Swine Flu Vaccine, Dystonia, Cheerleaders, and the Truth

November 12, 2009

In my efforts to have a rational discussion about the H1N1 flu shot I have been increasingly confronted with the following fear, expressed most commonly by concerned mothers and teenagers:

Did you see that video on Youtube about the cheerleader who got the flu shot? Something called dystonia? She can’t walk unless she goes backwards. I don’t want to risk ending up like that.

Apparently Inside Edition broadcast a story featuring a woman who claims to have a movement disorder she attributes to an adverse effect of the seasonal flu shot. I had to take a look at this video along with the millions of other viewers. Here it is:

The video is confusing. The “seasonal flu shot” in question was given “August 23rd,” so we’re not even talking about an H1N1/swine flu vaccination. The movements and speech problems displayed are… perplexing. I’m not a neurologist, but fortunately there are experts who have had the courage to come forward and comment on this fearful video. From an article on Consumer Reports Health:

William Weiner, MD, Professor and Chairman of Neurology at the University of Maryland School of Medicine and Director of the Maryland Parkinson’s Disease and Movement Disorders Center, said this video has been making the rounds among colleagues who are dystonia experts. He reviewed the initial video as well as another showing Desiree in a recent 8k run.

“Without examining the patient, a neurologist cannot make a definitive diagnosis. But after viewing the multiple videotapes and discussing them with other dystonia experts there are many features that are not consistent with the diagnosis of true dystonia, but are much more in keeping with what is called a psychogenic movement disorder” he said. He further explains that several things about her case just don’t fit the diagnosis of dystonia:

* It was very sudden in onset—true dystonia has a slow onset and, if it progresses, does so very gradually
* The movements are not characteristic of dystonia or, for that matter, of any other known movement disorder
* Her speech has an unusual staccato pattern which is not seen in any neurological disorder and the degree of impairment is quite inconsistent
* The return of all normal motor behavior and speech when running forward is not consistent with true dystonia
* The report of additional neurological problems such as paralysis of the tongue, but normal speech while running is not consistent with true neurological problems

While physicians, including Dr. Weiner, are generally reluctant to discuss cases of patients that they haven’t personally examined, Dr. Weiner spoke out because of the ramifications to consumers. “This has nothing to do with the flu vaccine. There are no previously reported cases of dystonia following the flu vaccine. This is a public health policy issue because people are being scared away from getting vaccinated,” he said.

[ADDENDUM - the cheerleader has now been "cured" of her "illness", with stunning rapidity and a slick public relations effort courtesy of an anti-vaccination group]

Steven Novella, in his neuroscience blog, highlights additional physician insights:

(Dr.) Leigh Vinocur, an emergency room physician, was interviewed (ironically on Fox News) 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.

Respectful Insolence, a stalwart defender of reason and rationality in the realm of vaccination truth, has already written about this video. His blog post is a must-read for those hoping to make some sense of this issue:

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.

So let’s look at the big picture. Seasonal influenza has been estimated to contribute to the deaths of 36,000 people in the United States every year. Seasonal flu shots provide marginal or significant protection, depending on which clinical study, age group, or underlying health status is considered.  Some recent evidence, however, suggests that flu shots might not work as well as we think for elderly people, as discussed in this rather cynical article in The Atlantic:

Jackson’s findings showed that outside of flu season, the baseline risk of death among people who did not get vaccinated was approximately 60 percent higher than among those who did, lending support to the hypothesis that on average, healthy people chose to get the vaccine, while the “frail elderly” didn’t or couldn’t. In fact, the healthy-user effect explained the entire benefit that other researchers were attributing to flu vaccine, suggesting that the vaccine itself might not reduce mortality at all.

This article has been effectively deconstructed and dissected by Science-Based Medicine, showing yet again the critical thinking and public discourse that blogging facilitates.

What if the 14,400 plus influenza vaccine articles on Pubmed are wrong, all the biology and virology and pharmacology and clinical trials about influenza are wrong? What if every brick in the wall was an illusion and the edifice of flu treatment is wrong. What if a few brave souls can see the real truth. I look forward to a review of the 50 years of influenza research in all its complexity. It’s a huge literature, with multiple lines of evidence all converging on the conclusion that vaccines and antivirals are effective against influenza.

As mentioned above, there are many studies proving the benefits of influenza vaccination, including multiple studies in elderly populations.  The difficulty in synthesizing all the studies together is explained by this CDC document on Flu Vaccine Efficacy, which needs to be read several times to fully grasp. Overall, seasonal flu vaccine efficacy can be thus summarized:

Overall, in years when the vaccine and circulating viruses are well-matched, influenza vaccines can be expected to reduce laboratory-confirmed influenza by approximately 70% to 90% in healthy adults <65 years of age. Several studies have also found reductions in febrile illness, influenza-related work absenteeism, antibiotic use, and doctor visits.

In years when the vaccine strains are not well matched to circulating strains, vaccine effectiveness can be variably reduced. For example, in a study among persons 50-64 years during the 2003-04 season, when the vaccine strains were not optimally matched, inactivated influenza vaccine effectiveness against laboratory-confirmed influenza was 60% among persons without high-risk conditions, and 48% among those with high risk conditions, but it was 90% against laboratory-confirmed influenza hospitalization (Herrera, et al Vaccine 2006). A study in children during the same year found vaccine effectiveness of about 50% against medically diagnosed influenza and pneumonia without laboratory confirmation (Ritzwoller, Pediatrics 2005). However, in some years when vaccine and circulating strains were not well-matched, no vaccine effectiveness can be demonstrated in some studies, even in healthy adults (Bridges, JAMA 2000).

Separate summaries of vaccine efficacy can be found for specific groups including the immunocompromised, elderly, and children. Although the absolute effectiveness is difficult to pin down, and seems to be as shifting as the influenza virus itself, there are no credible studies that I know of showing overall population harm from the flu shot, although rare individual complications are reported.  Here is the CDC’s guide to the risks of influenza vaccination.

Perhaps a more realistic assessment is that the flu shot is variably effective in preventing harm from the flu, depending on a host of variables including the year, age of the recipient, and underlying health of the patient. A full effort to combat the flu each year must not devalue other preventative measures like hand washing, good hygeine, staying home when sick (unless severely ill), avoiding those who are sick, proper use of antivirals, pneumonia vaccination for those in which it is indicated, antibiotics for those with possible bacterial coinfection, etc.. Having received a flu shot should not make us feel invincible.

Getting back to the video of the aspiring cheerleader with dystonia versus psychogenic movement disorder… Hopefully the commentary provided by the additional experts will allay some fears about the absolute risks of this reaction happening to you, if not add clarity to what truly ails her.  She did not report this reaction after the H1N1 shot.  The decision to get any kind of flu shot should be made in consultation with a physician you trust, fortified by your own research. I think the CDC is a fair place to start. Today’s news that H1N1 swine flu has killed an estimated 3,900 10,000 Americans, and infected an estimated 22 50 million Americans, leading to about 98,000 213,000 H1N1-related hospitalizations might influence your decision.

The following is my own anecdotal experience, and should therefore be the LEAST convincing bit of evidence you consider, yet I know we all like to hear human stories like that of the cheerleader. I got the seasonal flu shot in October 2009, marking at least the 12th year in a row I’ve received the shot. One or two years I had some aches and stuffy nose, possibly unrelated. *Knock on superstitious wood* I’ve not suffered a flu-like illness in any of those 12 years, but have had multiple “colds.”  I received the H1N1 shot 2 weeks ago today. For four days after the shot I had a stuffy nose and fatigue. This was probably unrelated because I felt a “little cold” coming on the day before I got the shot.

I can, however, report a strange and undeniable craving for bacon… I’ve eaten it twice in the past two weeks, which is unusual for me. Perhaps all the talk of “swine” has been subliminally to the benefit of the pork industry, but I’ll leave that conspiracy theory for others to run with.

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