Flu Vaccine Caused Dystonia

Replies to This Discussion

Permalink Reply by beka on November 2, 2009 at 8:07am

The Dystonia Flu-Shot Case
Published by Steven Novella under Neuroscience, Science and Medicine, Skepticism
Comments: 1
Robert E. Bartholomew is a social scientist who specializes in mass delusions. He describes them here, in an article he wrote for the NESS, but also in a longer article here for the Skeptical Inquirer and in his several books. About mass delusions he writes:

A collective delusion is the term most commonly used by social scientists to describe the relatively spontaneous spread of false beliefs that do not occur in an organized, institutionalized or ritualistic fashion.

Today, we live in a connected virtual community, and YouTube, Twitter, Facebook, and blogs, in addition to traditional media, are the medium through which community panic and delusions spread.

At this time there are two slow panics spreading through the community – fear of the H1N1 “swine” flu pandemic, and fear of the vaccine to prevent H1N1 flu. Regarding the pandemic itself – this is a real threat, it is just not known at this time how severe it will turn out to be. So far it is looking like another seasonal flu in severity, but with some different features, such as a greater tendency to severely affect otherwise healthy individuals.

The panic over the vaccine, however, is entirely manufactured, primarily by dedicated conspiracy theorists and anti-vaccinationists, and then aided by irresponsible media. There have been two stories in particular about alleged severe reactions following vaccines recently, one dealing with the HPV vaccine and the recent cased of what is being called dystonia following the seasonal flu vaccine. The young girl who died within hours of getting the HPV vaccine was found to have a heart defect, and her death had nothing to do with the vaccine, so that story was rather short-lived.

The new case making the rounds, however, appears to have some legs. It is getting international news attention, and I am being flooded with e-mail requests to analyze the case.

This is the story of Desiree Jennings, who is a 28 year old cheerleader who was apparently healthy until August when she received the seasonal flu vaccine. Ten days later she developed a severe respiratory illness, probably the flu, requiring hospitalization. She then developed an apparent neurological reaction in which she has difficulty speaking and walking, with involuntary muscle contractions and contortions. Her symptoms (including speech) are relieved, however, by walking backwards or by running. She also seems to have attacks of muscle contortions.

News reports are presenting her story as a rare vaccine reaction. Take a look at the video of her movements on this news report also.

This case, of course, has been immediately picked up by the anti-vaccine crowd. Generation Rescue, Jenny McCarthy’s anti-vaccine organization, wasted no time in exploiting this poor girl for their own agenda. She is now the latest poster child in the war against vaccines.

The media is largely covered in fail over their reporting of this case. They failed to ask basic journalistic questions – was the illness Jennings suffered from due to the vaccine, was it confirmed as the flu, and was it the strain from the vaccine, was the incubation period compatible with a vaccine-induced flu, did she get the live-virus version of the vaccine, does she really have dystonia, has that diagnosis been verified, are their other possibilities, and what is the plausibility that it was caused by the vaccine?

None of these basic questions are addressed in the news reports – instead we are given an emotional report of a “one in a million” (a figure apparently pulled out of someone’s but) vaccine reaction. Her episodes are called “seizures” when they are almost certainly not seizures. Her condition has also been called permanent and irreversible – without any justification.

Normally I try to refrain from making medical diagnoses in public cases – but Jennings has now inserted herself in to the anti-vaccine movement, and is using her own case to “warn about the dangers of vaccines.” To mitigate the damage to public health brought about by misinformation in this case, I think it is necessary to provide some expert opinion.

The movements and symptoms that Ms. Jennings displays on the public videos I have seen (linked to above) are not compatible with the diagnosis of dystonia, or any other movement disorder. Dystonia is one type of involuntary contraction of muscles. It can be reduced or exacerbated by certain movements or positions, and there are “task specific” dystonia, such as writer’s cramp, that come out only with certain activity. Jennings does not display the type of movements that are consistent with dystonia. Her speech and movement are, however, very suggestive of a psychogenic disorder.

This also seems to be the consensus opinion of experts who have viewed this case. The Dystonia Medical Research Foundation had this to say about the case:

Because of the concern of individuals with dystonia as to whether or not to get a flu shot because of this reported case, we have sought the opinion of dystonia experts on this case. Based on the footage that has been shared with the public, it is their unanimous consensus that this case does not appear to be dystonia.

The one news report that I saw that actually consulted an expert for their opinion was Fox News. Leigh Vinocur, and emergency room physician, was interviewed and relayed the opinion that the neurologists she consulted were of the opinion that Jennings’ symptoms were consistent with a psychogenic disorder. In other words – her symptoms are not neurological, they are psychological. This does not mean she has any insight or voluntary control over her symptoms – they are involuntary and “real” – just not neurological in origin. Symptoms such as this are not uncommon reactions to emotional stress in some individuals. Given the evidence presented, I think this is a reasonable opinion.

Dr. Vinocur also points out that there are no reported cases of true dystonia resulting from the flu vaccine – this is not a known or established vaccine reaction.

Here is another interview on Fox with a movement disorder specialist, Dr. Stephen Grill, who concurs that (based upon the video, and not personal examination) Ms. Jennings does not have true dystonia but psychogenic dystonia.

It is therefore highly unlikely that whatever Jennings is suffering from now had anything to do with the flu vaccine she received in August. Unfortunately, this is not stopping irresponsible news coverage or exploitation by anti-vaccinationists. Further, Jennings is now in the hands of the Generation Rescue anti-vaccine quacks. I predict that they will be able to “cure” her, because psychogenic disorders can and do spontaneously resolve. They will then claim victory for their quackery in curing a (non-existent) vaccine injury.

In addition to the public harm, Ms. Jennings herself is likely to be harmed by the media attention her case is garnering. She likely could benefit from proper medical attention of her condition. But now she is publicly invested in her disorder, and is likely to accept care from those with their own anti-vaccine agenda. It is difficult enough dealing with psychogenic disorders without international public attention and controversy.

The medical community is always careful to point out that there are very rare reactions to vaccines. No one is claiming that they are 100% safe – no medical intervention is. But severe reactions are very rare. Meanwhile, about 36,000 people die each year in the US alone from the seasonal flu. That figure is likely to be higher this year, as seasonal strains are combined with the H1N1 strain to form a particularly bad flu season. We are fortunate that there are vaccines both for the seasonal flu and the H1N1 flu, which is particularly well targeted because we know the strain.

Other measures for minimizing spread of the flu are, as always, also important – wash your hands, stay home if you are ill, and avoid contact with those with respiratory symptoms. But the vaccines are likely to significantly reduce the spread and severity of the flu. And yet, fear-mongering and misinformation, such as with the Jennings case, is scaring people away from the vaccines, without good cause.


One response so far

One Response to “The Dystonia Flu-Shot Case”
# agashemon 30 Oct 2009 at 9:08 am
Thank you for addressing this, as I physiotherapist (physical therapist) I was highly suspicious but since I am not a neurologist I wasn’t 100% certain. I was quite suspicious as she could run normally, I have never seen a patient with a movement disorder who could do things rapidly but not slowly or slower, it doesn’t make any sense. Thanks again.


-----------
Just had this sent to me...
beka

▶ Reply to This

Permalink Reply by noelv on November 2, 2009 at 8:33am

Thanks for passing it on Beka, I spoke with a few neurologists and they concur with what I thought in how Dystonia presentations occur. I did not think it looked like Dystonia but then again, I am not a physician, just someone who has done at lot of research to know what is wrong with me and what I can expect in the future.. Again, the media is quick to sensationalize and rush to scoop each other before facts are checked and determined.

▶ Reply to This

Permalink Reply by Paul Winter on November 3, 2009 at 3:55am

Of course it might not have been the flu jab that has caused Ms Jennings problems. There may have been other factors such as picking up another virus alongside having the vaccination. But the idea that her problems are psychogenic is, to me, nonsense. I asked a neuro-psychiatrist how my supposed psychogenic movement disorder happened. His answer was it depends on what 'model' you use. In other words science does not know! This is the problem; their is no real science behind the whole psychogenic argument. It is based on Freudian ideas of converting emotions into physical responses. No one can scientifically prove this happens, and psychiatrist have been so wrong in the past having classified diseases a psychogenic, when in fact there are physiological causes. Dystonia is one of them.

The other problem with Steven Novella's dismissal of a possible flu vaccine connection is that it is unlikely that any doctor would report such a react to it. They would have the same reaction as he has; "...no reported cases of true dystonia resulting from the flu vaccine – this is not a known or established vaccine reaction", and NOT report it. They would, like Steven Novella does here, prefer to blame the patient.

I find it appalling that he or any other doctor can make an opinion on this case, in a public arena, when he hasn't examined this poor young woman. It shows a total lack of compassion. As for the The Dystonia Medical Research Foundation, they should know better! The history of dystonia should make them think carefully before making remarks like these.

It seems to me that the establishment are more concerned that people get the flu vaccination than they are about this poor young woman's plight. I am not anti-vaccination by the way and would have probably have had the vaccination even if I had known their was a possibility of an extreme reaction. As I have said, my illness started within 48 hours of the vaccination. The fact is the flu vaccination HAS been link to at least on neurological reaction - Guillian Barre Syndrome. This is a fact. It is rare, but it does happen. So the idea it might cause other neurological complications, especially if there are other factors involved, such as a virus the person is unaware of having, is to me quite feasible.

Vaccinations are known to trigger ME/CFS. Movement disorders are known to happen in ME/CFS as damage is often done to the function of the Basal Ganglia. The new research that is being carried out into the newly discovered XMRV retrovirus may hold clues to why some cases of ME/CFS are triggered by vaccinations.

"Given the viruses propensity for T and B cells it sounds like any kind of immune activation could - by causing T and B cells to replicate - resulting in increased replication of the virus and indeed Dr. Mikovits speculated that XMRV infection could play a role in the sometimes negative effects seen in vaccinations."
http://aboutmecfs.org/Rsrch/XMRVPuppetMaster.aspx

I feel really sorry for Ms Jennings. Being ridiculed and blamed for her health problems by doctors in private is bad enough, but being ridiculed in public must be unbearable. The chances of anyone properly investigating her problems, without a psycho-quakery bias, is now unlikely. Those so called doctors who publicly attack her should be ashamed, especially as they haven't examined her themselves.


Paul

▶ Reply to This

Permalink Reply by Paul Winter on November 3, 2009 at 5:04am

Sorry, I have just realised the article was written by Robert E. Bartholomew NOT Steven Novella. sorry for the mistake. Robert E. Bartholomew is a member of the Wessley school and is one of those who has tried to say CFS is hysteria! Robert E. Bartholomew and Simon Wessley have been involved in much misinformation about CFS. Wessley, is one of those who denies Gulf war Syndrome is a real illness. i would treat anyting with Bartholomew with a great deal of scepticism.

Paul

▶ Reply to This

Permalink Reply by beka on November 5, 2009 at 11:29am

Thanks paul for your clarifications... I don't really understand DMRFs view though when celebs are lining up behind Ms. Jennings now.

Videos about her story are present in the second " Flu shot thread..."

beka

▶ Reply to This

Permalink Reply by Paul Winter on November 3, 2009 at 4:04am

Hi Lynann,

Do you have other symptoms too. such as cognitive problems and fatigue? Has fibromyalgia or CFS been ruled out? Both of these can be triggered by vaccinations.

Paul

▶ Reply to This

Permalink Reply by beka on November 5, 2009 at 11:30am

How are YOU doing Paul ?? Where do things stand for you ?

beka

▶ Reply to This

Permalink Reply by Paul Winter on November 6, 2009 at 6:40am

Hi Beka,

I am still in limbo. I have asked to see a neuro-psychiatrist with the hope that she will at least be able to give an opinion. I had a relapse a few weeks ago and haven't fully recovered from it yet. The last month hasn't been easy either due to my son's iinquest, which meant going over everything that happened last year. It would have been David's 27th birthday on Sunday, so this weekend won't be too good either.

I think I have said before that my dystonic movements (if that is what they are) are only one of many symptoms. In my opinion I think it is most likely that I have either ME/CFS or MS. I did have a MRI back in 2007, but it was very blurred because I could not keep still, the neurologist said it was all clear. I still wonder about PPMS as I have had no real remissions; it affects more men than the other MS varieties; it usually affects people in the forties and it is very hard to detect. I have also found other people who have ME/CFS (Chronic Fatigue Syndrome) who have myoclonic and dystonic movements. Hopefully the new research into the XMRV virus will bear fruit and a diagnostic test for ME/CFS will soon be available. But but at the moment I am speculating as to what is the cause of my problem. Hopefully the neuro-psychiatrist I am going to see will at least be objective.

I am also using a advocacy group who help people who have problems with getting treated properly in the UK's NHS system. They are going to help me to make a complaint about some of the treatment, or lack of treatment, that I have had. They will support me in any meetings I have to go to and help with the letter writing. It will be great having someone who knows the system helping me.

Paul

▶ Reply to This

Permalink Reply by jeffinmo on November 6, 2009 at 11:50am

My 11-year old son has been diagnosed with Dystonia. His symptoms became apparent to me only a few months ago but he claims his symptoms have existed since 2nd grade (age 7), so I'm wondering if I should go back to see what vaccinations he received at that age to determine if there's any possible link.

▶ Reply to This

• First
• Previous
• Next
• Last