogenic dystonia.

Worse, as Steve points out, many cases of psychogenic disorders resolve spontaneously. Likely (and I sincerely hope) Ms. Jennings’ case will be just such a case that resolves spontaneously. However, now she is in the clutches of Generation Rescue and will probably accept therapy from DAN! doctors, which GR supports:

One day after our story aired, Generation Rescue, an organization founded by actors Jenny McCarthy and Jim Carrey , reached out to Desiree.

“They are extremely helpful,” Desiree said. “They have a lot of doctors that deal with vaccine interactions, and they have sent us so many other stories similar to mine. Unfortunately a lot of theirs are with children, which is worse. I can understand it happening to an adult, but not a little child that hasn’t had a chance to live their life and can’t speak, so I want to speak. They can’t, and I want to help them, too,” says Jennings.

As I said, Generation Rescue was breathtakingly cynical in how amazingly fast it leapt upon this story to link it to its promotion of the myth that vaccines cause autism. No doubt doctors or practitioners recommended by Generation Rescue will use their usual quackery (i.e., “biomedical therapy” for “vaccine injury”) to “treat” Ms. Jennings. If and when her psychogenic dystonia spontaneously resolves, they will declare victory and use that resolution as “evidence” that her dystonia was due to “vaccine injury.”

Just wait. That’s the next story. I predict it will arrive before the end of the year, spring at the latest. Either that, or Jennings’ story will fade away if Generation Rescue doesn’t get any traction from it. Or maybe she’ll end up on Oprah’s show within the month. (November is a sweeps month, after all.) In the meantime, I can only demand of Jenny McCarthy, Jim Carrey, J.B. Handley, and Stan Kurz:

Have you no shame?

On going back to look at some of the links again, I begin to wonder if maybe they do have some shame, after all. The link to Desiree Jennings’ page on Generation Rescue that was touted on Age of Autism is no longer functional. The page has apparently been removed. I wonder why.

Maybe J.B. Handley does have a sense of shame, after all. He should. Then again, maybe not. After all, he thought nothing of using sexist slurs against Amy Wallace, and AoA is still promising an “update on her condition soon.” Maybe the update will include an explanation of why Generation Rescue so quietly removed its support page for her, and maybe Generation Rescue will explain why, if it is an “autism advocacy” organization rather than an anti-vaccine organization, it spends so much verbiage on the flu vaccine and the HPV vaccine, when neither could, even in the most fevered imaginations of anti-vaccine loons, be linked with autism.

ADDENDUM: Steve Novella has provided a followup to his original post this morning. It looks to me as though Generation Rescue was so anxious to jump all over the Jennings story to promote its anti-vaccine propaganda that it is now having to backpedal furiously as more and more information comes out that strongly suggests that Desiree Jennings does not have true dystonia after all:

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.

What a shock.

It looks to me as though Stan Kurtz and J.B. Handley got caught with their pants down. On the other hand, as I mentioned in the main post, as of this morning, AoA is still hyping the story. They even promise “to update you on her condition soon.”

I can’t wait for that “update.”

It looks to me as though someone at AoA didn’t get the message after Generation Rescue took down the links to its “help Desiree” page, which is hilarious, actually, given that AoA is a wholly owned subsidiary of Generation Rescue–its propaganda blog, if you will. It’ll be very interesting to see what J.B. Handley and Stan Kurtz say about the case if they ever post about it again. Does anyone want to take any bets over whether J.B., Stan, Jenny, and Jim ever admit their mistake? I’d bet no, but then that’s about as safe a bet as betting that the sun will rise tomorrow morning.

Unfortunately, none of this new information stops the true believers, as evidenced by this comment after this morning’s post at AoA:

Some times I think that there are some evil scientists behind these vaccines and they are rubbing their hands together in glee as they carefully mix up some kind of concoction to just see what effect it is going to have on the brain?!!!

Against such willful ignorance and suspicion beyond all reason, the gods themselves would contend in vain.