As promised, I watched the Inside Edition segment last night following up on the Desiree Jennings case. If you remember, she is the 25 year old woman who claimed to have a neurological disorder called dystonia following a seasonal flu vaccine. Her story never added up, and the video of her disorder that was made public (and disseminated, of course, on YouTube) did not show dystonia. Every neurologist who viewed the video and commented publicly, including me, were of the opinion that her symptoms were psychogenic.

The question at hand is whether or not she has a neurological disorder and whether it can plausibly be connected to the flu vaccine. I have made a strong case that her symptoms are not neurological but psychological (and to be clear, neither I nor any physician commenting on her case has accused her of lying or hoaxing her symptoms). Despite this, the anti-vaccine movement was quick to jump on the case and exploit Ms. Jennings for their own propaganda purposes. They were also quick to criticize me and others for commenting on her case, and in fact they grossly distorted the opinions we expressed.

Ms. Jennings eventually found her way to Dr. Buttar, who has been criticized by the North Carolina Medical Board for charging patients exorbitant fees for unproven and ineffective treatments. These complaints are still under investigation. Buttar diagnosed Ms. Jennings with both a viral encephalitis and mercury toxicity – when it would be impossible for her to have been exposed to both mercury and a live virus from the same vaccine. He treated her with chelation therapy and a few stints in the hyperbaric chamber, and then claimed a dramatic cure. In fact, I predicted this would happen and further predicted that an improvement in her symptoms that was too quick for any biological cause would confirm the diagnosis of a psychogenic disorder.

The story then faded, and my colleagues and I noticed that the anti-vaccine websites were strangely quiet about the case. Maybe they just had bigger fish to fry, but it always seemed that they were conflicted about this case, maybe sensing that this was not a good case for them. Although that did not stop them from proclaiming this case as a genuine vaccine injury (without any evidence) and from attacking me and others for discussing the case.

Another angle to this case was the mainstream media coverage. The story was made national primarily by an Inside Edition segment in which they took her claims of being horribly injured by the flu vaccine at face value. They did throw in a caveat that doctors say the story should not dissuade the public from the vaccine (the “not” was incredibly and deceptively edited out in the YouTube version of the story). But generally it was among the worst science reporting of 2009.

So I was a bit surprised when I was contacted by a producer from Inside Edition about a possible follow up segment on the story. He had read my blog posts on Ms. Jennings and realized they got the story entirely wrong. To his credit he wanted to do follow up (unfortunately rare in mainstream journalism) and tell the real story. This resulted in the segment that aired last night.

I have to say, at this point, that primarily I feel sorry for Ms. Jennings. She is mostly a victim in this case. In my opinion, she has a psychogenic disorder, and while this is a real disorder, it is psychological and therefore difficult for the public to understand. In a perfect world the media that first encountered the story would have done a bit of due diligence, contacted a doctor (preferably a neurologist or movement disorder specialist), found out that the story was fishy and then just not air it. Instead they got the story horribly wrong. This led to Jennings being exploited in my opinion by the anti-vaccine movement and Dr. Buttar.

And now her story is being exploited again. She is being shown to the world as having a socially embarrassing disorder. (I do not think it should be embarrassing, but mental disorders have an undeserved and unfortunate stigma – a topic for another time.)

Unfortunately, I do think the follow up is necessary. Ms. Jennings inserted herself and her medical story into the public debate about the safety of vaccines. If she wanted privacy, she should never have made her story public. Now that it is public, it is necessary to set the record straight so that people will not be wrongly scared away from a safe and effective vaccine.

So what is the follow up revealed by Inside Edition? Well, first of all Ms. Jennings appears to be walking, talking, and even driving without any difficulty. So the hysterical claims of her being “permanently neurologically injured” were of course untrue. However, when confronted, she says that she still has intermittent symptoms.

Her current symptoms seem to be speaking in a British sounding accent. It should be noted that her speech symptoms have changed and evolved considerably since her symptoms began. They were initially stuttering, then garbled, then spastic, and now accented. There really is no way to explain these various manifestations as neurological injury. I was asked about “foreign accent syndrome” – it is described in the literature as a rare reaction to brain injury. However, patients with this syndrome don’t really speak with a foreign accent – it only may sound that way to the untrained ear. What happens is that damage to the language center causes changes to the pronunciation of speech. In rare cases these changes may sound reminiscent of an accent different than the patient’s native accent. However, when carefully examined it is clear they are not speaking in a foreign accent but merely have neurologically impaired speech.

Another interesting revelation of the Inside Edition story relates to the VAERS report of Ms. Jennings’ alleged vaccine reaction. A report matching her story was found, and in the official report it says that her neurologist at Johns Hopkins felt that her condition was strongly psychogenic. This contradicts Ms. Jennings’ report (repeated uncritically by anti-vaccinationists) that her doctors diagnosed her with dystonia. Jennings has now confirmed to Inside Edition that the VAERS report is in fact hers.

This highlights one criticism that I have for Ms. Jennings – she cannot both make her medical story public, but then expect privacy for the actual relevant information. She should either put her records in the public domain, or she should have never made her story public in the first place. This is the specific issue at hand – what was her diagnosis. She claims it was dystonia, which was hard to believe. But now, because of the VAERS report and her admission, we know that her diagnosis was a psychogenic disorder.

Not that it really matters – the video evidence (which is now abundant) is sufficient to conclude she does not have dystonia and as more video is made public it only further supports the psychogenic diagnosis. I will add that Jennings gave Inside Edition a report from a new neurologist, who did conclude that she has a vaccine injury. I, of course, disagree with that opinion, and will point out that the opinion is based on the history being told, not elements of the exam to which I was not previously privy. I would further point out that being a treating physician often puts doctors in a difficult position, and the therapeutic relationship may require not being confrontational with patients.

We further learn from Inside Edition that Ms. Jennings is no longer seeing Dr. Buttar, and is somewhat upset at the large bill he gave her for his dubious services.

Conclusion

This is a sad case that should never, in my opinion, have become a national story. I think responsible journalism demands not showcasing a person who may be deluded. And further, the story raised scares about a public health measure, the flu vaccine, without vetting the story to see if it was even legitimate.

Everything that followed was damage control, and was unfortunately necessary.

The story also showcases, in my opinion, the callous disregard for truth of the anti-vaccine movement and some of its prominent players, such as Dr. Buttar. I do think they have egg on their face from this one.

And finally (if you will forgive the self-serving observation) the story highlights the new power of the science-blogging community. The Inside Edition follow up segment was entirely due to the science bloggers who covered the story – and told the real story behind the media sensationalism. We are influencing the media cycle in a good way. At the very least we are making ourselves a valuable resource to the mainstream media, and hopefully raising the quality of science journalism in general.