Several months ago I was interviewed by 20/20 for a follow up news report on Desiree Jennings – the cheerleader who claims to have acquired severe dystonia from a flu shot – and that show just aired on Friday. I have been following this case as the core claim is neurological and has been grossly misrepresented in the media.
20/20 did a fair job, but it’s hard for me to tell what impression the average viewer will come away with. The first 2/3 of the story was presented from a credulous point of view – essentially just telling Jennings’ story without any hint of skepticism. But then the editorial tone flips, and they give the “other side.” They did a fair job in this section of the segment, and my point of view was reasonably represented. And then at the end they leave the audience with the question – real or fake? Not the best format from a scientific point of view, but it could have been worse.
To summarize the story, Jennings, who was 28 at the time, received a flu shot in August of 2009, after which she started to develop dramatic neurological symptoms including shaking and difficulty speaking. Her story was picked up by a local news station, and from their it was picked up by Inside Edition and became a national story. Jennings spread a considerable amount of unwarranted fear about the flu vaccine, aided by a credulous media who failed to do even basic vetting of her story. In an ideal world, the original reporters would have showed their video to an actual neurologist and the story would have been nipped in the bud right there. But that’s not he world we live in.
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.
I was recently interviewed by Inside Edition for a follow up story on Desiree Jennings – the young woman who alleged to have dystonia as a reaction to the flu vaccine. (See here for my original post, and there are a few follow ups shortly after.)
Inside Edition initially broke the story nationally, and did not do a very good job – they basically accepted the story at face value and did not consult appropriate experts to give proper context to the story.
Well, it seems that they are now willing to do a follow up report and even try to correct their prior reporting. The show in which I am interviewed will air tonight on Inside Edition. I am always interested to see how these shows turn out – it is almost impossible to tell from the interview itself. Typically a very small percentage of the on-camera interview is used and anything can happen in the editing room. But hopefully they will do justice to the story.
I can tell you, there have been some interesting developments they will reveal on the show (which I cannot discuss until after it airs). I will write a follow up tomorrow after I see the show.
I have never been a fan of the local news, where journalistic standards are often annoying. Often the local news is an exercise in insulting the intelligence of the viewer. But at least the local news was local. With the internet, however, local news reports are increasingly being picked up by larger national outlets and amplified manyfold. So now I get to be subjected to the worst of local news reporting from all over the country.
Local news reporters brought us the Desiree Jennings story, and now they bring us the story of digital drugs, or i-dosing. From Oklahoma News 9 we learn that parents need to be very concerned (maybe they should even panic) – their kids are downloading digital drugs and listening to them on their i-pods, and this may be a gateway drug to the hard stuff.
Read and watch the report. I love the picture of the teenager with a towel on his face listening to headphones – real trippy. I wonder how staged that photo was. If you have ever dealt with a local news reporter you would wonder the same thing.
Chelation therapy is a legitimate FDA approved therapy for heavy metal poisoning. It uses either oral or intravenous drugs (EDTA – Ethylene-diamine-tetra-acetate) that bind to heavy metals and make them easier to excrete. The treatment is FDA approved for lead poisoning, hypercalcemia, and digitalis toxicity.
However, as discussed in a recent Forbes article, chelation therapy also leads a double life, and at the fringes of established medicine it has been used off label for decades to treat a long list of diseases and disorders. The first target of fringe chelation therapists, such as Dr. H. Ray Evers who was an early proponent, was cardiovascular disease. Dr. Evers won a court ruling in 1978 validating his right as a physician to prescribe off-label medication. However, of interest Dr. Evers in 1986 had his license to practice medicine revoked for gross malpractice.
The claim for chelation and heart disease is that heavy metals cause the build up of plaque on artery walls, and this plaque can be melted away by leaching off those metals with chelation. “Bypass bypass” has been the slogan of proponents of this idea. It would certainly be nice if physicians could perform a lucrative procedure in their office and improve their patient’s health, and even avoid risky and more expensive interventions. Medical doctors (if not heart surgeons) have every incentive to accept and promote the claims of the chelation therapists – except that it doesn’t work.
I have been blogging this week about the Desiree Jennings case – the 25 year old woman who is telling the media that she developed a neurological disorder known as dystonia two weeks following a seasonal flu vaccine. However, the video of her movement disorder that was made public was not, in fact, consistent with the diagnosis of dystonia or any organic movement disorder, and therefore it is highly unlikely that her symptoms were a vaccine reaction. Every movement disorder specialist or neurologist who viewed the videos and voiced their opinion agreed that the signs she was displaying on the public video were most consistent with a psychogenic movement disorder.
We were also careful to point out that this does not mean she is “faking”, that her symptoms are not real, and that she is not suffering from a genuine and debilitating disorder. Simply that the nature of the disorder is likely psychogenic and not due to any specific brain pathology, caused by a vaccine or anything else.
Jennings claimed, however, that her doctors at Johns Hopkins diagnosed her with dystonia and concluded it was from the vaccine. We have only her word to take for this as her doctors, understandably (given the rules of confidentiality) have not made any public statements. Jennings could give them leave to do so, but apparently hasn’t.
The recent discussion of the Desiree Jennings case has prompted speculation and misinformation about the nature of psychogenic illness. I therefore thought it would be useful to discuss the concept of psychogenic illness in general. The following is cross-posted also at Science-Based Medicine.
____________________
I have never used those words to a patient or about a patient. I have also never heard a colleague use any similar term to a patient. And yet on many occasions I have had patients ask me, “So you’re telling me it’s all in my head?”
The concept of what are now called psychogenic symptoms is a tricky one for various reasons. There is an unfortunate stigma attached to the notion that our brains can cause physical symptoms. Making the diagnosis is complex. Outcomes are variable and are hampered by the difficulty in communicating the diagnosis to patients. Psychogenic symptoms often mask underlying physiological disease. And the risks of both false positives and false negatives are high.
This complexity leads some to argue, in essence, that psychogenic symptoms do not exist at all – that the diagnosis is a cop out, a way to blame the patient for the failings of the physician. But this approach, ironically, is a cop out, because it seeks to white wash what is a real and complex disorder with an overly simplistic and moralistic approach.
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.
Robert E. Bartholomew is a social scientist who specializes in mass delusions. He describes them here, in an article he wrote for the NESS, but also in a longer article here for the Skeptical Inquirer and in his several books. About mass delusions he writes:
A collective delusion is the term most commonly used by social scientists to describe the relatively spontaneous spread of false beliefs that do not occur in an organized, institutionalized or ritualistic fashion.
Today, we live in a connected virtual community, and YouTube, Twitter, Facebook, and blogs, in addition to traditional media, are the medium through which community panic and delusions spread.
At this time there are two slow panics spreading through the community – fear of the H1N1 “swine” flu pandemic, and fear of the vaccine to prevent H1N1 flu. Regarding the pandemic itself – this is a real threat, it is just not known at this time how severe it will turn out to be. So far it is looking like another seasonal flu in severity, but with some different features, such as a greater tendency to severely affect otherwise healthy individuals.
The NeuroLogicaBlog covers news and issues in neuroscience, but also general science, scientific skepticism, philosophy of science, critical thinking, and the intersection of science with the media and society.
Dr. Novella is also the founder, executive editor, and regular contributor to Science-Based Medicine, a blog dedicated to issues of science and medicine.
If you would like to contact Dr. Novella to suggest a topic for this blog, ask a question, or give feedback, you can e-mail him directly at: [email protected]
Dr. Novella is also available for public lectures, radio, podcast, or other media appearances. Contact him through the e-mail address above to request an appearance.
5/2/2015 – Live streaming celebration of the 10 year anniversary of the SGU. Noon to 10pm Eastern. http://www.theskepticsguide.org/sgu-10-hour-podcast-2015
Dr. Novella is an academic clinical neurologist at Yale University School of Medicine. He is the president and co-founder of the 
