Jul 26 2010

Desiree Jennings on 20/20

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.

Instead it was left to the science bloggers to point out that the video of Jennings was not showing dystonia (a specific type of movement disorder) but a rather textbook case of psychogenic symptoms. This is a difficult concept to get across, so much so that I wrote a dedicated blog entry to help explain it. The 20/20 segment did include my sound bite about this, but talking to people afterward they still have a hard time grasping psychogenic symptoms. Essentially, it is the brain’s response to stress in certain people, responding with very real neurological symptoms. But they are not based in any biological damage to the nervous system, rather it is a functional psychological disorder.

I also had a hard time getting the 20/20 producers to fully understand this, and further my degree of confidence about this. Jennings is actually a textbook case. I have now viewed considerable video of her symptoms, and showed it to various colleagues. There are a finite number of ways the brain and nervous system can malfunction (there are many more underlying causes, but only so many symptoms that can be produced). In other words, if one circuit in the brain is damaged (by whatever cause) it will produce a certain constellation of neurological findings with specific features. Jennings’ movements, evolving speech patterns, etc. do not fit into any known pattern of neurological damage. Rather, they have all the features of psychogenic symptoms.

The one that is perhaps easiest for people to understand is her vaguely British accent. She claims this simply results from her difficulty speaking, but again there are only so many ways that speech can be neurologically abnormal – none of them make you sound British.

The problem with the news reporting and public reaction is that it has fallen into a false dichotomy, and even the 20/20 story is headlined with “Medical Mystery or Hoax.” In fact, it is likely neither. The anti-vax community, which has embraced the story for its propaganda value, uses the hoax argument as a straw man. None of the science-bloggers discussing this case are making the claim that this is a hoax. But it’s clear that Jennings is not suffering from neurological damage (specifically mercury toxicity) from a flu vaccine.

There are some new tidbits that came out in the 20/20 report. First, we learn that Jennings did not discover that she can run, walk backwards or sideways until she read online that this can be a feature of dystonia. Although I knew this, I think this was also the first time it was reported that Jennings did not receive a diagnosis of dystonia at Johns Hopkins. She was diagnosed by her neurologist there with a psychogenic disorder – Jennings first heard the term dystonia from the off-hand comment of a physical therapist. She then latched onto that as her diagnosis.

For me the most interesting part of the 20/20 segment was the interview with Rashid Buttar, the doctor who treated Jennings with  chelation therapy. Buttar’s response to challenges from the interviewer were right out of the quack playbook. When asked why he is not doing any science to back up his extraordinary claims he responded, “Nobody said it was science.” Buttar tried to defend his unscientific practices, as purveyors of dubious treatments tend to do, by appealing to anecdotes. When confronted with the fact that anecdotes are not scientific evidence he essentially responded by saying – talk to my patients. That’s right – his answer was a further appeal to anecdotal evidence.

The 20/20 segment also did a fair job of making the point the Buttar uses chelation therapy to treat just about anything. They then brought on a toxicologist to explain that Jennings was exposed to less mercury in the flu vaccine that you would get in a tuna fish sandwich.

Unfortunately, the 20/20 exposure (although I saw it as negative) will likely just send more patients to Dr. Buttar.


I remain sympathetic to Desiree Jennings. She is an unfortunate women who is being exploited by the media, dubious doctors, and the anti-vaccine movement. What she needs is the delicate management of science-based practitioners who know how to deal with such cases. What she doesn’t need is a media frenzy that invests her in her psychogenic symptoms.

I was also very sad to hear that her search for a “miracle cure” is not at an end. She said:

“If I have to go over to China and do experimental procedures, I’ll find a way to get it all back,” she said. “It may take a while, but I will get everything back. I will find a way.”

No – don’t go to China. All you will find there are clinics looking to take money from desperate Westerners with resources.

It is for people like Desiree Jennings that I feel compelled to be active in exposing health fraud. I have paid close attention to this story because of the anti-vaccine angle, but there is also another story here. Desperate patients with controversial or problematic symptoms are prime targets for fraud and quackery. There are sharks in the water ready to gobble up any victims who come their way. Regulations have failed to protect them (as they have with Buttar, who was able to skirt attempts at regulatory discipline). The media largely act like accomplices. Academia is failing to adequately address these issues (with some notable exceptions – but they are exceptions).

The public is practically left to fend for themselves, at the most desperate times in their lives, against sophisticated con-games that prey upon their health. That is the real story I want the media to tell.

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