Nov 02 2009

Dystonia Case Follow Up

In an interview for the SGU Christopher Hitchens told me that typically, after publishing a story, only then do people contact him that he should have spoken to in the first place. My humble blog has nothing of the reach of Hitchens’ writing, but it is still occasionally the case that after posting a blog I am contacted by people I really wish I had spoken to before I finished writing it.

For example, on Friday I discussed the case of Desiree Jennings, the 25 year old woman who claims to have developed dystonia 10 days after receiving the seasonal flu vaccine. I reported that all of the neurological experts who viewed the videos of Jennings that were made public (including me) are of the opinion that she does not have dystonia. Rather, the signs she displays are more typical of a psychogenic movement disorder, and therefore not due to the vaccine.

There is another angle to this story, however, that I was not aware of. I was mostly interested in the vaccine angle, as the Jennings story has been exploited by the anti-vaccine movement to further scare-monger about the flu vaccine. There is also a dystonia community, and they were not happy about the Jennings affair either. In particular, a woman by the name of Rogers Hartmann, who suffers from dystonia, and who has been one of the main faces of dystonia activism to the media, contacted me.

The dystonia community is concerned that the fact that neurology experts are forced to go on public record that Desiree Jennings’ symptoms are more consistent with a psychogenic disorder rather than a true neurological disorder may generate confusion in the public about the nature of dystonia itself. Fair enough – although I thought the doctors who were interviewed on Fox were pretty clear. I will also add here that dystonia is a perfectly legitimate movement disorder. It is, in fact, a brain disorder that results in involuntary muscle contractions. It can be very debilitating. The Desiree Jennings case should not confuse anyone about the nature of true dystonia.

But there is more still. Generation Rescue, the anti-vaccine group started by J.B. Handley and now fronted by Jenny McCarthy, was quick to jump on this case as a legitimate vaccine injury. But they then quickly distanced themselves from the case, removing the web page they had set up for Jennings. Here’s why.

The story appears to have been broken by the Reporter Nicholas Graham discloses the Jennings is a colleague of his, and undoubtedly that is how he heard of her story. The story was then picked up by a Fox affiliate in DC, reported by Claudia Coffey. From there it was picked up nationally by Fox News and Inside Edition.

Generation Rescue president, Stan Kurtz, apparently saw the Jennings story as an opportunity to get some free press for their anti-vaccine nonsense. They “reached out” to Jennings. Here is what Kurtz had to say in an interview with Coffey.

“And the story is, anyone that sees– it is just so compelling, Jenny was crying over it,” says Kurtz.

Kurtz also believes with the proper treatment, some of her symptoms may be reversible.

“Well, unfortunately we happen to be very good at handling vaccine injury. We’ve got a lot of doctors that have experience in doing that, so our doctors and our resources are completely available to her, and we’re going do everything we can to give her a lot of options to, to help take care to help recover from this condition as best we can,” says Kurtz.

Poor Jenny was in tears, and Kurtz was ready to help by unleashing anti-vax quackery to treat Jennings.

But then Kurtz and Generation Rescue ran into a real patient advocacy group – Rogers Hartmann and dystonia activism. Hartmann runs an independent dystonia charity, It was clear to Hartmann (as it was to anyone sufficiently familiar with dystonia) that Jennings did not have dystonia. She called Fox and Stan Kurtz – and then the furious backpedaling began. Until then Coffey had accepted the story at face value, without any journalistic due diligence in evidence. When she learned that perhaps she had been snookered, the panicked calls to Hartmann began.

It was not until after Hartmann became involved, and the e-mails and phone calls of many other dystonia activists putting pressure on Fox, did they do follow up reporting, such as interviewing Dr. Stephen Grill about dystonia and the fact that Jennings does not have it.

It was also due to Hartmann that Generation Rescue was (partially) saved from its own stupidity and zealotry. Stan Kurtz was going full-steam ahead, as if Generation Rescue had the expertise to diagnose and treat vaccine-induced dystonia (an entity never reported in the medical literature). And then (after being contacted by Hartmann and having the truth of the matter explained to them) suddenly and without a word, Generation Rescue backed away from Jennings and took down the web page.

I wonder if they will be as interested in helping Jennings now that they cannot exploit her case to fear monger about vaccines.

Curiously, the Age of Autism blog (never ones to let the facts get in the way) is still treating the case as a legitimate story of vaccine injury. Although they are being a bit cagey. They are just printing a letter from Jennings, with a preamble dismissing expert opinion that her disorder is psychogenic. They do this by explaining the etymology of the word “hysteria”, which is not exactly a synonym for psychogenic (in fact “hysteria” is no longer used because of its connotation). I guess they deny all psychogenic illness, even though it is very well described in the neurological literature.

I have personally seen cases that were proven to be psychogenic. These are not just cases where we cannot find a neurological cause – it is not a guess or a last resort. There are cases in which the neurological signs and symptoms on display are anatomically impossible – where a psychogenic cause is the only plausible explanation. And it is treated as a real and serious disorder – just a psychological disorder, rather than a neurological one. Ironically, AoA is trying to imply that neurologists who invoke the psychogenic diagnosis are being insensitive, but in reality they are basing their implications on a premise that is itself insensitive – a rather unsophisticated and harmful denial of psychological illness.

So far, AoA is still running with the story, writing in follow up about how Jenny McCarthy and Jim Carey were so kind to reach out to Jennings. I guess they didn’t get the memo from their sponsor, Generation Rescue, to back off.

This is an unfortunate story, and I wish Desiree Jennings the best. I hope she finds her way to a competent clinician and does not get caught in the maelstrom of quackery that is sure to follow her.

But this is not a story of a woman injured by a vaccine. This is not even a rare vaccine reaction. It is something else. Neurological experts know it, and the dystonia community knows it.

This is also a story of irresponsible journalism. As Hartmann pointed out to me – most national media outlets did not touch this story, because even basic journalism would have uncovered that there is something fishy here, and no good journalist wants to get caught with their pants down. This is also a story of how irresponsible the anti-vaccine movement is. They were quick to exploit this case for its emotional appeal, pretending to have expertise they lack, and got it completely wrong. That’s a good summary of the anti-vaccine movement as a whole.



Generation  Rescue has put back their page about Desiree Jennings. Apparently they decided that the propaganda value outweighed the risk. They are attacking those of us who felt obliged to say that the public videos of Jennings do not support a diagnosis of dystonia.

They again attack the concept of psychogenic, minimizing in the process all mental illness, and comparing it to outdated notions that autism was due to cold mothers. This is an absurd comparison. The only point being made is that Jennings symptoms, those that are in the public domain, are not compatible with the diagnosis of dystonia. It can further be added that there is no evidence or plausible reason to conclude that her symptoms are due to the flu vaccine.

They also repeat the anti-vax canard of using the vaccine injury compensation program as scientific evidence for specific types of injury caused by vaccines. This is not legitimate – the vaccine compensation program has a very low threshold of evidence for accepting claims. They only conclude that “compensation is appropriate” – not that it has been established that the alleged injury is in fact caused by vaccines.

As usual, Generation Rescue if being very intellectually sloppy in their presentation of this case, the public discussion of this case, and the nature of the evidence for vaccine safety.



The is reporting that a review of the vaccine adverse events reporting database reveals a report that fits Desiree Jennings’ case. The report includes a review of hospital records, and contains this summary:

The admitting neurologist felt that there was a strong psychogenic component to the symptomology, and made a final diagnosis of weakness.

48 responses so far

48 thoughts on “Dystonia Case Follow Up”

  1. HHC says:

    The questions I have involving the trauma to the cheerleader are multiple. Why did it take exactly ten days for these cluster of symptoms to appear? Why was there no problems with eating. speech. and physical movement during this ten day period? What time of day did these manifest themselves, AM or PM? Who was present and where was she located? At training or at home? What type of interventions occurred prior and after these symptoms appeared? How did she respond to these interventions? Was the cheerleader free of psychological and physical movement problems prior to this documented trauma? What health care professionals had she used?

  2. Tom Nielsen says:

    The truth is one cold-hearted bitch with a 14-inch strap-on!

  3. superdave says:

    There is still one part of this story that though I think is easily explained by incompetence or misunderstanding. News reports have stated that Jennings was told by doctors at JHU hospital that this was dystonia caused by a flu shot. Perhaps, they were implying that this was a psychogenic disorder that was triggered by the flu shot and she misunderstood what they meant. Thus it would not be entirely inaccurate to say that her symptoms were caused by the flu shot, but it would be misleading.

  4. Eternally Learning says:

    The sad part here is that the damage is already done, and no one is going to report that this was all a mix-up. Everyone is just going to back away from the story and no matter what happens to Mrs Jennings, the cultural meme of her is one of being damaged by vaccines.

  5. Orac says:

    Actually, as of this morning, AoA is still hyping the story:

    They promise to “to update you on her condition soon.” I can’t wait.

    It looks to me as though, as you say, someone at AoA didn’t get the message after Generation Rescue took down the links to its “help Desiree” page, which is hilarious, actually, given that AoA is a wholly owned subsidiary of Generation Rescue, its propaganda blog, if you will.

  6. Fifi says:

    Since responsible journalism is being discussed, I thought I’d repost this from the other thread since it got no response. Responsible journalism starts at home 🙂

    I find it problematic that H1N1 and the HPV vaccine are being talked about in the same breath for a number of reasons. I’m not anti-vaccine and intend to get the H1N1 flu shot when it becomes available to the general public in December where I live (if I haven’t already had the flu by then and been tested to identify it as H1N1). The HPV vaccine is a very different matter, as are some of the controversies surrounding it. Even Dr Harper, one of the researchers who conducted trials for Merck and GSK, has come out against the way Gardasil is being marketed and it’s pretty clear that Merck has put a lot of lobbying muscle into trying to get it made mandatory. It’s this kind of lobbying and overt greed by Merck that, quite rightly, makes people suspicious of Merck’s motives and the vaccine’s safety. Since, rightly or wrongly, many people equate pharmaceuticals and their makers with medical practice, this kind of behavior by drug/vaccine manufacturers becomes associated with medicine and individual physicians in the public mind – particularly when doctors and medical organizations aren’t critical of this kind of mercenary behavior or seem complicit.

    I found this to be a very good and balanced article on the subject.

    To be clear, I’m not against the HPV vaccine in principal but find the lobbying and marketing efforts around it very problematic, particularly considering that the evidence isn’t in for effectiveness over the long term. I also find it rather disappointing that it’s being lumped in with flu vaccines in discussions here, which comes off (no doubt unintentionally) as being somewhat dismissive of women’s concerns. It’s an unfortunate impression to give, even unintentionally, if one considers the history of women’s health. So far all the women I know who work in medicine and medical science that I’ve asked about it have reservations (though I also have friends, who don’t work in medicine or science, who’ve had their daughter’s vaccinated). I’d be interested to know why this is being done on this blog – particularly since responsible journalism is being discussed.

  7. Fifi – I did not respond because, seriously, you are making a point where none exists. I simply mentioned that there were two vaccine reaction scares in the media. I was in no way equating the two vaccines, and the rest of my discussion was entirely about the flu vaccine.

    Your characterizing this as “mentioning in the same breath” is vague and then you draw implications from this that are simply not justified.

  8. Fifi says:

    Steven – By mentioning them together you ARE linking them – perhaps not intentionally but it is a sort of guilt by association thing when you mention them together. What I am talking about is public perception and how associations are made in non-scientists minds by this kind of thing. The anti-vaxers use this kind of strategy all the time, that you refuse to even consider that it may be effective and refrain from doing it yourself so as not to, unwittingly, support their communication strategies is kind of silly. The anti-vaxers fail at science but they excel at communication, you’d do well to get to know why and how your enemy is successful so you’re not actually playing into their hands inadvertently. While you may see these issues as being about medicine, they see them as being about communication.

    Simply being dismissive of my post is doing nothing but amplify the impression that you’re unwilling to consider the main substance of my post (which was about why it’s problematic to associate the H1N1 vaccine with the HPV vaccine, even in discussions or associations generated by anti-vaxers).

  9. TsuDhoNimh says:

    From the original story: It’s understandable how Desiree now feels about the seasonal flu shot. She – and her doctors, she says – are convinced it is what’s caused her alarming, adverse reactions.

    She says the doctors are convinced it was the flu shot. To the best of my Google ability, no one has heard directly from any qualified doctor who has examined her.

  10. TsuDhoNimh says:

    AoA is trying to imply that neurologists who invoke the psychogenic diagnosis are being insensitive, but in reality they are basing their implications on a premise that is itself insensitive – a rather unsophisticated and harmful denial of psychological illness.

    We cover “psychogenic shock” in first aid (passing out at the sight of someone else’s blood is an example). The passing out is real even if the cause is not physical.

  11. Fifi – I must continue to disagree with you. I did not link the two vaccines – except in the way that they are actually linked, in that they both were the subject of false media scares about severe reactions. The comment was about irresponsible media jumping on a dramatic story without first verifying them, leading to false panic.

    Simply mentioning the other case is not linking the vaccines themselves. You are off-base here.

  12. I doubt her doctors will make a public statement because of confidentiality. I do not trust her word at all in interpreting what they told her. Here are the possibilities:

    They also think her reaction is psychogenic, but were not open about their impression, taking a non-confrontational approach.

    They think her reaction is psychogenic, and told her this, but she misinterpreted what they told her.

    They were not certain, and gave her a vague diagnosis or list of possibilities – and she ran with the one she wanted to hear.

    They thought she had dystonia from the vaccine, in which case they were simply wrong.

  13. Fifi says:

    Steven – I’m talking about communication strategies but you can continue to disagree and refuse to consider my reservations about linking HPV and H1N1 vaccines by mentioning them in the same paragraph. It’s unfortunate that you’re not open to understanding communication strategies and how people who aren’t scientists end up perceiving things to be connected.

    You DO understand that there’s a reason why both are false media stories that have legs, don’t you? (And a story can very easily have legs without having a scientific leg to stand on.) Are you actually interested in communicating with non-scientists and the general public? Sometimes it seems as if you’re not and are unwilling to consider critiques while liberally calling out Fox for not being good journalism and being sensationalist (well, duh, talk about taking aim at a very easy target).

    It appears that you uncritically support all vaccination and dismiss even legitimate concerns regarding HPV. Now, this probably isn’t true or what you intended to communicate but that’s the appearance you’re giving to some of us. I understand that for you the battle is over science but what you don’t seem to understand is that for anti-vaxers and purveyors of woo it’s all about communication strategies. So far the woo communication strategies seem to be winning out over your own, even in medical schools and at the NIH…and certainly with politicians who are all about communication and perception. I am not, of course, recommending lying or being as unethical as the purveyors of woo. What I’m recommending is not, inadvertently, supporting their communication strategies and being aware of how certain perceptions of association are created in the public mind. It’s particularly unfortunate that you brought up HPV vaccines in a text about psychogenic conditions since there are legitimate reasons for women to be cautious and to question the lobbying efforts of Merck in the US (and no doubt elsewhere). While I realize you probably didn’t intend to mix in HPV controversies, psychogenic conditions and H1N1 vaccines, you inadvertently did. Or maybe you do think that any woman who questions HPV vaccines is simply being hysterical and there is no legitimate discussion to be had. I would hope not but you’ve done little to indicate otherwise so far.

  14. isles says:

    It is totally fair to link HPV and H1N1 vaccines, in that HPV vaccine is routinely blamed when a young woman happens to start having nonspecific symptoms after vaccination, and that’s what’s happened here too.

    “Biological plausibility, schmiological plausibility,” say the antivaxers.

  15. Fifi says:

    isles – Yes, anti-vaxers routinely talk about all vaccines as being the same and this creates a public perception that they all are the same. What I’m questioning is why you or Steve Novella would want to perpetuate this strategy that is very effective for anti-vaxers.

    Do you believe concerns about H1N1 and HPV vaccines are entirely equivalent and irrational?

  16. superdave says:

    Fifi, they are indeed linked in the context that there are currently fears about them being propagated through the media. It is entirely relevant to discuss them both in that context. And yes, I do think that there are equivalent and irrational concerns for both vaccines. Not all of them are the same and not all of them are irrational, but many of them are.

  17. mindme says:

    ||It’s unfortunate that you’re not open to understanding communication strategies and how people who aren’t scientists end up perceiving things to be connected.||

    Err. It strikes me that Dr. N’s recent career over the last several years has been about just that. You’re further off base to make this claim.

  18. Fifi says:

    superdave – Of course, the anti-vaxers have been working very hard to make people believe all vaccines are the same and certainly this blog has done little to counteract that message and seems even to be affirming that message.

    There are both rational and irrational concerns regarding the HPV vaccine, and certainly some are just part of the bigger vaccine fear mongering. However, some concerns you may believe to be irrational may actually have a very real basis. (One would be the tendency in the US for big companies like Merck to lobby for mandatory vaccinations using their product.) As it stands regarding HPV vaccines, Dr Harper takes a cautious, safety first stance that takes into account both women’s longterm health and right to make our own choices regarding something that isn’t an issue of herd immunity but of personal health choices.

    [excerpt from Medscape article, which includes a variety of medical opinions and is the most balanced discussion of this issue I’ve come across]

    However, Diane Harper, MD, professor of community and family medicine/obstetrics and gynecology at Dartmouth Medical School, in Hanover,New Hampshire, and director of the Gynecologic Cancer Prevention Research Group at the Norris Cotton Cancer Center, is more circumspect. Dr. Harper, who was involved in clinical trials with both HPV vaccines, commented during an interview, “Serious adverse events reported do happen, but in small numbers of women being vaccinated, and some of these events may be so rare that they will never be directly linked to the vaccine.”

    Dr. Harper notes that she has received money from both Merck and GlaxoSmithKline for consultation about and conducting clinical trials on the HPV vaccines. “This is a good vaccine and it is generally safe,” she said.

    Vaccine Is Only Part of the Story

    However, there is also another very important part to the cervical cancer prevention story, Dr. Harper said, and that is regular Pap tests. Even women who are vaccinated need to have regular Pap testing, as otherwise they are still at risk of developing cervical cancer. And women who decide not to have the vaccine can still protect themselves by undergoing Pap testing.

    Dr. Harper feels this message has not been made clear to the general public and that it has been overshadowed by what she considers to be aggressive and inappropriate promotion of Gardasil. As a gynecologist dealing with the general population, her advice on the HPV vaccine is that “if you are at all concerned, then don’t have the vaccine — have regular Pap smears and you will be equally protected from cervical cancer.”

    She continued, “Whether or not to get vaccinated with Gardasil is a personal choice by each girl/woman and/or her parents.” Each individual must weigh her family health history and whether it may put her at any possible risk for an adverse event that Gardasil might trigger (not even necessarily cause). As examples, Dr. Harper mentioned family history of motor neuron disease or autoimmune diseases, which could affect how the person reacts to the vaccine. She illustrated this point by saying: “Salt does not usually kill anybody, but for a person with congestive heart failure, it could lead to fatal pulmonary edema, so you could say that salt caused their death, as it was the last straw that broke the camel’s back.”

  19. Fifi – you have now hijacked the comment thread of this blog to harp on a topic that has nothing to do with this blog post and comes from your misinterpretation of one sentence from my post on Friday – clearly to talk about what you want to talk about, rather than what these last two blog entries are actually about. Please stop.

  20. Orac says:

    Dr. Harper also spoke at a crank anti-vaccine conference:

    (See the second half of the article.)

    When I heard about Dr. Harper’s agreeing to speak at the NVIC, my first thought was that she had been duped, but after hearing what she had to say I now fear that she’s drifting into the anti-vaccine orbit.

    Sorry, Steve. I just felt obligated to point out that Dr. Harper is probably no longer a reputable source.

  21. pious fraud says:

    Reading this followup, it never stops amazing me, how much leg work is involved in clearing up misinformation with the hard earned facts. Oppositely, playing up on fears and giving half truths that confuse the issues seems to be now easier than ever.

  22. HolidayNova says:

    Fifi I really believe Steve was only make a comparison. Do you think you might have read too much into the fact he mentioned HPV? You said that you know people working in medicine that have reservations .. people are scared of new things they don’t understand, scared of what’s in the dark? but 99.9% of the time they step in they realise there was nothing to worry about, even scientists including medical scientists are human and get scared especially if they know the topic enough but the details are still dark. The media can effect them also. This is where skeptical training of questioning everything you hear especially from the media helps. In the cases of vaccines, trials and tests have been done so there’s nothing to worry about, it’s safe to step into the dark with everyone else but people can’t help feel anxious when even a minority puts doubt into peoples minds without proof. Anxiety only makes the imagination run wild. Of course you should, if your concerned, look at any quantitative results of people having real side effects from a treatment. I wonder if there is a register for GP’s to report any adverse side effects for each treatment?

    It’s a pity we don’t have the technology to tailor each drug to each persons gene profile to prevent 100% of side effects. When this happens we might aswell let Doctors still control the patients anxiety I guess… gives them something to do.

    Back to news reporting, in a perfect world any conclusions behind a medical/science news story should be referenced so people can have a look and verify the conclusions. It would be great if reporters working for a publisher would need a licence and they could lose it by not referencing their sources. Universities would grade the quality of the source and both source and grading must be published with each article. Put that in the constitution.

  23. Steve, thanks for this excellent information. I actually had a practical use for it in getting a family member to stop “believing” in this particular point.

    And pious fraud, it is frustrating. Rationality and logic just gets lost in the internet. The sad thing is that the great websites that do debunk these myths, just don’t get the traction. I mean short of a couple of individuals who don’t get it, most of us who read these blogs are already anti-pseudoscience.

    I write a blog just to make sure more people read about this stuff than just us. At least I hope.

  24. @ Fifi

    I think there are other places where you can discuss your HPV conspiracy theories. I’m almost certain this particular post is about flu vaccine and a media scare.

  25. superdave says:

    I’m sorry Steve but I have to refute this one statement by Fifi. Fifi, you are entirely wrong when you say that the anti vax movement want’s to say that all vaccines are the same. They actually claim that they are so different that each one needs specific testing. This is not the case, and to actually bring this argument back to the topic on hand, this is why both the flu vaccine and the swine flu vaccine do not need to be vigorously tested every year, as their formulations are essentially similar save for the specific proteins that make up the antigens. Since miss Jennings never had a reaction to the flu vaccine before, it is unlikely a specific ingredient in the vaccine would have caused anything this time.

  26. stargazer9915 says:

    Fifi – you are beating a dead horse. The more you talk, the more you look like a conspiracy theorist (to put it mildly). Back the truck up and re-read your posts as though they were from some other person and you will see what the rest of us do.

  27. Tom Nielsen says:


    Please read this:

    And try putting it into perspective with your recent posts.

    Especially notice “a troll is someone who posts controversial, inflammatory, irrelevant, or off-topic messages in an online community disrupting normal on-topic discussion”

  28. WeWee says:

    Thank you Steve for this article.
    The story of Desiree spread in Italy also and some TV speaker and many websites speaking of this sad story.

    This is a story of bad journalism ad quackery, that’s all and Desiree is a victim of many charlatans not of the vaccine.
    I’ll write something of this story on my blog linking yours articles.

  29. Fifi says:

    You may want to check out the Skeptic UK website to see how Dr Harper is being misrepresented in the UK (since so many people here seem to believe what they read in the tabloids and what anti-vaxer’s claim!)

    “However the way Dr Harper was portrayed in the article was strange given that she herself has written that “HPV vaccination of pre-pubescent girls will be effective for many girls. Vaccinating girls and women older than 12 years of age may accelerate the reduction in cervical cancer rates” and, not 2 months ago “Post-marketing surveillance of Cervarix and Gardasil continues to show that they are safe for most women despite rarely occurring serious events”.

    Thus it was with unsurprising inevitability that it turned out the good Doctor had been completely misrepresented by the Express. When I contacted Dr Harper shortly after the piece was published she said she had been “burned” by UK reporters. She has now filed a complaint with the Press Complaints Commission. The paper has pulled the story from their website, and published an apology over the weekend.”

    Steve, since you’ve allowed everyone free reign with ad hominems, I hope you’ll at least address the facts.

  30. dwayne says:

    “Well, unfortunately we happen to be very good at handling vaccine injury. We’ve got a lot of doctors that have experience in doing that, so our doctors and our resources are completely available to her, and we’re going do everything we can to give her a lot of options to, to help take care to help recover from this condition as best we can,” says Kurtz.


    Generation Rescue can cure dystonia? That is awesome! Surely they’ll get to work immediately and stamp it out worldwide. That shouldn’t be a tough task for this kickass team of doctors.

    Oh, and by the way, I wasn’t going to get a flu vaccine because it’ll kill me. But apparently, these guys can unkill me, so I’m all over it.

  31. DrJenGunter says:

    This dystonia woman is horrible, but those who are parading around an probably mentally ill woman and holding her up as a Golden Calf are worse.

    My 6 year old has dyskinetic cerebral palsy and dystonia. He fights all day to control his little body. Desiree and those involved should be forced to spend some time with people who truly struggle with dystonia.


  32. kaazoom says:

    The diagnosis of a psychogenic movement disorder is not without it’s problems. The fact is no one can scientifically explain how such a reaction happens. I was given a diagnosis of a psychogenic movement disorder, and was treated with utter contempt by the neurologists who saw me. They did not want to listen to what was happening. I was told it was psychogenic before they even examined me! This was despite the fact I have no history of psychiatric problems; had not suffered any major trauma, and had been seen by a neuropsychiatrist who said he could find no evidence of anxiety, psychiatric problems or conversion disorder! My illness is still progressing, but no one will look at me objectively any more.

    I asked a neuro-psychiatrist how psychogenic problems happen. His answer was ‘it depends on what model you use’. In other words we do not know. It is at best an educated guess. There are no tests to prove it, it is a diagnosis of exclusion based on current medical knowledge.

    The diagnosis of hysteria ( the original name for psychogenic disorders) has a very bad history. Many now recognised physical diseases have at one time been considered to be psychogenic, including dystonia. Given it’s background, and the abuse patients have often suffered because of it, it is not surprising that patients are very sceptical when told their illness is psychogenic.

    Misdiagnosis of psychogenic disorders happens. I know people who have dystonia, parkinson’s disease or MS who have been misdiagnosed as having a psychogenic illness. One women I know was misdiagnosed for 11 years. She had been seen by numerous neurologists who all told her that her symptoms were psychogenic. She ended up in a wheelchair virtually unable to move. She lost her husband because he believed her doctors that it was all in her head. She was eventually diagnosed with Parkinson’s Disease! It turned out that a doctor had written ‘depressed’ in her notes and all the other doctors assumed that was the cause of her illness. The diagnosis of psychogenic disorders is dangerous and can lead to long term abuse. It can, and is, used by some lazy doctors who cannot be bothered to look carefully, or who make up their minds too soon because they see the person has had a recent trauma or have read something in their notes. Once the diagnosis is given, that person is left without any medical care. Any physical problems are likely to be seen as being psychogenic.

    The ideas that surround psychogenic disorders, such as primary and secondary gain, are extremely insulting. The idea that there is anything to be gained by being disabled is crass beyond belief. I wish the psychiatrists who make such claims could be disabled for a few months to see how crass this argument is. The vast majority (including me) want to get on with their lives and hate being unable to do what they used to be able to do. Most people who have symptoms science cannot yet explain suffer greatly. Many can no longer work, they lose social contact, they lose their homes, they are in constant discomfort from their symptoms and they are treated as time wasters by any medical professional they see. Not much gain there!

    It would be far more honest if doctors just admit there is still much they do not yet know about the brain. That not everything can be picked up on scans or are due to space occupying lesions. Remember, no one actually knows the real cause of many neurological diseases including dystonia (scans are useless in it’s diagnoses too). They should recognise that the patient has a real dysfunction in their brain which the patient has no control over. They should also provide ongoing support and regular check ups in case something has been missed or the patient is presenting atypically.

    Trying to convince a patient who knows his/her symptoms are real, physical and they have know control over, that their problems are down to repressed memories, depression or shock when the patient knows none of this is true, is at best disrespectful and at worse abusive. It is the doctor trying to project his or her own insecurity, about not knowing the cause is, onto the patient.

    Of course, the whole argument about what is a physical disease and what is psychiatric is a philosophical one. Is the mind something separate from the brain? Are not all the brain’s functions physical in the end? Are not ALL functions of the brain in the end neurological? I wonder how much biomedical research has been done on patients with long-term unexplained illnesses? I wonder how many post mortem’s have been carried out on these patients to see if any physiological abnormalities can be found? None of this is likely to happen because the average neurologist thinks these people are just a waste of his or her time.

    The ideas of Freud no longer have as much authority in the medical world except when it comes to hysteria. I think I am right in saying there is no evidence that Freud ever cured someone of hysteria, and many of those he considered hysterical would nowadays be diagnosed with neurological diseases. At one time a person who had an illness science could not explain might be exorcised of a demon. Nothing much has changed; the only difference is the ‘demons’ are now thought to be in the patients head and the exorcist is a psychiatrist.

    “Physician – if you can’t find the cause, blame the patient!” Should be the motto of many doctors.

  33. kaazoom – the diagnosis of psychogenic – like every diagnosis in medicine, has false positives and false negatives.

    But it is not, as you say, simply a diagnosis of exclusions. While that is an important part of the diagnosis (ruling out other causes) in neurology we have a pretty thorough understanding of the basic systems that control movement (which should not be confused with the more complex and abstract systems of higher cognition). This makes it possible, with high degrees of confidence, to look at how someone is moving and say if it is possible or plausible that it is caused by a neurological disorder.

    As I said in a previous comment – some signs that patients present with are anatomically impossible.

  34. kaazoom says:


    You seem to be making judgements about this poor woman. Your comments suggest that she is in someway responsible for her illness or is putting it on. Even those who are saying it is psychogenic are not saying that. I am sure Desiree’s suffering is real. Just because the cause is not known doesn’t mean she is faking it or that it is under the her control.

    I have suffered numerous health problems since December 2005, including a movement disorder. My health problems seemed to start within 48 hours of having the flu jab. Now I am not saying that the flu jab caused it, neither am I anti-vaccination, although for me I won’t have the flu jab again just in case.

    The reason I do not directly blame the flu jab is there are other factors to consider. I had been ill the week before I had it and had only just gone back to work. Is it possible that I was still infectious and the flu jab in some way worked with the infection? I do not know. I was also found to have very high blood pressure at the time I was vaccinated and had my medication changed. Could that have been involved? I initially blamed my problems on the new drugs and tried different ones.

    My illness started with feeling faint on standing and flu-like symptoms. I also had a strange sensation down the left side of my face, it feels like someone has slapped me round the face. Within a month I was having increased problems walking (nothing as extreme as Desiree’s gait problems), my legs would become stiff after walking about a mile. This now happens after walking a few yards. 5 months later I started to get involuntary movements. I have numerous other symptoms which I will not bore you with. You can find out more on my vlog if people are interested ( I may regret posting this link!).

    To cut a very long and complicated story short, I have been told it is psychogenic. This makes no sense to me whatsoever. Most of the explanations I have heard about this disorder sound about as scientific as believing it has something to do with the position of the moon on my day of birth!

    One thing I do know is it has ruined my life. I have no control over it. It is also progressing, yet know one will look at me objectively, as I have been labelled with a pscyhiatric problem even though a psychiatrist could find no evidence of psychiatric problems!

    Just because medical science cannot explain an illness, doesn’t mean the person who has it isn’t really suffering. Not only do they suffer from very disabling symptoms, they also have to suffer abuse from some doctors and members of the public.

    I feel sorry for Desiree. She only wants help to get better, but instead she has been used by anti vaccination activists to support their claims, and also by those who are pro-vaccination to try and counter the views of the anti-vaccination lobby. In the middle of this is a real person who is suffering. The doctors involved in this should know better. But compassion is something that some doctors lack. Winning an argument is far more important to them than the person who is caught in the middle.

  35. kaazoom says:

    Hi Steven,

    My neurologist said psychogenic IS a diagnosis of exclusion. No one has shown me ANY positive signs, that you say there exist, which confirm a psychogenic illness like you suggest. It still remains that no one can explain a proven mechanism as to how psychogenic disorders happen.

    Any possible psychological problem I may have , have been caused by the utter contempt I have been treated with by some neurologists. I used to have great respect for doctors but now I am almost doctor phobic. The neurologists I had at the National in London were rude, dismissive and arrogant.

  36. Eternally Learning says:


    I think that you are making a leap in your logic about psychogenic disorders. It may very well be, and probably unfortunately is, that many Neurologists use that diagnosis as a diagnosis of exclusions, but that does not mean it is. That many people do the wrong thing says nothing about how objectively they should diagnose a psychogenic disorder.

    Additionally, your comment about all the doctors forgetting about the suffering of the woman with the disease/disorder, misses the fact that so far as anyone here has said, the doctors treating her have not entered into the public debate at all. That leaves us with the fact that she is being treated and I don’t see why, since she made herself a public figure speaking out against the vaccine, it is inappropriate for other experts to comment on her situation.

  37. Calli Arcale says:

    kaazoom — Steve is a neurologist himself, so when he says it is not a diagnosis of exclusion, he means that he does not rely on exclusion alone to diagnose it. It’s quite possible that your neurologist is not as well informed on the subject as Steve is.

    And, sadly, there are also doctors who are too quick to resort to the diagnosis of psychogenic. I had a relative with Addison’s Disease, one of the diseases particularly prone to misdiagnosis as various psychological disorders (anxiety, depression, eating disorder, etc). That one is also associated with uncontrollable weight gain, lethargy, and profuse sweating, giving the patient the look of a fat, lazy slob, which can be very tragic for the patient. Yet it’s actually caused by a disorder of the adrenal glands, overproducing cortisol. Luckily, her doctors worked out the real cause before it ruined her life. Other patients haven’t been so lucky, and have found friends and other associates abandoning them, believing them to not just fat, lazy slobs but *delusional* fat, lazy slobs before they finally find a doctor who does more than prescribe Zoloft. It’s a terrible thing.

    That said, depression is also a terrible thing. I’ve been diagnosed with chronic depression. It can definitely cause weird physical symptoms, and it is relatively easy to treat so I think it is worth attempting to treat the condition as depression. It’s a shame that depression has such a negative stigma, to the point where people think they’re actually defective or bad people if it really is all in their head, but are more accepting if the problem is something physical. Really, it all stems from the tendency to think that we are entirely in control of our minds, and that we have perfect self-will. Anyone who’s been addicted to alcohol can attest to how wrong — and dangerous — that belief is. But it’s why we castigate the poor, the obese, the uneducated, the young unwed mothers. We assume they chose to be that way, or became that way as a consequence of choosing something unwise or socially unacceptable. Karma, if you will.

    Still, the biggest danger, as you’ve pointed out, with even a tentative diagnosis of a psychogenic disorder is that doctors won’t trust the patient’s reports afterwards. And that’s very dangerous. I had a recurrent stomach ache when I was in first grade. For quite some time, it was assumed that it was normal first-grade jitters. Turned out, it was an umbilical hernia requiring surgical repair. Many pains are indeed quite legitimately psychogenic in nature; it is quite natural. The tricky part is telling which ones, and mistakes can have serious consequences. Assuming a psychogenic disorder is physical could lead to unnecessary and potentially dangerous drugs or even surgical treatments. Assuming a physical disorder is psychogenic delays proper treatment of what could be a life-threatening condition, and at very least, delays improvement of a person’s quality of life.

    BTW, I believe there are known mechanisms whereby psychogenic disorders can manifest themselves. The “fainting at the sight of blood” mentioned above is one of the better studied, I believe. I’ve heard a theory that the person’s blood pressure abruptly drops, causing them to lose consciousness briefly. Certainly emotions can involuntarily influence the body, so why is it implausible that the mind could involuntarily produce strange movements?

  38. stompsfrogs says:

    Your brain is made of meat. People forget that.

  39. mindme says:

    ||Steve, since you’ve allowed everyone free reign with ad hominems, I hope you’ll at least address the facts.||

    Dr. N. always allows pretty free reign in the comments section. You’re not being made a special case, if that’s your implication. That doesn’t compel him to address further something he’s already made his opinion pretty clear on.

    Let me try and understand what’s going on here:

    Dr. N. noted the media is quick to connect a vaccine with a possible case of vaccine injury. For example, last month we had some fear mongering about HPV. This month it’s about H1N1.

    Fifi jumps in with an issue about how a drug company is marketing HPV and a Dr. Harpy who might have a real concern. Dr. N. needs to address this as he’s already connected HPV with H1N1.

    Dr. N. states he doesn’t need to address drug company marketing as the connection he’s made between the two vaccines is obvious to everyone and in case you missed it, he repeated it.

    Fifi claims Dr. N. fails to understand how to communicate science to the general public. Dr. Novella. Host of SGU. He is a bad science communicator. In Fifi’s opinion.

    People tell Fifi to let it go.

    Fifi feels since other users are attacking her, Dr. N. needs to now make good and address her issues with HPV.

    That about right?

  40. Fifi says:

    mindme – Since some of my responses to the accusations and ad hominem responses haven’t been published and all my comment are now waiting for moderator approval before being published – and Steve seems to be cherry picking what he allows through, which is obviously his right since it’s his blog but is also, well, cherrypicking according to what he likes or approves of – this is a pretty lopsided conversation. I’m willing to let it go at this point, apparently you’re not.

  41. Calli Arcale says:

    Thanks, stompsfrogs!

    I’ve thought of some more examples. Consider the classic example of Pavlov’s dogs. They start to salivate at the sound of a bell, as they have associated bells with food. This is entirely involuntary, and is a learned behavior, not something built-in. It’s hard to ask a dog whether he is deliberately salivating, but you *can* ask humans. Do you generally salivate on purpose? I don’t; it’s generally involuntary. But it’s commanded by my brain, quite clearly. It happens when I think about yummy food, even when there is no yummy food present, so it can’t be attributed to some sort of smell response bypassing the brain. For that matter, consider that people can become sexually aroused just by *pictures* — even when they do not want to be sexually aroused by the pictures, or consider the pictures to depict something they’d definitely never want to engage in, sometimes to their great consternation.

    And that’s just the really common stuff.

  42. CodeSculptor says:

    The bottom line is that it’s not dystonia, is that much agreed? I mean, she’d said on very numerous occasions that her doctors diagnosed her as having dystonia.

    But the articles never had, nor ever do cite a doctor willing to discuss her case (it’s high profile now, and she can give consent, but clearly refuses to).

    And of all the rather qualified neurologists speaking on the record regarding the case, it’s pretty obvious that she either lying (probable), misunderstanding (unlikely that she’d pull dystonia out of nowhere) or she’s been misdiagnosed. If she’d been diagnosed improperly, then definitely name the doctor(s).

    In all cases, the reporting was all hearsay profoundly irresponsible.

  43. tamakazura says:

    The major concern for me here is that in our society, saying something is psychological is akin to blaming the victim.
    You are mentally weak, so you must have done something to yourself to make yourself so screwed up. I personally don’t have this view, but it is still very prevalent in our society. I know many people who attribute depression to moral-failings like selfishness and tell people with depression to “lift yourself up by your bootstraps! You have nothing to be sad about!”
    Ms. Jennings, if this not a hoax (I was a bit thrown when she was walking forward and convulsing but managed in a very controlled way to brush her hair out of her eyes), would probably much rather this *was* caused by the flu vaccine, because then it would be a REAL illness, and one that wasn’t her fault.
    As it is, if she does have a psychogenic illness, there will be no end of people telling her to stop walking like an idiot and accusing her of being a selfish attention whore.

  44. I did put Fifi in moderation temporarily to end what I considered to be abusing the comments. She is now out of moderation.

  45. Fifi says:

    Thank you. Not all of my comments seem to have made it through moderation, have some been deleted? (Your choice, obviously, but I’d like to know what happened to them since they were in response to other posters. If you did delete them, can you let me know why?)

  46. TsuDhoNimh says:

    You are linked from US News and World Report:
    by story by Nancy Shute.

    I hope I don’t screw up the link

  47. Joe says:

    It seems she is being “treated” by crank MD Rashid Buttar and is improving

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