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Desiree Jennings on 20/20

by Steven Novella, Jul 26 2010

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 tell.

23 Responses to “Desiree Jennings on 20/20”

  1. Max says:

    “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.”

    Most of the methylmercury in tuna is absorbed into the blood, correct?

    • Øyvind W says:

      It is my layman understanding that the ingredients of both vaccines and tuna end up in the liver (where they are taken care of) before going to any organs.

    • Sue says:

      Even more important, only a very few vaccines theses days have any mercury in them at all and the flu vaccine is not one of them. So if she did have mercury poisoning then she didn’t get it from a vaccine! (BTW i do NOT think this resembles the symptoms of mercury poisoning! – agree it is psychogenic.

  2. My favorite part of the segment is Desiree saying “I know it’s not psychogenic,” maybe I’m the one with the misunderstanding of the term, but it seems to me that, that statement alone would prove she doesn’t understand the word “psychogenic.”

    • Max says:

      No, that statement alone doesn’t prove it. Like, if you break your arm, you know it’s not psychogenic.

      • LovleAnjel says:

        If she knew it was psychogenic it would no longer be psychogenic.

        A placebo is only a placebo if you don’t know it.

      • Max says:

        “If she knew it was psychogenic it would no longer be psychogenic.”

        Then what would it be?

      • LovleAnjel says:

        Once you grok a psychogenic ailment, it likely resolves or changes, just like if you grok that you’re taking a placebo, it loses effectiveness.

      • NightHiker says:

        Not necessarily. If placebos only involved conscious feedback processes they would not work on animals and babies, as they do. So if it has subconscious components, it’s feasible to think they might still have some effect even if you find out it was a placebo. I would guess the same is true for psychogenic symptoms.

  3. NightHiker says:

    One thing I didn’t see mentioned here is the fact that even if she had adverse reactions from the flu shot (though it doesn’t seem to be the case), it doesn’t mean the flu shot should be avoided overall – in other words, the epidemiological side of it didn’t seem to be addressed (from what I read here, had no access to the show): that many more people likely were benefited by it, maybe even saved. It may seem cold to most who know people who did have adverse effects, but it’s the biggest reason we do vaccination campaigns.

  4. Patrick says:

    Speaking of toxicology stuff, I saw this on the net today (about cosmetics, specifically Anne Leonards attack on consumerism and cosmetics). I’m not a toxicologists so I don’t know if the video is a sound criticism of Leonard’s work (but the criticism does sound legit as he shows his sources).

  5. Patrick says:

    Unrelated to this blog, but related to a post of mine from several weeks ago on environmentalism and opportunity costs:

    bio fuel sucks and probably doesn’t help the environment at all… Cost of $275 to $750 per ton of C02 removed (depending on biofuel type) but this doesn’t include the cost of all the C02 put into the air creating the biofuel in the first place…..

    The environmentalist movement needs a healthy dose of Skepticism injected into their policy prescriptions.

    • erikthebassist says:

      As you said, not related to the blog post, so why did you post it here? To promote your own blog? Tacky, not the way to get readers.

      • Patrick says:

        Did I post a link to my own blog? (I do have one). No, I posted a link to a government report on biofuels… In fact, as far as I can remember, I’ve never posted a link to my blog. I guess you didn’t bother reading the link, otherwise you would have seen CBO.GOV on it…

      • erikthebassist says:

        You know what, you’re right. I apologize, I didn’t read it very closely. It was a gut reaction, late at night, with bleary eyes and a couple beers. I retract my criticism.

    • MadScientist says:

      Worse still, on a global scale there is barely enough land available to produce food crops. To produce bio fuels from crops raised for the purpose means competing with resources for food production. At the very least more land (grassland or forest) will be cleared for biofuel production operations. Biofuel production may also compete with food production for fertilizers and water resources. I’d file it under “ideas that don’t work”, along with “let’s plant trees to cut CO2 emissions”.

  6. The Blind Watchmaker says:

    Just to clear up the issue about mercury in the flu shot and in tuna, consider the following.

    The adult flu shot (not the baby flu shot) is the only vaccine we routinely give that is still preserved with thimerosal. A standard adult dose contains 25 micrograms (that’s 25 millionths of a gram) of the less toxic ethyl-mercury. A standard can of albacore tuna contains 75 micrograms of the more toxic methyl-mercury. Even if the 2 kinds of mercury were equally toxic, it would take 3 flu shots to equal one can of albacore tuna! And I like tuna. Swordfish is good too. It would take about 7 adult flu shots to equal one 6 oz piece of swordfish. We could go on, but you get the picture.

  7. MadScientist says:

    That’s really sad. I used to think that Jennings was putting on an act (then again I know nothing of psychological disorders). OK, I’ll move her out of my “quack” list and into my “victim of quacks” list.

    I’ve been stuttering a lot again lately (which I hadn’t done in years) – I wonder if it’s because my neighbor got the flu shot. Then again it could just be that lack of sleep thing …

  8. number mystery says:

    I wrote a response based on the proposed – psychogenic – explanation.

    On 20/20: There was ‘some Doctor’ consulted on 20/20 for the woman, and he used hodgpodge pseudoscience and said it was ‘psychogenic’ as the problem. This is the ‘real doctor’ who is making up for the ‘fake doctors’. First of all, he has to know how the pathogen (somehow from the vaccine) altered specifics at the cell level in the brain, specifically what’s causing what. Huntington’s disease is a clumpy protein which gets in the way of microtubules in dopaminergic cells in the dorsal striatum – it’s actually a protein. It’s ‘clumpy’ because of a nucleotide error, which affects the structure of the protein, leading to the messing up (somehow) of the cell highways (microtubules) in the cell universe (nerve cells).. leading to the nerve cell’s collapse (it’s believed), leading to loss of basal activity in at the circuit level in the primary motor pathway, leading to spontaneous action potentials going thru the whatever the destination is. Try that level of explanation (molecular, intracellular, to circuit, to systems) to the explaination this doctor gave – he says ‘psychogenic’ – is what explains her curious symptoms.

    I don’t believe the ‘skeptic’ authority with the m.d. line offered any incite into Nature, nor has any desire whatever to delve into the root cause of the mystery of the pathogen and how this broiught on Desiree’s behaviors.

    I am a firm believe that people who use the authority of their position, especially of medicine, will have to remain in purgatory for 1 extra day for each time they use it on shady grounds.

    I do believe the psychogenic suggestion is frowned on by god, and worthy of hellfire.

  9. number mystery says:

    For the curious, lovers of Oliver Sacks and Ramachandran.
    Imagine what Sacks would say and consult in this situation.


  10. kabol says:

    wow — people even have psychogenic seizures that get misdiagnosed as epilepsy.

    medscape article here

    i guess that there is plenty of pickings for not only medical quacks, but also the paranormal peeps who like to pretend that they’re excorcists and whatnot.

  11. Tim says:

    As an ER doc, I have seen lots of patients with psychogenic seizures or “pseudo-seizures”. They can have a real seizure disorder as well as the psychogenic kind. Typically they are young women with a history of mental health problems (anxiety, depression, personality disorders) and often have difficult life/social circumstances.

    Pseudo-seizures can look very frightening to lay people, but to someone who is experienced, they are usually quite obvious. There tends to be a generalized and random thrashing and rolling around, rather than tonic-clonic jerks. Patients are typically able to understand and follow commands in the middle of a “seizure”, which is impossible in a true seizure. They typically exhibit self-protective behaviours, which again is not found in true seizures. They usually have full recall of everything that happened around them during the “seizure”, which is again not typical of true seizures.

  12. Seth Crosby says:

    I actually wrote to Sacks to find out if he was going to weigh-in. His assistant kindly answered saying he would not unless he could examine her.