Oct 30 2009

The Dystonia Flu-Shot Case

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 panic over the vaccine, however, is entirely manufactured, primarily by dedicated conspiracy theorists and anti-vaccinationists, and then aided by irresponsible media. There have been two stories in particular about alleged severe reactions following vaccines recently, one dealing with the HPV vaccine and the recent cased of what is being called dystonia following the seasonal flu vaccine. The young girl who died within hours of getting the HPV vaccine was found to have a heart defect, and her death had nothing to do with the vaccine, so that story was rather short-lived.

The new case making the rounds, however, appears to have some legs. It is getting international news attention, and I am being flooded with e-mail requests to analyze the case.

This is the story of Desiree Jennings, who is a 28 year old cheerleader who was apparently healthy until August when she received the seasonal flu vaccine. Ten days later she developed a severe respiratory illness, probably the flu, requiring hospitalization. She then developed  an apparent neurological reaction in which she has difficulty speaking and walking, with involuntary muscle contractions and contortions. Her symptoms (including speech) are relieved, however, by walking backwards or by running. She also seems to have attacks of muscle contortions.

News reports are presenting her story as a rare vaccine reaction. Take a look at the video of her movements on this news report also.

This case, of course, has been immediately picked up by the anti-vaccine crowd. Generation Rescue, Jenny McCarthy’s anti-vaccine organization, wasted no time in exploiting this poor girl for their own agenda. She is now the latest poster child in the war against vaccines.

The media is largely covered in fail over their reporting of this case. They failed to ask basic journalistic questions – was the illness Jennings suffered from due to the vaccine,  was it confirmed as the flu, and was it the strain from the vaccine, was the incubation period compatible with a vaccine-induced flu, did she get the live-virus version of the vaccine, does she really have dystonia, has that diagnosis been verified, are their other possibilities, and what is the plausibility that it was caused by the vaccine?

None of these basic questions are addressed in the news reports – instead we are given an emotional report of a “one in a million” (a figure apparently pulled out of someone’s butt) vaccine reaction. Her episodes are called “seizures” when they are almost certainly not seizures. Her condition has also been called permanent and irreversible – without any justification.

Normally I try to refrain from making medical diagnoses in public cases – but Jennings has now inserted herself in to the anti-vaccine movement, and is using her own case to “warn about the dangers of vaccines.” To mitigate the damage to public health brought about by misinformation in this case, I think it is necessary to provide some expert opinion.

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.

Dr. Vinocur also points out that there are no reported cases of true dystonia resulting from the flu vaccine – this is not a known or established vaccine reaction.

Here is another interview on Fox with a movement disorder specialist, Dr. Stephen Grill, who concurs that (based upon the video, and not personal examination) Ms. Jennings does not have true dystonia but psychogenic dystonia.

It is therefore highly unlikely that whatever Jennings is suffering from now had anything to do with the flu vaccine she received in August. Unfortunately, this is not stopping irresponsible news coverage or exploitation by anti-vaccinationists. Further, Jennings is now in the hands of the Generation Rescue anti-vaccine quacks. I predict that they will be able to “cure” her, because psychogenic disorders can and do spontaneously resolve. They will then claim victory for their quackery in curing a (non-existent) vaccine injury.

In addition to the public harm, Ms. Jennings herself is likely to be harmed by the media attention her case is garnering. She likely could benefit from proper medical attention of her condition. But now she is publicly invested in her disorder, and is likely to accept care from those with their own anti-vaccine agenda. It is difficult enough dealing with psychogenic disorders without international public attention and controversy.

The medical community is always careful to point out that there are very rare reactions to vaccines. No one is claiming that they are 100% safe – no medical intervention is. But severe reactions are very rare. Meanwhile, about 36,000 people die each year in the US alone from the seasonal flu. That figure is likely to be higher this year, as seasonal strains are combined with the H1N1 strain to form a particularly bad flu season. We are fortunate that there are vaccines both for the seasonal flu and the H1N1 flu, which is particularly well targeted because we know the strain.

Other measures for minimizing spread of the flu are, as always, also important – wash your hands, stay home if you are ill, and avoid contact with those with respiratory symptoms. But the vaccines are likely to significantly reduce the spread and severity of the flu. And yet, fear-mongering and misinformation, such as with the Jennings case, are scaring people away from the vaccines, without good cause.

Like this post? Share it!

75 responses so far