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.
Conclusion
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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23 Responses to “Desiree Jennings on 20/20”
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I’m glad I read your blog today. I saw a clip on Desiree last year and walked away thinking she was delibertately hoaxing us to get media attention and didn’t think too much about her after that.
Finding out that she has a real disorder and is pursuing the wrong diagnosis and treatments is truly heartbreaking. Particularly since she is just a pawn being used by others who see nothing more than a way to take advantage of her pain to promote their own agendas.
I don’t suppose she will see it either. As species we are so enamored by attention that its almost addicting and certainly distracting. She will probably not be able to give up the position that provides her the most validation.
Great post. It’s really unfortunate how a sensational news story can sway so many people.
The concept of proof being an RCT (or better – systematic review/meta-analysis, etc) as opposed to a few anecdotes here and there really need to be advanced by the scientific community more than anything.
tragic
Very tragic indeed… did you see how hot she was? I really like that they brought in a toxicologist who tells her she gets more mercury from a tuna fish sandwich than from a flu vaccine.
… …not that it has anything to do with anything but I did not think that she was that hot
On a related note, there was a good story on Chinese stem cell clinics and the false hope they cell on NPR’s Morning Edition today.
They mentioned the International Society for Stem Cell Research, which is developing a website where people can submit clinics and treatments for evaluation. Looks like it will be a valuable science-based resource for patients;
http://www.closerlookatstemcells.org//AM/Template.cfm?Section=Home
Steve:
Do you know if there is a full version of the show anywhere online? I could only find the 2:41 clip connected to the article.
Some mentally ill inidividuals prefer to open their locked door with the wrong key. Should we admire their determination?
modoc and others: I believe they will post the full episode on the ABC website. It is not up as of yet, but it appears that they do post every 20/20 episode several days or a week after they air. I will keep checking.
Objectively, she is an attractive woman. I do not think that anyone can say she is unattractive. Unfortunately for her, I think this contributed to the abuse of the story across the media. The story on youtube ran “Flu Shot Permanently Disables Redskins Cheerleader” (at least that was the first time I had seen it). Of course, her real job was in business and the cheerleading was just a side gig for her. Thus, in my opinion, it was inserted into the story to just make it more dramatic. From the above storyline, we know that she must be pretty darn goodlooking if she is a professional football cheerleader. Would it had acquired such widespread viewing if it had read “Flu Shot Permanently Disables Ugly Hermit?” Probably not.
I am glad you had time to explain to explain yourself but I do wish they had not presented this as such a false dichotomy. I wonder how much symantics play into this controversy. Imagine if a doctor told her that she had Smith syndrome, the treatment for which is relief of stress through therapy and medication. I bet if that had happened this controversy would die. On the other hand people might claim that vaccines give you smith’s disease.
I saw the story on Friday, and tuned in because I wanted to see how they would cover it. To my surprise, I saw Dr. Novella! I thought it was generally pretty fair, but I agree about the false dichotomy of Flu shot vs. Hoax. They didn’t really delve into either of those. The flu shot stuff seemed secondary and the ‘other side’ as they presented it didn’t seem like you/they were calling it a hoax.
I did like how Buttar came off as a total quack.
My mom thinks it is a hoax, which is a little surprising. Maybe it is because she didn’t understand the psycogenic aspect.
I thought it was more fair than many 20/20 things I’ve seen lately.
objectively? *ironic smile*
but I see what you mean, it is obvious that allot of people find her attractive personally I think she looks okay, but I see better looking girls on my way to the supermarket
Seriously, I believe there are objective measures of attractiveness (facial symmetry, for example). There is also a huge component of subjective attractiveness. But if you take people like Brad Pitt, Adriana Lima, Taylor Lautner, or Rihanna (depending on your sexual preferences), they may not be your “type” but no one can seriously argue that they are ugly. Likewise, Desiree Jennings may not be Aphrodite, but she at least falls into the positive category.
Unfortunately for my argument, the psych literature on attractiveness is not very clear. I will stubbornly hold my viewpoint regardless!
I see what you mean, and I agree that there probably are objective criteria for looks that would hold true for at least the vast majority of humans (or depending on how general you are when you define those traits, probably all humans). Still it iis a continuum and I am sure that you could find someone who, if they don’t think that Adriana Lima is ugly, still do not find her to be “that beautiful”… and who knows, there are guys who think that guys are sexy so clearly for some humans the evolutionary “presets” for what is supposed to be beautiful get a little distorted. Also, culture is definitely an important factor in the equation. In some cultures (such as Europe 300 years ago) fat people were considered the beauty ideal after all…
Interestingly though, symmetry is not always a sign of beauty. I can’t direct you to the article since it was some time ago I read this but I remember one experiment that looked at peoples perception of perfectly symmetrical faces acquired by mirroring one side of the face over the other. People perceived those faces as scary or ugly… (at the same time I know that there is evidence to suggest that symmetry in general is considered beautiful).
Suggests to me that some asymmetry is a good thing in some cases. Perhaps this could have something to do with the right-left brain asymmetries which seem to have been such an important factor in our development of higher capacities such as language? After all the right brain controls the left side of the body (although this is not the case for the face) and vice versa… (although they cooperate so much as to make this effect virtually insignificant for all practical purposes, this is not the case with horses for example…) maybe being able to show some asymmetries in your behavior/facial expressions could be considered healthy?
An interesting topic at any rate
Example:
http://i27.photobucket.com/albums/c192/jayson_ang2/Abstract%20and%20Still%20Life/5a5939c4.jpg
Steven, you say the “20/20 story is headlined with “Medical Mystery or Hoax.” In fact, it is likely neither.”
Is there good reason to rule out it being a hoax? How difficult is it to fake psychogenic symptoms? (Especially ones that you don’t exhibit until after you read that you’re supposed to be exhibiting them?)
I understand you’re diplomatic, but sometimes people are just lying.
I don’t think that this began as a hoax at all. So many people get the seasonal vaccine that some of them are bound to have been exposed to the flu just prior to immunization and take ill as a result. This may have been what happened to Deseree.
Most people experience muscle weakness as one of their flu symptoms and with being in bed for days on end with little to eat or drink, it can sometimes be quite extreme, especially if she became dehydrated. She may have had a bit of an electrolyte imbalance and if so may have been a bit short of breath and been focussed on taking deep breaths to compensate. This could now be why she feels she has to remind herself to breath at times. If she heard about the rare adverse reactions she may have been quite stressed about the possibility that she would be left permanently disabled. After the flu subsided her symptoms may have then became psychogenic. I am not a physician so of course I don’t really know if this could possibly have been what happened, but I wander about it anyway.
She was told that Dr Buttar’s treatment would help her and was able to walk, speak normally and eat without difficulty afterwards. It may be that her mind is so easily influenced that once hearing that someone was able to help her she became cured.
Upon leaving the clinic she had a reoccurrence of symptoms. I have to wander if that was as a result of unconsciously knowing the attention that she would be giving up now that she appeared well.
After seeing the footage of her coming from the store walking normally and now with hearing the British accent I believe it has gone from psychogenic to her now consciously exaggerating movements, as when she knew the camera was on her, she walked sideways to her car. But as I said I am not a doctor.
I think it is terrible the way she has been used. I know she did originally put herself in the spot light but truly believe she thought she was protecting people by warning them at first.
I do hope she is able to get her life back together.
tohs ulf ym yb egamad yllatnem neeb evah I pleh
I seems so – because it should be “degamad”
While I very much appreciate your need to present Psychogenic Disorder in a compassionate and non-judgmental light, I suspect you did tip-toe a little around the issue of her intent. What you are seeming to describe is a pure condition of some stressor that illicits an utterly unconscious and innocent functional response. While that effectively relieves the victim of any responsibility, a failure to recognize the true etiology can distract therapy and confuse family members as well as bystanders.
I have seen people trying to avoid jail by feigning coma and allow themselves to be intubated without any sedating meds. (After the tube goes in, the coma pretty quickly clears) I have seen very convincing seizures fail medical treatment that ultimately stop with me yelling “Would you knock this off” and the patient quietly responding “OK.” I have seen paralyzed patients get up and angrily stalk out when told that they can move their legs if they want to. I have seen sweet little old ladies drip blood in their urine and fake pain to get oxycontin for their children to sell. Physicians want to trust their patients, they want to sleuth out fascinomas. But sometimes when you hear hoofbeats, it’s not always a zebra. It took Pediatrics over 25 years to apologize for the Steinschneider study, that described familial apnea for what was later proven to be maternal infanticide.
We all get hung up on the question “Why would someone do that,” as if to say that because we can’t imagine a motivation, therefore one can’t exist. I don’t think you can often go wrong overestimating how manipulative and deceptive people can be. While we must always try to be compassionate, we must also be effective stewards of our diminishing medical resources. I see a lot of expensive MRIs being performed when it sometimes it is much more cost-effective to say “that’s your last Dilaudid shot.”
ddd – It is often difficult to infer motive in such cases. We do look for so-called “secondary gain” and when there is obvious secondary gain (such as getting out of prison, or a lawsuit) that is a red flag.
Without any obvious secondary gain, the only other thing you can do is try to catch the person in conscious fakery, which does happen at times.
But in a case like this without apparent secondary gain and without evidence of conscious fakery, we conclude that the symptoms are likely psychogenic.
I watched the 20/20 program on YouTube today.
The early psychogenic diagnosis was an interesting tidbit. I found it understandable that Jennings rejected that and latched onto a more plainly physical disorder, considering the stigma associated with psychological conditions. To in effect be labelled as someone with a mental illness must be anathema to many people whose life experience has been very positive and whose self-image is one of success and achievement.
But I’m curious what other reasons one might have for choosing their diagnosis in this way.