Hayley is a monster

There has been some crazy hype over the case of Desiree Jennings who, it is claimed, developed Dystonia – a neurological condition – as a rare reaction to her annual flu vaccination. I researched this story for the Righteous Indignation Podcast where it will be one of my chosen stories on Episode 23 but I thought I would also share my findings here too.

In August of this year Desiree Jennings from Washington had her annual flu shot at a local grocery store. Within ten days she developed flu like symptoms and then came the nausea, vomiting, body aches, and fever – she also says that she was lethargic for a week and started blacking out.

She claims that in a matter of a few short weeks she lost the ability to walk, talk normally, and focus on more than one thing at a time.

Desiree says that she often blacks out, has convulsions that she can’t control and cannot walk forwards properly without twisting and stumbling. However, strangely, she can walk backwards just fine – and if she runs forwards all of her symptoms completely disappear.

She first spoke to FOX 5 news about a severe reaction she supposedly suffered after getting a seasonal flu shot. Now though, people have jumped on this case and are claiming that Desiree suffers from a rare neurological disorder called Dystonia as a result of the flu shot which sadly really helps to fuel the public panic surrounding the vaccine that has been brought about and fuelled by conspiracy theorists, the anti-vac’s people, and aided by irresponsible media.

Desiree’s condition seems to have been grabbed by the anti-vaccination organisation ‘Generation Rescue’ – Generation Rescue was co-founded by J.B. and Lisa Handley and then Jenny McCarthy and Jim Carey joined forces with Generation Rescue and have continued the fight for supposed “vaccine safety and vaccine injury advocacy.” Desiree has now become the latest poster child in their stupid war against vaccines.

The organization claim to be now raising awareness over the safety of vaccines including flu shots. Generation Rescue’s President Stan Kurtz was apparently so touched by Desiree’s story that he says the organization is hoping to fly her to Los Angeles for treatment and hopes that they will be able to “cure” her.

Sadly, people didn’t seem to be asking the right sort of questions about Desiree’s condition. Nobody was asking if this condition was definitely caused by the vaccine and how we could be sure that they’re not just, dare I say it, jumping to conclusions and of course, the major question of whether she actually, definitely has dystonia as has been reported which is a really, actually, quite important factor in this whole thing.

In fact, it wasn’t until a real patient advocacy group came on the scene that Generation Rescue had to take a step back whilst the facts were brought the table. Rogers Hartmann and dystonia activism – an independent dystonia charity that can be found at lifewithdystonia.com realised that Jennings did not have dystonia and so Hartmann called Fox and Stan Kurtz from Generation Rescue to get the facts out there. Only then, when the pressure was on Fox news from Hartmann and many other people who suffer with the condition did they start to interview people who has opposing ideas to the popular theory being spread around by Generation Rescue.

An example would be the interview with Dr Leigh Vinocur who explained that the neurologists she consulted were of the opinion that Jennings’ symptoms were consistent with a psychogenic disorder. That they are not neurological but are actually psychological which doesn’t mean she has any insight or voluntary control over her symptoms and isn’t necessarily faking the condition, but that they are not neurological in origin as is being suggested.

Another point that Dr. Vinocur made was that there are no reported cases of true dystonia resulting from the flu vaccine – this is not a known or established vaccine reaction.

Another was Dr. Stephen Grill, who concurs that Ms. Jennings does not have true dystonia but actually psychogenic dystonia.

This was backed up by Steven Novella of Skeptic guide fame who pointed out on the Neurologica blog that, and I shall quote:

“The movements and symptoms that Ms. Jennings displays on the public videos I have seen 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 exacer-bated 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.”

The Dystonia Research foundation has also been quoted as saying:

“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.”

However, despite Jenning’s case being ruled out as Dystonia and labelled as a psychogenic disorder this shouldn’t be confused as meaning that Dystonia itself is a psychogenic disorder because Dystonia is a legitimate movement disorder. It’s a brain disorder that results in involuntary muscle contractions. The Desiree Jennings case should not confuse anyone about the nature of true dystonia, though I’m sure it will…

This whole mess is down to shoddy journalism and reporting of this case that allowed quacks such as Generation Rescue to jump all over this story and use it to their own means and I think that’s really sad. The effect that this might have is that people are put off from having a flu vaccination out of fear that a similar thing may happen to them – despite the fact that this isn’t possible as Dystonia is not a recognised side effect from the vaccine in the first place. Grr.