Feb 05 2010

Desiree Jennings – The Plot Thickens

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.

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23 responses so far

23 Responses to “Desiree Jennings – The Plot Thickens”

  1. DevoutCatalyston 05 Feb 2010 at 10:24 am

    “…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.”

    That’s what I want and it’s no small gift.

  2. superdaveon 05 Feb 2010 at 10:29 am

    I second the notion in the last paragraph. The most important fact in this case was the IE went to you for the follow up.

  3. CrookedTimberon 05 Feb 2010 at 10:39 am

    The segment airs tonight in Denver so I apologize if this was covered, but I’m curious what her parents reaction/involvement has been throughout. Did they believe the original diagnosis of psychogenic? Then why let her claim otherwise? Was she being treated for the psychogenic diagnosis by the original Johns Hopkins physician?

  4. cyberdracoon 05 Feb 2010 at 10:52 am

    I am grateful we have so many medical professionals who take the time to blog and keep in touch with the general populous.

    Its about time Inside Edition updated their shoddy journalism, but they still get it wrong on their site. Instead of an apology for not investigating the claims, they make her look to be the stole criminal as if it was faked for the press coverage.

    Unfortunately, not nearly as many people who saw the original story will see this update, and those dogmatically deluded will still believe in some erroneous connection. But we march out and point out the lies and misinformation that spreads like plagues-New age witch doctors beware, us you do not scare!

    Finally, Mr. Novella is treating the claimant as a doctor should, respectfully and without belittling-quacks take notice.

  5. Steven Novellaon 05 Feb 2010 at 10:53 am

    Crooked – I have no idea. I have no info on her parents. We also have no word from her Hopkins docs, except for the excerpt in the VAERS report.

  6. DonnaPageon 05 Feb 2010 at 12:30 pm

    What a brilliant and pleasing follow up. Whenever I am told now ‘What is the point?’ as us skeptics do still seem to be the minority, I will think of this entry and smile. This is when a movement starts making a noise.
    Excellent!

  7. erdrickon 05 Feb 2010 at 1:15 pm

    So, no stanky leg video?

  8. Philippon 05 Feb 2010 at 1:17 pm

    “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.”

    While I fully agree, I’m not optimistic about that changing anytime soon. For every journalist who does his homework, checks the facts and decides not to go for the story, another ten probably will.

    The only thing I am hoping to see change (thanks to blogs), is skeptical reports showing up earlier, which would already be a really valuable achievement.

    Any chance the Inside Edition segment will be available online?

  9. Davehon 05 Feb 2010 at 1:42 pm

    The clip appears on You Tube here: http://www.youtube.com/watch?v=Kpe1u4cKbTk

    Good to see a followup on this story, it was rather disappointing how much of a failure it was in regards to science reporting.

  10. Davehon 05 Feb 2010 at 2:44 pm

    Urgh, the clip I posted above does not appear to be the whole clip and seems to have been posted Dr. Buttar himself.

    Sorry about that, I posted it before I got to the end.

    Hopefully a complete clip appears soon.

  11. popwirelesson 05 Feb 2010 at 2:46 pm

    As a person with newly diagnosed focal dystonia I was unimpressed with the news hysteria over this. The process of seeking and getting treatment was long and painful. The news channel in question did all of us that have dystonia a great disservice. The YouTube video became became something to laugh at, provoking anger at first and then just plain old disgust. I lost my job as a result of this condition and my spouse and I have had to make major lifestyle changes while I obtained treatment.

    Your article is an outstanding one. I see no fault in your logic or your approach and I am glad that you and other great doctors stood up for the 250,000 of us in the US that actually have dystonia.

  12. Mkey1on 05 Feb 2010 at 4:10 pm

    Hi -

    Have been following your blog for quite a while, but this is my first post here. I knew where the video of the entire segment could be found on the Web, so thought I’d create an ID and share the info.

    Here’s the link:

    Inside Edition Video

  13. CaladanGuardon 05 Feb 2010 at 6:11 pm

    My major issue with the new video…that accent is terrible.

    Not quite Australian, not quite British (Or any variation I have heard) My recommendation, she never go into acting, especially if she needs to not sound American for the part. It may sound like a minor complaint, but I think the major components have all been well covered by now.

  14. B-Dawgon 05 Feb 2010 at 8:45 pm

    Steve did an excellent job–in the 20 or so seconds they allowed him. He treated Desiree’s claim with respect, and refrained from speculating about possible motives for it. IE deserves credit, as well, for airing a followup that suggested their original coverage was not at all critical. Few media outlets bother.

  15. HHCon 05 Feb 2010 at 11:23 pm

    Viewed the Inside Edition video. The accent is not due to brain damage, but is a chosen cadence of speech which satisfies Desiree at the moment for self-expression.

  16. weingon 06 Feb 2010 at 7:16 am

    It looks to me that she had true dystonia as much as she has a true Australian or British accent.

  17. Marshallon 09 Feb 2010 at 11:12 am

    Woohoo, site back up!

  18. Lenoxuson 09 Feb 2010 at 3:30 pm

    The thing I always like to keep in mind about science versus anti-science is that, to its credit, science never takes on “Causes” as being more important than the evidence. So, for example, if someone claims a bad reaction from a vaccine, she or he is not, contra the antivaxers, hounded into silence, but patiently and empirically studied.

    There are plenty of known vaccine complications, just not at a high enough rate to make vaccination not worth it. I think it’s somewhat “telling” (inversely speaking) that this is not some covered-up fact but admitted right up front, and that everyone in line for a jab has to look at and sign the waver discussing the risks.

    (If “Big Pharma” were as powerful as it’s supposed to be, we would never hear about risks of anything, especially not anything with as low a profit margin as vaccines. Most alties simply take the list of all the scary complications at face value — look! scary! — and not pause to consider why they suddenly trust a source they never trust otherwise. If they were consistent, they would have to argue that stories of complications are some kind of “false flag” thing, meant to distract us from the true re-infection rate, or something.)

    Suppose that homeopathy somehow had a rate of complications similar to that of vaccination. Would homeopaths admit, study, and try to minimize it? Or would they deny them just as fervently as they affirm the remedies’ “main” effects?

  19. modoc451on 09 Feb 2010 at 5:29 pm

    The accent sounds like a combo of British and Aussie to me. Desiree is a victim, but she also seems like she’s playing the part of the victim, with her strange walking behavior towards the end of the video. Maybe she feels that she has to keep up appearances so that AOA keeps supporting her.

    Steve, you looked great in the interview. When the producers talk to you about “doing doctory stuff”, such as putting the images on the x-ray viewing box, do they suggest what you do, or do you come up with that on your own? And, if you come up with it on your own, shouldn’t you get a little kickback, for doing their job for them?

    Also, w00t for the site being back up!

  20. TsuDhoNimhon 12 Feb 2010 at 1:32 pm

    Wasn’t Buttar seeing her for free, out of the goodness of his slimy scum-sucking heart?

  21. Neuroskepticon 13 Feb 2010 at 4:15 am

    “Her current symptoms seem to be speaking in a British sounding accent. ”

    Hey, if that’s a disease, I’m a chronic case…

  22. [...] The Desiree Jennings Case, a Win for Skepticism By Page, on February 23, 2010, at 7:03 am I don’t usually write a post that solely tells you to read another blog post, but in the strange case of Desiree Jennings, Steve Novella has become something of a primary reference. I recommend his post on this case penned at Neurologica. [...]

  23. [...] taken the H1N1 vaccine said that the reason they didn’t take the vaccine was because they saw Desiree Jennings on YouTube. This makes me think, more than ever, that blogs such as this one and others are [...]

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